Today I have a piece in the Telegraph about the problems that some women have with their mothers-in-law. Many people will be able to empathise!
Here is the link: http://www.telegraph.co.uk/education/main.jhtml?xml=/education/2007/09/15/famother115.xml
Or you can read on here....
The mother-in-law of all battles
Last Updated: 12:01am BST 15/09/2007
Dare to marry another woman's son? That's just asking for trouble, says Sarah Ebner
When Tania Harper's mother-in-law came to visit her, she brought with her two bibs, presents for Tania's baby son, Paul. One bib announced: "I love my Daddy." The other proclaimed: "I love my cat." Mummy, it was clear, did not merit a mention.
"It's absolutely typical," fumes Tania. "She's made it clear that I am surplus to requirements. When we see her friends, she tells them: 'This is my little boy.' Or: 'This is my son's little boy.' I feel like the invisible woman."
Tania's experiences will be familiar to millions of women. For want of a better name, we can call it "mother-in-law syndrome". It's what happens to so many innocent souls when they marry another woman's son.
"By the way I love Paul, I can already appreciate that there's something very special between boys and their mothers," says Tania. "Maybe mothers-in-law are so awful because we've stolen their sons."
Mums-in-law don't always get a great press, but it's often men who moan about them. Les Dawson and Bernard Manning weren't the only comedians to profit from mother-in-law jokes. But research suggests that men actually get off lightly. It's daughters-in-law who suffer.
"Studies show that the mother-in-law, daughter-in-law relationship is the trickiest," says Terri Apter, a psychologist who's writing a book about the subject.
"Men simply aren't as involved," she adds. "They can take a low profile."
Apter says that daughters-in-law feel judged and pressured by their mothers-in-law. She's also found that even modern mothers-in-law disregard feminist sympathies when it comes to their boys.
"They want what's best for their son. If that means suppressing their daughter-in-law's career, they think that's okay."
Lorraine Gibb can echo that: "When I met my mother-in-law, I quickly discovered we had nothing in common except that we both loved her son. Now what really irritates me is the way she discounts anything which contradicts her view that I am an ambitious career woman who doesn't put her darling boy first. This is despite the fact that I do all the cooking, organise the household and, having produced two children, gave up my high-flying job to work part-time. She still seems to think that I could look after her beloved child better."
When you marry, you often don't realise that you're not just marrying the man you love, but also his mother. Many in-laws are paragons of virtue and a joy to know. This article, however, isn't about them.
"I went out of my way to be nice to her," says Gillian Campbell of her mother-in-law. "But she just never made the effort with me. She doesn't ask me anything about myself and always expects me to run around after her. She visited four days after I gave birth and still expected me to make her a cup of tea. She told me it would 'do me good' to get up and about. I'd had a caesarean."
But Gillian knew from her wedding day what she was in for. "My sister went in to see that everything was ready in the church and saw Ian's mum. She introduced herself, saying: 'Gillian looks lovely. Isn't it a wonderful day?' Ian's mum - who was dressed all in black - just looked at her and said: 'Well, I think it's a very sad day.'
"My sister rushed out to tell me not to get married because my mother-in-law-to-be was so awful."
Problems with in-laws can veer from the foolish ("She hates the fact that I'm from London," says Celia Sharman, whose husband is from Nottingham) to the ridiculous ("She couldn't believe that I had a daughter when she'd always wanted one," says Lorraine Gibb). One woman even put a private detective on t her potential daughter-in-law. Amazingly, the couple went on to marry. Less surprisingly, they have now divorced.
Gillian Campbell admits she was so innocent when she got engaged that she didn't think it mattered what her mother-in-law was like. "But she made it obvious that Ian could have done so much better. She's always thought I wasn't good enough."
It's strange how all the women I spoke to, bar one, had mothers-in-law who didn't have daughters of their own. The one who did have a daughter (Celia Sharman's) didn't get on with her. Also, none of the mothers had sisters and none had got on with their mothers. This may be entirely anecdotal but it does suggest difficulty relating to other women.
But perhaps the real problem with mothers-in-law is the very name. It sounds like your own mother, someone you love, who's brought you up and knows you. Mothers-in-law, however, are thrust upon you.
"My mother-in-law has only ever bought me one present," says Tania Harper. "She arrived at our house smiling, and I was really touched, because she'd never got me anything before. Then she opened her bag and got out a T-shirt. It said: 'My mother-in-law went to Crete and all she bought me was this lousy T-shirt.' I was stunned. Then she said: 'You are going to wear it, aren't you?' "
Names have been changed.
DOS AND DON'TS
Be realistic. High expectations are bound to be dashed. Why should you expect a close and fulfilling relationship when you haven't chosen each other?
Remember she is not your mother, which means she isn't, necessarily, on your side. Watch who you complain about her to. Sympathetic female friends are probably better than husbands. You don't want your marriage affected.
Damage limitation may be the wisest option. It could be that a slightly cooler relationship is the best you can do.
Don't think that children will make you bond with your mother-in-law. They just offer lots more opportunities for conflict.
Saturday 15 September 2007
Friday 31 August 2007
Hallam Foe - how the original writer feels!
Please read my article about turning books into films. I interviewed Peter Jinks, author of the much acclaimed Hallam Foe, for it. The film - which stars Jamie Bell and Sophia Myles - is out today. The book is excellent by the way..
Having your book turned into a film, says Peter Jinks, author of Hallam Foe, is like “handing over your baby for a medical experiment.”
“You have to be aware that it’s going to be changed,” adds Jinks. “You can’t be surprised if it comes back with limbs in different places.”
Hallam Foe, an unusual coming of age tale about voyeurism and a boy’s tense relationship with his new stepmother, was Jinks’ first novel. It was critically acclaimed on publication, but not a huge best-seller, and Jinks admits that he was surprised when Scottish director David McKenzie (a former flat-mate of his) wanted to adapt it for the big screen.
“Everyone who writes a book hopes it will get optioned and made into a film,” says Jinks. “But I didn’t have any idea how it would work with my book. I knew that I liked Dave’s films and that he understood the underlying idea of the novel, but the book was just source material. They’ve been making their own piece of art.”
Hallam Foe – which stars Jamie Bell and Sophia Myles – is released today. But what made this particular book ripe for a film translation? And why are so many novels turned into films anyway?
“A book is something that actually exists,” says director McKenzie, whose two previous films, Young Adam and Asylum, were also based on novels. “It’s easier to galvanise people around a book than a screenplay, because it’s a tangible thing.
“Books are objects and people need objects to take hold of in the film business because there’s so much talk,” he adds. “It also means there’s a narrative there. With this book, I really liked the idea. It wasn’t your average coming of age stuff.”
But moving from the written word to the big screen is not always the easiest thing to do. Books are constantly turned into films, but for every big commercial and critical success – the Lord of the Rings films or The English Patient, for example - there are others which do not reach the heights they aspire to. The Da Vinci Code is one current case in point, but it joins many others including Captain Corelli’s Mandolin and Jonathan Safran Foer’s Everything is Illuminated.
“A good book does not necessarily make a good film,” says Nick Marston, who runs the film and television department at literary agents Curtis Brown. “It’s such a combination of different talents, a translation into a totally different medium and a genuinely collaborative procedure.”
Almost every week it seems as if a book is either being turned into a screenplay (recent examples include Lionel Shriver’s award winning We Need to Talk about Kevin, Susanna Clarke’s Jonathan Strange and Mr Norrell, and Philip Pullman’s His Dark Materials) or actually being released. Many of th4em are award-winning, from Rebecca to Brokeback Mountain.
“What we want is a really good story and a richness of character,” says Amelia Granger from film producers Working Title. “But what everyone is looking for is the holy grail – a manuscript that is brilliantly written, commercially appealing and yet prize winning!”
Granger is constantly on the look-out for new material, whether fiction or non-fiction. “True-life is often more exciting,” she says. “It all depends on the story and how good it is. If it’s original and feels like a world that hasn’t been seen before, then it may well be inspirational for a film.”
It’s true that film-makers don’t limit themselves simply to fiction. Fast Food Nation, Syriana and Munich are all based on non-fiction work, and in many ways, it’s the success of a book which helps to get it made.
“If a book has done well, it does give it a head start in terms of brand identity,” admits Nick Marston.
Last year, Marston set up a new in-house development and production arm at Curtis Brown. Its very existence demonstrates how many authors and agents have become more demanding when it comes to optioning their work.
“We did it because we felt that material wasn’t being fully developed and that there wasn’t enough imaginative twinning of writers and material,” says Marston. “It’s still the case that more things get optioned than get made, but some companies have really wised up and I don’t think we’re going to see such huge money coming out of the studios anymore.”
Amelia Granger agrees that in the past, “the creative process was being stifled,” by huge options on books which were then left languishing in development. She says that what authors and agents want now is an assurance that a film version of their book will actually get made.
“For example, we took on Ian McEwen’s Atonement for a director, Joe Wright (who made Pride and Prejudice) and a screenwriter, Christopher Hampton,” she says. “A creative approach was what was wanted and that was what we provided.”
For Peter Jinks the whole experience has been a delight, although he’s still overwhelmed by his visit to the set.
“I felt a bit like a ghost drifting around, but it was really emotional, a nice feeling,” he says. “It was a bit like seeing a dream become flesh.” And he adds that, although he’s currently writing a third novel, he has another ambition.
“I would like to write my own original screenplay,” he says.
Ends
Having your book turned into a film, says Peter Jinks, author of Hallam Foe, is like “handing over your baby for a medical experiment.”
“You have to be aware that it’s going to be changed,” adds Jinks. “You can’t be surprised if it comes back with limbs in different places.”
Hallam Foe, an unusual coming of age tale about voyeurism and a boy’s tense relationship with his new stepmother, was Jinks’ first novel. It was critically acclaimed on publication, but not a huge best-seller, and Jinks admits that he was surprised when Scottish director David McKenzie (a former flat-mate of his) wanted to adapt it for the big screen.
“Everyone who writes a book hopes it will get optioned and made into a film,” says Jinks. “But I didn’t have any idea how it would work with my book. I knew that I liked Dave’s films and that he understood the underlying idea of the novel, but the book was just source material. They’ve been making their own piece of art.”
Hallam Foe – which stars Jamie Bell and Sophia Myles – is released today. But what made this particular book ripe for a film translation? And why are so many novels turned into films anyway?
“A book is something that actually exists,” says director McKenzie, whose two previous films, Young Adam and Asylum, were also based on novels. “It’s easier to galvanise people around a book than a screenplay, because it’s a tangible thing.
“Books are objects and people need objects to take hold of in the film business because there’s so much talk,” he adds. “It also means there’s a narrative there. With this book, I really liked the idea. It wasn’t your average coming of age stuff.”
But moving from the written word to the big screen is not always the easiest thing to do. Books are constantly turned into films, but for every big commercial and critical success – the Lord of the Rings films or The English Patient, for example - there are others which do not reach the heights they aspire to. The Da Vinci Code is one current case in point, but it joins many others including Captain Corelli’s Mandolin and Jonathan Safran Foer’s Everything is Illuminated.
“A good book does not necessarily make a good film,” says Nick Marston, who runs the film and television department at literary agents Curtis Brown. “It’s such a combination of different talents, a translation into a totally different medium and a genuinely collaborative procedure.”
Almost every week it seems as if a book is either being turned into a screenplay (recent examples include Lionel Shriver’s award winning We Need to Talk about Kevin, Susanna Clarke’s Jonathan Strange and Mr Norrell, and Philip Pullman’s His Dark Materials) or actually being released. Many of th4em are award-winning, from Rebecca to Brokeback Mountain.
“What we want is a really good story and a richness of character,” says Amelia Granger from film producers Working Title. “But what everyone is looking for is the holy grail – a manuscript that is brilliantly written, commercially appealing and yet prize winning!”
Granger is constantly on the look-out for new material, whether fiction or non-fiction. “True-life is often more exciting,” she says. “It all depends on the story and how good it is. If it’s original and feels like a world that hasn’t been seen before, then it may well be inspirational for a film.”
It’s true that film-makers don’t limit themselves simply to fiction. Fast Food Nation, Syriana and Munich are all based on non-fiction work, and in many ways, it’s the success of a book which helps to get it made.
“If a book has done well, it does give it a head start in terms of brand identity,” admits Nick Marston.
Last year, Marston set up a new in-house development and production arm at Curtis Brown. Its very existence demonstrates how many authors and agents have become more demanding when it comes to optioning their work.
“We did it because we felt that material wasn’t being fully developed and that there wasn’t enough imaginative twinning of writers and material,” says Marston. “It’s still the case that more things get optioned than get made, but some companies have really wised up and I don’t think we’re going to see such huge money coming out of the studios anymore.”
Amelia Granger agrees that in the past, “the creative process was being stifled,” by huge options on books which were then left languishing in development. She says that what authors and agents want now is an assurance that a film version of their book will actually get made.
“For example, we took on Ian McEwen’s Atonement for a director, Joe Wright (who made Pride and Prejudice) and a screenwriter, Christopher Hampton,” she says. “A creative approach was what was wanted and that was what we provided.”
For Peter Jinks the whole experience has been a delight, although he’s still overwhelmed by his visit to the set.
“I felt a bit like a ghost drifting around, but it was really emotional, a nice feeling,” he says. “It was a bit like seeing a dream become flesh.” And he adds that, although he’s currently writing a third novel, he has another ambition.
“I would like to write my own original screenplay,” he says.
Ends
Tuesday 28 August 2007
My son reeled into the room and I knew something was horribly wrong...
Today I have a very sad article in the Daily Mail about a boy who died, suddenly, leaving his family devastated. They chose to donate his organs - helping many other people.
Here is the link to the article, http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=478232&in_page_id=1774&in_a_source=
Or here is it in full...
My son reeled into the room and I knew something was horribly wrong...
On this day four years ago, 16-year-old Martin Burton died suddenly from a brain haemorrhage. His parents, Nigel, 48, and Sue, 47, donated his organs for transplantation, saving one boy's life and helping many others. Here, Sue tells SARAH EBNER the tragic story of what happened to her son...
"Martin was hooked up to tubes and monitoring equipment, but he seemed peaceful. I couldn't believe we had lost him, even though I knew he was brain dead.
He was pink and warm, and looked as if he were asleep. I sat and held his hand for hours and hours.
We had decided to donate Martin's organs and were asked if we wanted to take him into theatre. I declined. I'd been there for 36 hours and at some point we had to make a break. But the hardest moment for me was walking out of that hospital. I knew I was leaving my son behind.
Martin's death was the most profound loss, something you cannot imagine until it happens. Losing a child is the wrong order of things. All your hopes, your plans, your dreams of their future and your future are shattered.
You have to get used to a new life with a big part missing for ever. And that's the hard part to accept: that it is for ever.
Immediately after Martin died, I was too upset to think about the boy who received Martin's heart. Now I do think about him, particularly on days like today, the anniversary of Martin's death. It's as important a day for his family as ours, and I don't doubt that his parents give thanks every day for our decision.
It was the school holidays. Martin was his usual boisterous self. He'd gone to bed fine, but in the early hours of August 27, I heard a thud. It sounded like he had fallen out of bed.
Martin was often noisy, so I didn't thud. It sounded like he had fallen out Martin was often noisy, so I didn't worry. But the noise continued, like a banging. I realise now he was probably staggering and hitting the walls and furniture.
I sat up in bed and shouted: 'Martin, what are you doing?' The banging continued, so I called out: 'Are you all right?' He appeared in my bedroom doorway. 'Are you all right?' I repeated.
He looked at me with a glazed, confused expression. I realise now his brain was shutting down; he probably couldn't see or hear me, and he certainly couldn't speak. I've re-lived the expression on his face millions of times.
Martin staggered towards the bed and collapsed on it. I thought it was concussion, so I shook him.
He then rolled over and fell on the floor. I didn't realise it at the time, but he was in a deep coma.
I now feel naïve that I didn't realise how serious it was, but he seemed fine when he went to bed.
When I couldn't wake Martin up, I rang for an ambulance and it took us straight to Grantham Hospital. Nigel, my husband, was working in the RAF in Las Vegas when this happened, while my elder son Chris was staying with his girlfriend. When we got to the hospital, Martin was whisked away and I was left in reception.
I was in a daze - it seemed unreal. After a while, a nurse told me Martin was really ill and suggested I phone somebody. I rang my parents.
When they arrived, we were taken to see Martin, who was on a life support machine. We were told he'd had a brain haemorrhage (bleeding in the brain) and were advised to tell Nigel to come home.
Martin was transferred to the Queen's Medical Centre in Nottingham at 5am. Three hours later, the consultant said the extent of the bleeding was so great that there was nothing they could do. He then asked if I would consider donating Martin's organs.
I immediately said yes. Although we had never discussed it, I was sure Nigel would agree. I think Martin would have wanted it, too.
He was young and healthy. He'd had no illness, no medication and no injuries. The only part of him that was damaged was his brain. I thought that if I could save one mother from going through the nightmare of losing someone, it was worth it.
And I did save a family from that hell because Martin's heart went to a 15-year-old boy who'd had only hours to live. Hopefully he will now live a long, healthy life.
But while I do think about that boy, there's no comfort for me in the donation. Maybe there is consolation in knowing Martin did not die in vain. But at the moment I still see it as them having what I want: they've got a healthy son.
Martin was kept alive on life support until Nigel got home. It took him three flights and he arrived at 9.30am the next day.
I sat by Martin's bedside for all that time. Apart from a dressing over the pressure gauge which had been inserted into his brain, he had no injuries to his face or body, so didn't look any different. It was as if he was still alive.
When Nigel and I saw each other, we were in floods of tears.
You have to sign an agreement for each individual organ. You can say yes to some and no to others, and you also decide, if the organs aren't fit to be used, whether you want them to be left in the body or taken for research.
We said yes to everything, but no to the research. I've never seen the donation as a violation of Martin's body, but I think I felt giving his organs for research would be.
Because he was a multiple organ donor, we had to wait until all the doctors were ready, which wasn't until 8pm that night. I didn't want to see Martin go, so the transplant co-ordinator accompanied him to theatre for me. Nigel and I then left the hospital. YOU choose if you want to know what happens to the organs and we decided we wanted information.
Martin's lungs, heart, liver, both kidneys and both corneas were donated. All the organs were used that night, or in the early hours of the following morning, apart from the corneas. They were frozen and I don't know if they've been used.
Except for his heart, Martin's other organs went to older people. His liver to a middle-aged man; his lungs to an elderly gentleman; one kidney to another elderly man; the other to an elderly woman.
I would have liked more of Martin's organs to have gone to children because I feel enormous empathy with the mother My Lifesaver of the boy who has Martin's heart.
But when we agreed to donate them we knew we had no say in what happened. They must go to the person who has the best chance of receiving them successfully and that's much more important than age.
Still, we would love to meet any of the recipients. It would be nice if the transplant teams around the country could encourage contact between the families by letter for a longer period of time - perhaps an exchange of photos to make it less anonymous for both families.
Currently, they can only send an anonymous thank-you letter, with transplant co-ordinators acting as go-betweens. But I do realise it must be hard for the recipient families to know what to say.
At the time, we didn't know why Martin had collapsed. He'd always seemed healthy. We now know that he'd had a brain haemorrhage because of an arteriovenous malformation of the brain, or AVM, and that it could have happened at any time. AVMs occur when blood vessels develop in a malformed way.
Blood is normally pumped by the heart to the brain via arteries. When it's in the brain it's nourished by the capillaries before going back through the veins.
When you have an AVM, you don't have these capillaries. This means there's pressure on the blood vessels, which can rupture.
The consultant who looked after Martin described it to me as being like a twig - fine one minute, then snapping. The bleed would have been so catastrophic that Martin's brain would have started to shut down in a few minutes.
The brain haemorrhage caused Martin's death, but that was caused by the AVM, something he was born with. He could have collapsed at school or out with his friends, but he happened to be in bed. I'm grateful for that because I hope in his last thoughts, he knew I was there.
It's now four years since Martin died, but life never goes back to normal. The pain never goes away, but you learn to cope with it.
At first, I couldn't remember Martin's life; I could only remember the death.
It was a long time, maybe a year, before I could think back to the good times. But memories are there for ever. Now I remember Martin with a lot of smiles. He was that sort of a person."
For more details about the Donor Family Network - a charity run by donor families for other donor families - see www.donorfamilynetwork.co.uk.
Here is the link to the article, http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=478232&in_page_id=1774&in_a_source=
Or here is it in full...
My son reeled into the room and I knew something was horribly wrong...
On this day four years ago, 16-year-old Martin Burton died suddenly from a brain haemorrhage. His parents, Nigel, 48, and Sue, 47, donated his organs for transplantation, saving one boy's life and helping many others. Here, Sue tells SARAH EBNER the tragic story of what happened to her son...
"Martin was hooked up to tubes and monitoring equipment, but he seemed peaceful. I couldn't believe we had lost him, even though I knew he was brain dead.
He was pink and warm, and looked as if he were asleep. I sat and held his hand for hours and hours.
We had decided to donate Martin's organs and were asked if we wanted to take him into theatre. I declined. I'd been there for 36 hours and at some point we had to make a break. But the hardest moment for me was walking out of that hospital. I knew I was leaving my son behind.
Martin's death was the most profound loss, something you cannot imagine until it happens. Losing a child is the wrong order of things. All your hopes, your plans, your dreams of their future and your future are shattered.
You have to get used to a new life with a big part missing for ever. And that's the hard part to accept: that it is for ever.
Immediately after Martin died, I was too upset to think about the boy who received Martin's heart. Now I do think about him, particularly on days like today, the anniversary of Martin's death. It's as important a day for his family as ours, and I don't doubt that his parents give thanks every day for our decision.
It was the school holidays. Martin was his usual boisterous self. He'd gone to bed fine, but in the early hours of August 27, I heard a thud. It sounded like he had fallen out of bed.
Martin was often noisy, so I didn't thud. It sounded like he had fallen out Martin was often noisy, so I didn't worry. But the noise continued, like a banging. I realise now he was probably staggering and hitting the walls and furniture.
I sat up in bed and shouted: 'Martin, what are you doing?' The banging continued, so I called out: 'Are you all right?' He appeared in my bedroom doorway. 'Are you all right?' I repeated.
He looked at me with a glazed, confused expression. I realise now his brain was shutting down; he probably couldn't see or hear me, and he certainly couldn't speak. I've re-lived the expression on his face millions of times.
Martin staggered towards the bed and collapsed on it. I thought it was concussion, so I shook him.
He then rolled over and fell on the floor. I didn't realise it at the time, but he was in a deep coma.
I now feel naïve that I didn't realise how serious it was, but he seemed fine when he went to bed.
When I couldn't wake Martin up, I rang for an ambulance and it took us straight to Grantham Hospital. Nigel, my husband, was working in the RAF in Las Vegas when this happened, while my elder son Chris was staying with his girlfriend. When we got to the hospital, Martin was whisked away and I was left in reception.
I was in a daze - it seemed unreal. After a while, a nurse told me Martin was really ill and suggested I phone somebody. I rang my parents.
When they arrived, we were taken to see Martin, who was on a life support machine. We were told he'd had a brain haemorrhage (bleeding in the brain) and were advised to tell Nigel to come home.
Martin was transferred to the Queen's Medical Centre in Nottingham at 5am. Three hours later, the consultant said the extent of the bleeding was so great that there was nothing they could do. He then asked if I would consider donating Martin's organs.
I immediately said yes. Although we had never discussed it, I was sure Nigel would agree. I think Martin would have wanted it, too.
He was young and healthy. He'd had no illness, no medication and no injuries. The only part of him that was damaged was his brain. I thought that if I could save one mother from going through the nightmare of losing someone, it was worth it.
And I did save a family from that hell because Martin's heart went to a 15-year-old boy who'd had only hours to live. Hopefully he will now live a long, healthy life.
But while I do think about that boy, there's no comfort for me in the donation. Maybe there is consolation in knowing Martin did not die in vain. But at the moment I still see it as them having what I want: they've got a healthy son.
Martin was kept alive on life support until Nigel got home. It took him three flights and he arrived at 9.30am the next day.
I sat by Martin's bedside for all that time. Apart from a dressing over the pressure gauge which had been inserted into his brain, he had no injuries to his face or body, so didn't look any different. It was as if he was still alive.
When Nigel and I saw each other, we were in floods of tears.
You have to sign an agreement for each individual organ. You can say yes to some and no to others, and you also decide, if the organs aren't fit to be used, whether you want them to be left in the body or taken for research.
We said yes to everything, but no to the research. I've never seen the donation as a violation of Martin's body, but I think I felt giving his organs for research would be.
Because he was a multiple organ donor, we had to wait until all the doctors were ready, which wasn't until 8pm that night. I didn't want to see Martin go, so the transplant co-ordinator accompanied him to theatre for me. Nigel and I then left the hospital. YOU choose if you want to know what happens to the organs and we decided we wanted information.
Martin's lungs, heart, liver, both kidneys and both corneas were donated. All the organs were used that night, or in the early hours of the following morning, apart from the corneas. They were frozen and I don't know if they've been used.
Except for his heart, Martin's other organs went to older people. His liver to a middle-aged man; his lungs to an elderly gentleman; one kidney to another elderly man; the other to an elderly woman.
I would have liked more of Martin's organs to have gone to children because I feel enormous empathy with the mother My Lifesaver of the boy who has Martin's heart.
But when we agreed to donate them we knew we had no say in what happened. They must go to the person who has the best chance of receiving them successfully and that's much more important than age.
Still, we would love to meet any of the recipients. It would be nice if the transplant teams around the country could encourage contact between the families by letter for a longer period of time - perhaps an exchange of photos to make it less anonymous for both families.
Currently, they can only send an anonymous thank-you letter, with transplant co-ordinators acting as go-betweens. But I do realise it must be hard for the recipient families to know what to say.
At the time, we didn't know why Martin had collapsed. He'd always seemed healthy. We now know that he'd had a brain haemorrhage because of an arteriovenous malformation of the brain, or AVM, and that it could have happened at any time. AVMs occur when blood vessels develop in a malformed way.
Blood is normally pumped by the heart to the brain via arteries. When it's in the brain it's nourished by the capillaries before going back through the veins.
When you have an AVM, you don't have these capillaries. This means there's pressure on the blood vessels, which can rupture.
The consultant who looked after Martin described it to me as being like a twig - fine one minute, then snapping. The bleed would have been so catastrophic that Martin's brain would have started to shut down in a few minutes.
The brain haemorrhage caused Martin's death, but that was caused by the AVM, something he was born with. He could have collapsed at school or out with his friends, but he happened to be in bed. I'm grateful for that because I hope in his last thoughts, he knew I was there.
It's now four years since Martin died, but life never goes back to normal. The pain never goes away, but you learn to cope with it.
At first, I couldn't remember Martin's life; I could only remember the death.
It was a long time, maybe a year, before I could think back to the good times. But memories are there for ever. Now I remember Martin with a lot of smiles. He was that sort of a person."
For more details about the Donor Family Network - a charity run by donor families for other donor families - see www.donorfamilynetwork.co.uk.
Saturday 18 August 2007
‘My Scottish ancestors were heroes’
Hello
This weekend I have a "First person" article in the FT magazine. It is about a fascinating woman called Pearl Duncan, who has a great story to tell about her family history.
You can read it online here, http://www.ft.com/cms/s/6d4f7fc4-4a09-11dc-9ffe-0000779fd2ac.html
Or here....
‘My Scottish ancestors were heroes’
‘Many black Americans are afraid, as I was initially, of finding a slave trader in their family tree,’ says Pearl Duncan
First Person: Pearl Duncan
As told to Sarah Ebner
Published: August 18 2007 00:36
When I started to look into my family tree, I couldn’t have imagined the conflict it would cause. I spent 10 years researching my ancestors, and a lot of people didn’t like what I had to say at the end of it. I’d tracked the cultural history that shaped my DNA in America, Europe and Africa, and discovered that not all white men in the British colonies who fathered children with black women in the 18th century were evil slavers. I found at least one ancestor who was an abolitionist and who did not abandon his children.
My family emigrated from Jamaica to New York when I was young, and I was always fascinated by where I had come from. My parents told me we were descended from the Maroons, or runaway slaves. Years later, when I went to our old family graves just outside Kingston, Jamaica, I couldn’t believe it when I found our birth and baptismal records dating back to the 1700s.
I now know that my roots are incredibly diverse: I am descended from slaves; from free people who worked and bought their freedom; from Maroon warriors who waged military rebellions in Jamaica against slavery; also from British merchants, and European and African nobility.
My Jamaican grandmother’s name was Rebecca Smellie and her ancestor was John Smellie, a Scottish merchant. In 1726 in Jamaica he had a child, George, with a “free negro” whose name was Ann Roberts. Even though there were penalties at that time – huge fines, deportation, imprisonment – for keeping records of black children, John Smellie left birth and baptism records with George’s name on them.
Three of John Smellie’s Scottish descendants settled in Jamaica on land he left them. One of them was called William Smellie and he died in 1800. He was an abolitionist, and when I found his will it showed that he left the maximum amount allowed under the slavery laws to his mixed-race children and their mother. Finding out about both these men changed everything for me. I had thought I was learning about the awful people who owned slaves, but instead I was discovering heroism, and people who stood up for what they thought was right.
I followed up these discoveries with research in Scotland, hiring Scottish genealogists and local historians. It turned out that John Smellie was of noble birth. I sent the records to the Court of The Lord Lyon, the heraldic authority for Scotland, which said I qualified for a coat of arms. I now have one that reflects the diversity of my ancestry.
My research also took me to Ghana. I tracked down dozens of ancestors and collected DNA from Ghanaian families whose names matched nicknames still used in my family. I spent a lot of time on the linguistic research, and DNA confirmed the connection. As far as I know, I was one of the first people in the world to use DNA in this way.
I’ve written a book about my research but publishers seem to think it’s too contentious to publish. Talking about black ancestors who rebelled apparently goes against how Americans see these people – slaves were victims, not rebels. Editors are happy to accept stories about slaves who escaped one at a time, but they don’t like the idea that they grouped together and stood up for themselves. That’s too threatening.
I’ve also learned that many black Americans are afraid, as I was initially, of finding a slave trader in their family tree, so they don’t really want to talk about their European ancestors. I got into trouble with my black friends for saying that John Smellie was a more caring man than many other colonials because he left a record of his child.
When you start looking into your genealogy, you have to come to terms with admirable and despicable behaviour, and that’s what I’ve done.
This weekend I have a "First person" article in the FT magazine. It is about a fascinating woman called Pearl Duncan, who has a great story to tell about her family history.
You can read it online here, http://www.ft.com/cms/s/6d4f7fc4-4a09-11dc-9ffe-0000779fd2ac.html
Or here....
‘My Scottish ancestors were heroes’
‘Many black Americans are afraid, as I was initially, of finding a slave trader in their family tree,’ says Pearl Duncan
First Person: Pearl Duncan
As told to Sarah Ebner
Published: August 18 2007 00:36
When I started to look into my family tree, I couldn’t have imagined the conflict it would cause. I spent 10 years researching my ancestors, and a lot of people didn’t like what I had to say at the end of it. I’d tracked the cultural history that shaped my DNA in America, Europe and Africa, and discovered that not all white men in the British colonies who fathered children with black women in the 18th century were evil slavers. I found at least one ancestor who was an abolitionist and who did not abandon his children.
My family emigrated from Jamaica to New York when I was young, and I was always fascinated by where I had come from. My parents told me we were descended from the Maroons, or runaway slaves. Years later, when I went to our old family graves just outside Kingston, Jamaica, I couldn’t believe it when I found our birth and baptismal records dating back to the 1700s.
I now know that my roots are incredibly diverse: I am descended from slaves; from free people who worked and bought their freedom; from Maroon warriors who waged military rebellions in Jamaica against slavery; also from British merchants, and European and African nobility.
My Jamaican grandmother’s name was Rebecca Smellie and her ancestor was John Smellie, a Scottish merchant. In 1726 in Jamaica he had a child, George, with a “free negro” whose name was Ann Roberts. Even though there were penalties at that time – huge fines, deportation, imprisonment – for keeping records of black children, John Smellie left birth and baptism records with George’s name on them.
Three of John Smellie’s Scottish descendants settled in Jamaica on land he left them. One of them was called William Smellie and he died in 1800. He was an abolitionist, and when I found his will it showed that he left the maximum amount allowed under the slavery laws to his mixed-race children and their mother. Finding out about both these men changed everything for me. I had thought I was learning about the awful people who owned slaves, but instead I was discovering heroism, and people who stood up for what they thought was right.
I followed up these discoveries with research in Scotland, hiring Scottish genealogists and local historians. It turned out that John Smellie was of noble birth. I sent the records to the Court of The Lord Lyon, the heraldic authority for Scotland, which said I qualified for a coat of arms. I now have one that reflects the diversity of my ancestry.
My research also took me to Ghana. I tracked down dozens of ancestors and collected DNA from Ghanaian families whose names matched nicknames still used in my family. I spent a lot of time on the linguistic research, and DNA confirmed the connection. As far as I know, I was one of the first people in the world to use DNA in this way.
I’ve written a book about my research but publishers seem to think it’s too contentious to publish. Talking about black ancestors who rebelled apparently goes against how Americans see these people – slaves were victims, not rebels. Editors are happy to accept stories about slaves who escaped one at a time, but they don’t like the idea that they grouped together and stood up for themselves. That’s too threatening.
I’ve also learned that many black Americans are afraid, as I was initially, of finding a slave trader in their family tree, so they don’t really want to talk about their European ancestors. I got into trouble with my black friends for saying that John Smellie was a more caring man than many other colonials because he left a record of his child.
When you start looking into your genealogy, you have to come to terms with admirable and despicable behaviour, and that’s what I’ve done.
Wednesday 25 July 2007
Who says single men can't adopt?
I have an article in the Times about single men who choose to adopt. It's really very interesting indeed (trust me!)
Here is the link...
Or here is the text.....
Who says lone men can’t adopt?
The number of single male adopters in Britain is small but growing. Sarah Ebner talks to three happy fathers
Last year 3,700 children were adopted from care. Many more, desperate for a family, were disappointed – but adoption agencies have begun to look farther afield. Unmarried heterosexual and gay couples can now adopt jointly, while another small but growing part of the adoptive parent network is single people. And while it’s true that most single adopters are female, there are some men, too.
Single men are probably the most maligned group of adoptive parents, and are subjected to intense questioning about why they want to become fathers.
Although it is not illegal for a single man to adopt a female child, it happens rarely. Single male adopters tend to adopt boys who are slightly older than the average. As in any adoption, the child’s needs must be paramount.
David Holmes, chief executive of the British Association for Adoption and Fostering (BAAF), says: “It is a myth that single men can’t adopt. The number of single male adopters is small but growing. What children need most is security and stability, and in most cases this is more important than the gender of the carer.
“We know that single people can do just as well as couples, and we encourage adoption agencies to think about what single men and women have to offer. The national minimum standards for adoption state that people who are interested in becoming adoptive parents will be welcomed without prejudice.”
Here, three single men recount how they became adoptive fathers.
— Richard Stuart, 42, lives in Sandhurst, Berkshire, with his two adopted sons, Paul, 18, and Aron, 12. Richard, who also fosters two teenage boys, looks after the children full-time.
“I thought I’d have all the normal things in life – kids, a wife and a dog – but it doesn’t always work out like that,” he says. “When I was 23, a close friend died. I took her loss badly. I got to 27 and hadn’t had any serious relationships since her death. But I’m an impatient person and wasn’t happy. I had always wanted to be a dad, and began to think that I would never have kids.
“I was surprised when I found out that single men could adopt. However, my local authority said that although they were legally obliged to carry out all the checks on me, they had never taken on a single male adopter before.
“It took me three years with different agencies to be approved. Eventually I went to an independent adoption service and they took me on. I had to be thoroughly checked, but that didn’t bother me. If you can’t put up with the checks and intrusiveness then you shouldn’t try to adopt in the first place. I’d have given everything I had to be a dad, so I was prepared to be harassed.
“Once I was approved, I went to a matching panel. Paul, who was nearly 10, had been in a care home and I was his last chance. He really wanted a family, and there was something about him that made me want him. We clicked.
“Everything changed after Paul came. I had no social life and couldn’t go anywhere without him following me. But it was what I wanted. I chose to do it. However, it was an issue that I was a single man. I ran a huge Cub pack, and once Paul came the numbers nosedived. People thought that I must be odd, or that Paul was potentially dangerous.
“I lost some friends when Paul arrived but made new ones, too. I didn’t really care what people thought of me but I did care what they thought of Paul.
“Two years later I got Aron, who was then 6, and I now sit on an adoption panel. I don’t have relationships because I don’t have time, but I don’t think the boys miss having a mum. I’d have liked to adopt a girl but it was difficult enough getting a boy as a single man.
“I’m exceptionally proud of the boys, even though they completely wind me up. They really do complete my life, and I have no regrets.”
— Thierry Lambert, 34, lives in Wiltshire with his adopted son, Liam, 8. He works for Wiltshire police. “I first met Liam in April last year. I walked into the room at his foster home and he looked up and said, ‘Hello Dad, I’m just having a sandwich, I’ll be there in a minute’. It felt incredible. When I left, I shed more tears than I’d ever done in my life. I was so happy.
“I had always wanted children and was in a seven-year relationship where we were planning to have them, but we broke up in 2003. I was just turning 30 and wasn’t keen to start over again. What if I met someone new, then waited more years to have a child, only for it not to happen again?
“I came across adoption on the internet and it seemed like a great idea. For me, the child was more important than the partner, and adoption cut out that relationship completely. I contacted Wiltshire social services and they didn’t think it was a problem. I went on a course which was very female-orientated (everything was about mothers), but I met nice people and no one was especially negative. However, some people did ask if I was gay.
“I also had an in-depth assessment. Every angle was covered – my social group, my work, what support I had, even how a child would cope with me being diabetic.
“It took nearly a year to get approval. I did have relationships during that time but they didn’t last. The adoption was my priority.
“Liam’s father had died and he hadn’t had a particularly good experience with his mother. Because of this he found it difficult to trust women. He needed a father.
“I was sent the forms of 20 possible children, and when I saw Liam I said, ‘That’s the one. That’s my son’.
“Liam moved in last May and I’ve had to adjust more than him – being more tired, more responsible, making sure that he gets fed and bathed and does his homework.
“But it’s completely worth it. Liam makes me laugh every day and I feel I’ve known him since he was born. I adopted him on October 10, 2006 and he says that I’m his real dad. I feel this was meant to be.”
— John Williams*, 47, lives on Anglesey in Wales with his two adopted sons, *Keith, 21, and *Jamie, 20. He also fosters two boys aged 11 and 12, and looks after the children full-time.
“When I was told that I would be adopting two brothers aged 9 and 10, I was concerned. They sounded so grown-up and I thought that they would have missed out on so much. But when I met the boys I couldn’t believe how small they were. I knew they were the ones for me.
“I’ve always loved children but although I was married briefly, we had no kids. After we broke up in 1992 I began thinking about adoption. I wanted a family but wasn’t keen on another relationship and didn’t want to risk getting hurt again.
“I contacted Barnardo’s, who gave me a very thorough assessment. It wasn’t easy but I don’t think that it should be easy. I told my social worker right from the start that I would be open and honest. I had nothing to hide, and wanted to be a father more than anything. However, it is hard when you read so much about male abusers. You want to say, ‘That’s not every man’.
“At that time I worked for the Ministry of Defence, and because I worked I was told that I would have to adopt school-age children. I was expecting a five-year-old!
“The boys had been in foster care for more than three years. They felt very much that they were treated differently from the foster carer’s children and wanted a family of their own. Keith had written a letter saying that he wanted to live in the country with animals, and I was delighted to read that. It was my situation exactly, and he has loved being outdoors from Day 1. Meanwhile, Jamie, who barely spoke when he was with the foster carer, hasn’t stopped talking since he came here! He knew immediately that he belonged.
“I told Jamie and Keith that there were lots of other children who would like to be adopted, but it was important to them that their adoption was special. They suggested fostering.
“I wouldn’t change what I have for the world. I think how empty my life was before and take great pleasure in my sons’ achievements. Yes, I would have liked to have met someone and had children, but that didn’t happen. I haven’t had relationships since getting the boys, but my life is full and we are happy. I definitely feel that the boys are mine.”
* Names have been changed.
Here is the link...
Or here is the text.....
Who says lone men can’t adopt?
The number of single male adopters in Britain is small but growing. Sarah Ebner talks to three happy fathers
Last year 3,700 children were adopted from care. Many more, desperate for a family, were disappointed – but adoption agencies have begun to look farther afield. Unmarried heterosexual and gay couples can now adopt jointly, while another small but growing part of the adoptive parent network is single people. And while it’s true that most single adopters are female, there are some men, too.
Single men are probably the most maligned group of adoptive parents, and are subjected to intense questioning about why they want to become fathers.
Although it is not illegal for a single man to adopt a female child, it happens rarely. Single male adopters tend to adopt boys who are slightly older than the average. As in any adoption, the child’s needs must be paramount.
David Holmes, chief executive of the British Association for Adoption and Fostering (BAAF), says: “It is a myth that single men can’t adopt. The number of single male adopters is small but growing. What children need most is security and stability, and in most cases this is more important than the gender of the carer.
“We know that single people can do just as well as couples, and we encourage adoption agencies to think about what single men and women have to offer. The national minimum standards for adoption state that people who are interested in becoming adoptive parents will be welcomed without prejudice.”
Here, three single men recount how they became adoptive fathers.
— Richard Stuart, 42, lives in Sandhurst, Berkshire, with his two adopted sons, Paul, 18, and Aron, 12. Richard, who also fosters two teenage boys, looks after the children full-time.
“I thought I’d have all the normal things in life – kids, a wife and a dog – but it doesn’t always work out like that,” he says. “When I was 23, a close friend died. I took her loss badly. I got to 27 and hadn’t had any serious relationships since her death. But I’m an impatient person and wasn’t happy. I had always wanted to be a dad, and began to think that I would never have kids.
“I was surprised when I found out that single men could adopt. However, my local authority said that although they were legally obliged to carry out all the checks on me, they had never taken on a single male adopter before.
“It took me three years with different agencies to be approved. Eventually I went to an independent adoption service and they took me on. I had to be thoroughly checked, but that didn’t bother me. If you can’t put up with the checks and intrusiveness then you shouldn’t try to adopt in the first place. I’d have given everything I had to be a dad, so I was prepared to be harassed.
“Once I was approved, I went to a matching panel. Paul, who was nearly 10, had been in a care home and I was his last chance. He really wanted a family, and there was something about him that made me want him. We clicked.
“Everything changed after Paul came. I had no social life and couldn’t go anywhere without him following me. But it was what I wanted. I chose to do it. However, it was an issue that I was a single man. I ran a huge Cub pack, and once Paul came the numbers nosedived. People thought that I must be odd, or that Paul was potentially dangerous.
“I lost some friends when Paul arrived but made new ones, too. I didn’t really care what people thought of me but I did care what they thought of Paul.
“Two years later I got Aron, who was then 6, and I now sit on an adoption panel. I don’t have relationships because I don’t have time, but I don’t think the boys miss having a mum. I’d have liked to adopt a girl but it was difficult enough getting a boy as a single man.
“I’m exceptionally proud of the boys, even though they completely wind me up. They really do complete my life, and I have no regrets.”
— Thierry Lambert, 34, lives in Wiltshire with his adopted son, Liam, 8. He works for Wiltshire police. “I first met Liam in April last year. I walked into the room at his foster home and he looked up and said, ‘Hello Dad, I’m just having a sandwich, I’ll be there in a minute’. It felt incredible. When I left, I shed more tears than I’d ever done in my life. I was so happy.
“I had always wanted children and was in a seven-year relationship where we were planning to have them, but we broke up in 2003. I was just turning 30 and wasn’t keen to start over again. What if I met someone new, then waited more years to have a child, only for it not to happen again?
“I came across adoption on the internet and it seemed like a great idea. For me, the child was more important than the partner, and adoption cut out that relationship completely. I contacted Wiltshire social services and they didn’t think it was a problem. I went on a course which was very female-orientated (everything was about mothers), but I met nice people and no one was especially negative. However, some people did ask if I was gay.
“I also had an in-depth assessment. Every angle was covered – my social group, my work, what support I had, even how a child would cope with me being diabetic.
“It took nearly a year to get approval. I did have relationships during that time but they didn’t last. The adoption was my priority.
“Liam’s father had died and he hadn’t had a particularly good experience with his mother. Because of this he found it difficult to trust women. He needed a father.
“I was sent the forms of 20 possible children, and when I saw Liam I said, ‘That’s the one. That’s my son’.
“Liam moved in last May and I’ve had to adjust more than him – being more tired, more responsible, making sure that he gets fed and bathed and does his homework.
“But it’s completely worth it. Liam makes me laugh every day and I feel I’ve known him since he was born. I adopted him on October 10, 2006 and he says that I’m his real dad. I feel this was meant to be.”
— John Williams*, 47, lives on Anglesey in Wales with his two adopted sons, *Keith, 21, and *Jamie, 20. He also fosters two boys aged 11 and 12, and looks after the children full-time.
“When I was told that I would be adopting two brothers aged 9 and 10, I was concerned. They sounded so grown-up and I thought that they would have missed out on so much. But when I met the boys I couldn’t believe how small they were. I knew they were the ones for me.
“I’ve always loved children but although I was married briefly, we had no kids. After we broke up in 1992 I began thinking about adoption. I wanted a family but wasn’t keen on another relationship and didn’t want to risk getting hurt again.
“I contacted Barnardo’s, who gave me a very thorough assessment. It wasn’t easy but I don’t think that it should be easy. I told my social worker right from the start that I would be open and honest. I had nothing to hide, and wanted to be a father more than anything. However, it is hard when you read so much about male abusers. You want to say, ‘That’s not every man’.
“At that time I worked for the Ministry of Defence, and because I worked I was told that I would have to adopt school-age children. I was expecting a five-year-old!
“The boys had been in foster care for more than three years. They felt very much that they were treated differently from the foster carer’s children and wanted a family of their own. Keith had written a letter saying that he wanted to live in the country with animals, and I was delighted to read that. It was my situation exactly, and he has loved being outdoors from Day 1. Meanwhile, Jamie, who barely spoke when he was with the foster carer, hasn’t stopped talking since he came here! He knew immediately that he belonged.
“I told Jamie and Keith that there were lots of other children who would like to be adopted, but it was important to them that their adoption was special. They suggested fostering.
“I wouldn’t change what I have for the world. I think how empty my life was before and take great pleasure in my sons’ achievements. Yes, I would have liked to have met someone and had children, but that didn’t happen. I haven’t had relationships since getting the boys, but my life is full and we are happy. I definitely feel that the boys are mine.”
* Names have been changed.
Wednesday 6 June 2007
Hired Gunn
Today I have an interview with Ali Gunn in the Guardian. She is the literary agent who now advises the Tories on lifestyle and women's issues. We met up a few weeks ago, and although I was expecting her to be very scary, she actually wasn't! I think that might be because she was worried about how she came across. She told me a few times that she didn't like talking about herself. "I like talking about other people," she said. "That's what I do."
Anyway, here is the interview...(or to see it online, cut and paste this link:
http://politics.guardian.co.uk/conservatives/story/0,,2096420,00.html)
Hired Gunn
One of London's leading literary agents, Ali Gunn has been advising the Conservative party on 'lifestyle' issues for the past year. Sarah Ebner hears her views on class, Cameron and the women's vote
Sarah Ebner
Wednesday June 6, 2007
Guardian
Ali Gunn is a reluctant interviewee. It has taken months of cajoling to persuade the Tories' first "Head of lifestyle and features" to talk, and she is visibly uncomfortable. "This whole thing is terrifying me," she says, with only a half smile. "In 20 years of dealing with the media, I have only ever done one other interview, and that was for Publishing News. Now I won't give one for another 20 years."
Gunn has long been known in the publishing world as a tough literary agent, noted for the huge advances she negotiates for her clients. She represents celebrities such as Nancy Dell'Olio and Carol Thatcher, as well as best-selling novelists including Jenny Colgan (who recently landed a £1m advance to write two new novels).
Almost a year ago, Gunn was asked to lend her expertise to the Conservative party, after a mutual acquaintance set up a meeting between her and David Cameron's closest adviser, Steve Hilton. She is now an important part of Cameron's coterie, working for the party "at least" one day a week.
It has been said that her key responsibility is to persuade women to vote Tory, but Gunn says her remit is wider than that, explaining, "What I'm actually doing is looking, overall, at what we're doing with all our people in all our areas. It's much more about engaging the media and the electorate in our key personalities and our policies and not just about women. It never has been."
But it is also true that now, more than ever, the Conservative Party is frantically reaching out to women. The Tories' dismal electoral outings over the past 10 years haven't been helped by their dearth of women MPs (at the last election, just 9% of Tory MPs were women, compared to Labour's 27.5%). Cameron has therefore been making changes, with women now accounting for around 33% of the Tory candidates selected for the next election. Whether they are in winnable seats remains to be seen. They certainly need to be - as Theresa May has pointed out, there are fewer women in the shadow cabinet than men with the name of David.
While her remit may extend beyond the women's vote, Gunn notes that she is "working on a big new campaign about equal pay ... It's a cause that's very close to my heart, having worked over the years for many organisations where, not necessarily me, but other women were woefully underpaid. It all goes back to being a working mother as well. It is very hard to juggle your life and get childcare at the right times. What do you do in school holidays and at half-term? Your life is a constant negotiation.
"David and his team believe in women. He knows that women make up over half the workforce. He is not a traditionalist. He believes in flexible working hours. He believes that if you want to stay at home, that's fine, but if you want to go to work, that's absolutely fine as well. I think he is probably the most modern leader the Tories have had in 30 years."
Warming to her theme, Gunn dismisses the Lib Dems as being a "busted flush" and is openly hostile to Labour's new leader. "I think life under Gordon Brown is going to be pretty miserable," she says, and, when I ask if Cameron is better for women than Brown, she nods vigorously. "Sans doute," she says, "for women and men."
She is married to Nick Pople, head of an investment fund involved with environmental technology businesses and the couple have a four-year-old son, Jack. Gunn says, strikingly, that she suffers from none of the guilt that consumes many working mothers. "For me - and this is purely for me - I believe I am a better example for my son, as a mother and as a woman who works incredibly hard and wants to be there for him as much as I can. That's my choice."
Indeed, her personal philosophy appears to be perfect for the Cameron-led Tories. She insists that, although she had a private education, she doesn't believe in class. "I was brought up to believe in meritocracy, I wasn't brought up to believe in class," she says. "I was brought up to believe that if you work hard, hopefully you will get to be where you want to be and what you want to be."
Now 38, Gunn grew up in London's Notting Hill and attended Haberdashers' Aske's School for Girls, then boarded at Repton. But she won't be drawn on the current grammar school debate ("I'm not going to comment on that, because it's not my area of expertise"). However, she says she has always been interested in politics, and turned down a place to read law at Cambridge in order to read politics at Bristol.
Her father, John, is one of Britain's leading investors in smaller businesses, but she says her parents were not interested in politics. She notes, though, that her mother's experience of growing up in and leaving communist East Germany was a major influence in her decision to vote Conservative. "My mother escaped from the Berlin wall three days before it was finished, and left her whole family behind. We used to go through Checkpoint Charlie like other people go to Bognor Regis on holiday, and we used to try and help them as much as we could, emotionally and fiscally.
"With what my mother went through, under the thumb of communism, it would have been very strange for me not to have believed in the free market economy and the right of free speech. I always used to call myself a Whig actually. I believed in being strong on law and order without being fascistic, but also liberal on the social agenda, women's rights, that sort of thing."
Gunn made her name in publishing while working at the big literary agency Curtis Brown. She admits that being a Tory in the traditionally left-of-centre publishing world has not always been easy. "You absolutely did not declare your political affiliation," she says of the early days of her career.
When she left Curtis Brown to set up on her own 18 months ago, rumours abounded. Gunn initially insists that it was to "pursue my own opportunities". Later, however, she explains that "one of the major reasons for leaving a big agency which was run by men ... was to get more control over my life. I can take my son to school, and sometimes pick him up, and that makes me happier than anything."
She is also extremely happy to have become involved with the Busoga Trust (busogatrust.co.uk), a charity which seeks to provide clean water in rural Uganda. "What attracted me," she says, "was that in some small way it was helping to empower women in Uganda, whose lives were hitherto spent fetching and carrying water. Women are the mainstay of family society in Uganda, and if, through water, we can help them to help themselves, that has to be good, right?"
Gunn says she "decided what my priorities were in my life a couple of years ago. Trying to get the Tories elected would be one of them, definitely, and trying to get our message across, not just to women, but to everybody. Another would obviously be looking after my son, and also Chelsea winning the league next season. I am driven - yes, very - by the fact that I don't want to fail," she adds. "And also by the fact that I want to provide a good future for Jack."
Gunn is something of a contradiction. She is articulate but appears hesitant; and while she is clearly tough, she appears worried about how she is going to come across during the interview - she has a crib sheet with her, and ponders each answer carefully. Although she has a reputation for negotiating the biggest possible deals for her clients, she is charging the Tories far less than her usual rate. "Sometimes you have to do things because you really believe in them," she says firmly, "not for the money."
Anyway, here is the interview...(or to see it online, cut and paste this link:
http://politics.guardian.co.uk/conservatives/story/0,,2096420,00.html)
Hired Gunn
One of London's leading literary agents, Ali Gunn has been advising the Conservative party on 'lifestyle' issues for the past year. Sarah Ebner hears her views on class, Cameron and the women's vote
Sarah Ebner
Wednesday June 6, 2007
Guardian
Ali Gunn is a reluctant interviewee. It has taken months of cajoling to persuade the Tories' first "Head of lifestyle and features" to talk, and she is visibly uncomfortable. "This whole thing is terrifying me," she says, with only a half smile. "In 20 years of dealing with the media, I have only ever done one other interview, and that was for Publishing News. Now I won't give one for another 20 years."
Gunn has long been known in the publishing world as a tough literary agent, noted for the huge advances she negotiates for her clients. She represents celebrities such as Nancy Dell'Olio and Carol Thatcher, as well as best-selling novelists including Jenny Colgan (who recently landed a £1m advance to write two new novels).
Almost a year ago, Gunn was asked to lend her expertise to the Conservative party, after a mutual acquaintance set up a meeting between her and David Cameron's closest adviser, Steve Hilton. She is now an important part of Cameron's coterie, working for the party "at least" one day a week.
It has been said that her key responsibility is to persuade women to vote Tory, but Gunn says her remit is wider than that, explaining, "What I'm actually doing is looking, overall, at what we're doing with all our people in all our areas. It's much more about engaging the media and the electorate in our key personalities and our policies and not just about women. It never has been."
But it is also true that now, more than ever, the Conservative Party is frantically reaching out to women. The Tories' dismal electoral outings over the past 10 years haven't been helped by their dearth of women MPs (at the last election, just 9% of Tory MPs were women, compared to Labour's 27.5%). Cameron has therefore been making changes, with women now accounting for around 33% of the Tory candidates selected for the next election. Whether they are in winnable seats remains to be seen. They certainly need to be - as Theresa May has pointed out, there are fewer women in the shadow cabinet than men with the name of David.
While her remit may extend beyond the women's vote, Gunn notes that she is "working on a big new campaign about equal pay ... It's a cause that's very close to my heart, having worked over the years for many organisations where, not necessarily me, but other women were woefully underpaid. It all goes back to being a working mother as well. It is very hard to juggle your life and get childcare at the right times. What do you do in school holidays and at half-term? Your life is a constant negotiation.
"David and his team believe in women. He knows that women make up over half the workforce. He is not a traditionalist. He believes in flexible working hours. He believes that if you want to stay at home, that's fine, but if you want to go to work, that's absolutely fine as well. I think he is probably the most modern leader the Tories have had in 30 years."
Warming to her theme, Gunn dismisses the Lib Dems as being a "busted flush" and is openly hostile to Labour's new leader. "I think life under Gordon Brown is going to be pretty miserable," she says, and, when I ask if Cameron is better for women than Brown, she nods vigorously. "Sans doute," she says, "for women and men."
She is married to Nick Pople, head of an investment fund involved with environmental technology businesses and the couple have a four-year-old son, Jack. Gunn says, strikingly, that she suffers from none of the guilt that consumes many working mothers. "For me - and this is purely for me - I believe I am a better example for my son, as a mother and as a woman who works incredibly hard and wants to be there for him as much as I can. That's my choice."
Indeed, her personal philosophy appears to be perfect for the Cameron-led Tories. She insists that, although she had a private education, she doesn't believe in class. "I was brought up to believe in meritocracy, I wasn't brought up to believe in class," she says. "I was brought up to believe that if you work hard, hopefully you will get to be where you want to be and what you want to be."
Now 38, Gunn grew up in London's Notting Hill and attended Haberdashers' Aske's School for Girls, then boarded at Repton. But she won't be drawn on the current grammar school debate ("I'm not going to comment on that, because it's not my area of expertise"). However, she says she has always been interested in politics, and turned down a place to read law at Cambridge in order to read politics at Bristol.
Her father, John, is one of Britain's leading investors in smaller businesses, but she says her parents were not interested in politics. She notes, though, that her mother's experience of growing up in and leaving communist East Germany was a major influence in her decision to vote Conservative. "My mother escaped from the Berlin wall three days before it was finished, and left her whole family behind. We used to go through Checkpoint Charlie like other people go to Bognor Regis on holiday, and we used to try and help them as much as we could, emotionally and fiscally.
"With what my mother went through, under the thumb of communism, it would have been very strange for me not to have believed in the free market economy and the right of free speech. I always used to call myself a Whig actually. I believed in being strong on law and order without being fascistic, but also liberal on the social agenda, women's rights, that sort of thing."
Gunn made her name in publishing while working at the big literary agency Curtis Brown. She admits that being a Tory in the traditionally left-of-centre publishing world has not always been easy. "You absolutely did not declare your political affiliation," she says of the early days of her career.
When she left Curtis Brown to set up on her own 18 months ago, rumours abounded. Gunn initially insists that it was to "pursue my own opportunities". Later, however, she explains that "one of the major reasons for leaving a big agency which was run by men ... was to get more control over my life. I can take my son to school, and sometimes pick him up, and that makes me happier than anything."
She is also extremely happy to have become involved with the Busoga Trust (busogatrust.co.uk), a charity which seeks to provide clean water in rural Uganda. "What attracted me," she says, "was that in some small way it was helping to empower women in Uganda, whose lives were hitherto spent fetching and carrying water. Women are the mainstay of family society in Uganda, and if, through water, we can help them to help themselves, that has to be good, right?"
Gunn says she "decided what my priorities were in my life a couple of years ago. Trying to get the Tories elected would be one of them, definitely, and trying to get our message across, not just to women, but to everybody. Another would obviously be looking after my son, and also Chelsea winning the league next season. I am driven - yes, very - by the fact that I don't want to fail," she adds. "And also by the fact that I want to provide a good future for Jack."
Gunn is something of a contradiction. She is articulate but appears hesitant; and while she is clearly tough, she appears worried about how she is going to come across during the interview - she has a crib sheet with her, and ponders each answer carefully. Although she has a reputation for negotiating the biggest possible deals for her clients, she is charging the Tories far less than her usual rate. "Sometimes you have to do things because you really believe in them," she says firmly, "not for the money."
Saturday 2 June 2007
It’s only make-believe...
Today I have an article in the Times about the phenomenon that is Rainbow Magic (huge for girls aged between 5-8). The books are "created" by a company which comes up with series to order......Read more here, http://entertainment.timesonline.co.uk/tol/arts_and_entertainment/books/article1869918.ece
or below
It’s only make-believe
Sarah Ebner looks at the bestselling children’s writers who don’t actually exist
YOUNG READERS CAN’T GET enough of Daisy Meadows. Her Rainbow Magic books have sold ten million copies and girls aged between 5 and 8 are enraptured by the tales of Kirsty, Rachel and their fairy friends.
Ms Meadows should be a happy soul. Except that she doesn’t exist.
“It is unusual for children’s books to be written under a pseudonym,” Penny Morris, a director of Orchard, which publishes Rainbow Magic, agrees. “But it needed to happen in this case because there is more than one writer. Ownership remains with Working Partners, not the authors.”
Daisy is actually three people – and most people outside publishing will never have heard of Working Partners, who are responsible for her, and a huge number of other books. As well as Rainbow Magic, their creations include the Animal Ark series (“by” the equally nonexistent Lucy Daniels), the Lady Grace Mysteries and Warriors series. A series for boys aged 7-9 entitled Beast Quest is now in development. The company has deals with almost every big British children’s publisher, and is moving into the adult market (its first novel is out next year).
“I am surprised that they are the only company of their kind in Britain,” Ms Morris says. “But it would be difficult to match them. They now cover all the bases with their ideas.”
The company, set up 12 years ago, aims its books at specific audiences. “We want projects that are going to run for a very long time,” Chris Snowdon, the managing director, says. But he bridles at suggestions that the formula destroys the magic of being a writer. “A lot of people in books try to create a cult of the author, but a lot of demystification can be done.”
All Working Partners’ ideas come from its editorial team – not authors – and are developed in meetings. Once a story has been created, two people build it up, and authors compete to write it. “The storyline can be up to 2,500 words,” Snowdon says. “Rainbow Magicbooks are only 4,500 words long, so that’s a lot of detail. But it can be liberating because the writer is free to focus on the voice.”
Some writers might be aghast at idea, plot and structure being taken away, and Snowdon agrees that it’s a precise way to work. “We tell new writers our rules and that they shouldn’t deviate from the story,” he says. “If they have their own ideas, that’s fine, but they should tell us. Our integrity as a business is the ownership of the idea.”
Narinder Dhami, a children’s writer in her own right, is also one of Working Partners’ most prolific authors. She wrote Ruby the Red Fairy, the first Rainbow Magic adventure. “I prefer coming up with my own ideas,” she says, “but when those aren’t flowing very well, it’s a nice change to have someone send you a synopsis and tell you what to do.”
Many parents and teachers argue that the books are not great literature. Snowdon agrees, but adds: “I don’t know what great literature is, and I’d be interested to ask these people what they think it is. In this country there’s a huge snobbery about books, but we’re creating a reading habit.”
In fact, Working Partners no longer own Rainbow Magic (although they are working on the next two series). Ruby, and her fairy companions grew too big and were sold to HIT Entertainment last month. HIT, whose stable includes Thomas the Tank Engine and Bob the Builder, promises to build the fairies into a “global brand”.
Working Partners will focus on other titles. And while they may have “lost” Daisy Meadows, they haven’t lost the writers behind her. Children might not know their real names, but they’ll soon have more of their stories.
or below
It’s only make-believe
Sarah Ebner looks at the bestselling children’s writers who don’t actually exist
YOUNG READERS CAN’T GET enough of Daisy Meadows. Her Rainbow Magic books have sold ten million copies and girls aged between 5 and 8 are enraptured by the tales of Kirsty, Rachel and their fairy friends.
Ms Meadows should be a happy soul. Except that she doesn’t exist.
“It is unusual for children’s books to be written under a pseudonym,” Penny Morris, a director of Orchard, which publishes Rainbow Magic, agrees. “But it needed to happen in this case because there is more than one writer. Ownership remains with Working Partners, not the authors.”
Daisy is actually three people – and most people outside publishing will never have heard of Working Partners, who are responsible for her, and a huge number of other books. As well as Rainbow Magic, their creations include the Animal Ark series (“by” the equally nonexistent Lucy Daniels), the Lady Grace Mysteries and Warriors series. A series for boys aged 7-9 entitled Beast Quest is now in development. The company has deals with almost every big British children’s publisher, and is moving into the adult market (its first novel is out next year).
“I am surprised that they are the only company of their kind in Britain,” Ms Morris says. “But it would be difficult to match them. They now cover all the bases with their ideas.”
The company, set up 12 years ago, aims its books at specific audiences. “We want projects that are going to run for a very long time,” Chris Snowdon, the managing director, says. But he bridles at suggestions that the formula destroys the magic of being a writer. “A lot of people in books try to create a cult of the author, but a lot of demystification can be done.”
All Working Partners’ ideas come from its editorial team – not authors – and are developed in meetings. Once a story has been created, two people build it up, and authors compete to write it. “The storyline can be up to 2,500 words,” Snowdon says. “Rainbow Magicbooks are only 4,500 words long, so that’s a lot of detail. But it can be liberating because the writer is free to focus on the voice.”
Some writers might be aghast at idea, plot and structure being taken away, and Snowdon agrees that it’s a precise way to work. “We tell new writers our rules and that they shouldn’t deviate from the story,” he says. “If they have their own ideas, that’s fine, but they should tell us. Our integrity as a business is the ownership of the idea.”
Narinder Dhami, a children’s writer in her own right, is also one of Working Partners’ most prolific authors. She wrote Ruby the Red Fairy, the first Rainbow Magic adventure. “I prefer coming up with my own ideas,” she says, “but when those aren’t flowing very well, it’s a nice change to have someone send you a synopsis and tell you what to do.”
Many parents and teachers argue that the books are not great literature. Snowdon agrees, but adds: “I don’t know what great literature is, and I’d be interested to ask these people what they think it is. In this country there’s a huge snobbery about books, but we’re creating a reading habit.”
In fact, Working Partners no longer own Rainbow Magic (although they are working on the next two series). Ruby, and her fairy companions grew too big and were sold to HIT Entertainment last month. HIT, whose stable includes Thomas the Tank Engine and Bob the Builder, promises to build the fairies into a “global brand”.
Working Partners will focus on other titles. And while they may have “lost” Daisy Meadows, they haven’t lost the writers behind her. Children might not know their real names, but they’ll soon have more of their stories.
Friday 1 June 2007
Turning out to be Jewish - what is it like to find out that you're not what you think you were?
Today I have an article in the Jewish Chronicle.
Here it is....
Roderick Young was 23 when he found out that he was Jewish. It completely changed his life.
“I knew I was home”, he says of his first Friday night dinner. “It felt completely comfortable and right. I can’t say more than that. You can’t explain the inexplicable.”
Young, now 47, had no idea of his Jewish roots. He was christened at three weeks old and attended chapel twice a week at his public school. But discovering his Jewishness was a clearly an enriching experience. Eight years ago, he became a rabbi.
Barbara Kessel is the author of Suddenly Jewish, a book which tells the stories of Jews raised as gentiles, who discover their roots. She was prompted to write it by the experience of former US Secretary of State Madeleine Albright, who found out she was Jewish at the age of 59.
“I was so shocked and intrigued,” says Kessel. “I just wondered what it was like to find out that you’re not who you think you are.”
Kessel says that Young’s response, of feeling comfortable or “home”, is common. “It isn’t so much that they found out they were Jewish, but that they had been given an explanation of why they didn’t feel whole,” she says. “Some had even converted to Judaism before finding out.”
Rabbi Young’s Jewishness was hidden away from him on purpose (even his name was his mother’s attempt to situate him firmly in “English” society). His grandmother had been embarrassed by her East-End Jewish roots, and, when her observant husband died, decided to cover them up completely. Young even grew up thinking that his grandmother, Julia Stewart, was descended from King Charles II, Charles Stuart. It was not until he found her wedding certificate that he discovered she was actually named Julia Siegenberg.
“Being Jewish was often seen as something that could hinder your professional advancement, so it would get lost along the way,” says Barbara Kessel. Often it was also seen as dangerous.
That is certainly true of Zoltan Boros’s family, who turned their back on their religion after the horrors of the Second World War. Boros, 30, (who works as a security guard at a Jewish school in London) grew up Christian in a small town in Hungary. He knew little about the Holocaust, and nothing at all about Jews. But after the collapse of Communism, he started to travel, and at the age of 20 went to Israel. “I loved it there,” he says. “I loved the people, the weather, the fact that everyone was smiling, not like at home.”
Keen to stay in the country, Boros asked his mother if there might just be some Jewish connection in the family. This, he thought, could enable him to make aliyah. “My mother told me, over the phone, that when I came home, we would talk,” he says. “I felt there was something she was going to tell me.”
When Boros came home, his mother told him the truth — at least as far as she knew it. “She said that our family was Jewish, that we originally had a different name, and that my great-grandmother, who was no longer alive, had been in Auschwitz. She also said that her mother, my grandma, didn’t like to talk about it, so I should leave her alone.” However, Boros immediately went to his grandmother. “I asked if she could tell me more, but she didn’t want to,” he says. “She was still scared, and said she didn’t want me to be Jewish. She has numbers on her arm, and perhaps they are from Auschwitz. I would like to know more, but she’s the only one who knows.”
Boros’s grandmother told him nothing, instead asking him to do something for her. “She asked me not to do aliyah and I promised her I wouldn’t,” he says. “I love and respect her.
“I don’t feel I am Jewish or Christian. For the last 10 years I’ve been around Jewish people, here and in Israel, so maybe in some way I’m Jewish. But I can’t say I feel it. I know who I am, but if I look back at the past, then I’m not so sure.”
Boros’s experience is not entirely unusual. Some of the people in Suddenly Jewish talk about feeling “nothing”, even though they accept that they are “biologically Jewish”. Many also find it hard to deal with the deception involved.
“It seems so hypocritical that their parents — the people who are supposed to teach you right from wrong — have lied and manipulated reality,” says Barbara Kessel. “Sometimes, it’s the actual revelation that’s extremely painful. One man was training in a Lutheran seminary. The day his mother told him, he was livid. He told her it had ruined his life, and that he never wanted to speak to her again. They have not spoken since.”
When Roderick Young’s elderly aunt told him that she and his mother had been born Jewish, his immediate reaction was anger. “I said I was never going to speak to my mother again and it took me a long time to understand,” he says. “I certainly felt I’d missed out on things, and that I should have been told.”
American journalist Stephen Dubner had been told, but did not understand. The best-selling author (he co-wrote Freakonomics) was the eighth child born to religious Catholic parents. But his parents had not hidden their Jewishness because of fear of persecution. Instead they had both, separately, converted. “I didn’t know what a Jew was when I was growing up,” says Dubner, 43. “Even though I knew on some level that my parents had once been Jewish, I didn’t connect that with me.”
It was not until Dubner moved to New York that he became more interested in Judaism. He was 23 when a friend told him that if his parents were Jewish, then he was too. “When I learned that I was halachically Jewish, that was very jarring to me,” he says. “It made me think, what kind of religion would claim me as a member even though I had never set foot in a synagogue or uttered a word of Hebrew? I didn’t think I was Jewish at all until then — I was a contentedly lapsed Catholic. But the curiosity made me want to be Jewish, and so did the move to New York, where being Jewish is a state of mind.”
Dubner — whose sisters and brothers remain Catholic — has made his Jewishness a major part of his life. His wife is Jewish, and they are bringing up their two children as practising Jews. But his relationship with his mother did suffer — although the pair were reunited before her death in 1999. “She saw my decision as a kind of naïve one, and a rejection of her faith,” he says. “She also saw a problem that when she died and was sent to heaven, it would be a heaven for Catholics, and forbidden for us ever to reunite. As a mother, that was a very painful thought.”
Dubner sat shivah when his mother died, and seems happy with his new faith, but it is Roderick Young — now principal rabbi at Finchley Reform Synagogue in London — whose life has changed beyond recognition. “Ma used to be worried about what I wanted to do with my life and I told her that when it happened, I would know. Well, it happened and I love it. I feel 125 per cent Jewish.”
The first female American Secretary of State, Madeleine Albright, is one of the most high-profile adults to suddenly discover that she was Jewish. Born in Czechoslovakia to a Catholic family, she left as a child in 1939, coming first to Britain and then to the US. As an adult, she became an Episcopalian. However, in 1997, Albright discovered that she had had three Jewish grandparents (they died in Auschwitz). Her parents had converted to Catholicism. “All this was a major surprise for me,” Albright said. “I have said many times my life was a reflection of the turbulence of the 20th century.”
Oscar-nominated film-maker Stephen Frears did not find out he was Jewish until his late twenties — and is not sure why the fact was hidden from him. The director of The Queen has described how he regularly attended Church of England services when he grew up in Leicester. It was not until his grandmother’s 90th birthday party, that his brother divulged the news.
“He said how pleased our grandmother was that I had married a Jewish girl — and that our mother was Jewish. Of course I was surprised that something like this had been concealed for so long.”
Playwright Sir Tom Stoppard, whose original name was Tomas Straussler, always knew there was Jewish blood in his family. But it was not until he was an adult that he discovered both of his parents were Jewish. Sir Tom’s father died when he was still a young child. After his Czech mother remarried the very English Kenneth Stoppard, she was keen to hide her Jewish origins. “It was protection for me, mainly,” Stoppard has said, adding that he does not consider himself Jewish or Christian. However, in an article published in 1999, “On Turning Out To be Jewish” he wrote about his state of mind “now that I’m Jewish”.
Here it is....
Roderick Young was 23 when he found out that he was Jewish. It completely changed his life.
“I knew I was home”, he says of his first Friday night dinner. “It felt completely comfortable and right. I can’t say more than that. You can’t explain the inexplicable.”
Young, now 47, had no idea of his Jewish roots. He was christened at three weeks old and attended chapel twice a week at his public school. But discovering his Jewishness was a clearly an enriching experience. Eight years ago, he became a rabbi.
Barbara Kessel is the author of Suddenly Jewish, a book which tells the stories of Jews raised as gentiles, who discover their roots. She was prompted to write it by the experience of former US Secretary of State Madeleine Albright, who found out she was Jewish at the age of 59.
“I was so shocked and intrigued,” says Kessel. “I just wondered what it was like to find out that you’re not who you think you are.”
Kessel says that Young’s response, of feeling comfortable or “home”, is common. “It isn’t so much that they found out they were Jewish, but that they had been given an explanation of why they didn’t feel whole,” she says. “Some had even converted to Judaism before finding out.”
Rabbi Young’s Jewishness was hidden away from him on purpose (even his name was his mother’s attempt to situate him firmly in “English” society). His grandmother had been embarrassed by her East-End Jewish roots, and, when her observant husband died, decided to cover them up completely. Young even grew up thinking that his grandmother, Julia Stewart, was descended from King Charles II, Charles Stuart. It was not until he found her wedding certificate that he discovered she was actually named Julia Siegenberg.
“Being Jewish was often seen as something that could hinder your professional advancement, so it would get lost along the way,” says Barbara Kessel. Often it was also seen as dangerous.
That is certainly true of Zoltan Boros’s family, who turned their back on their religion after the horrors of the Second World War. Boros, 30, (who works as a security guard at a Jewish school in London) grew up Christian in a small town in Hungary. He knew little about the Holocaust, and nothing at all about Jews. But after the collapse of Communism, he started to travel, and at the age of 20 went to Israel. “I loved it there,” he says. “I loved the people, the weather, the fact that everyone was smiling, not like at home.”
Keen to stay in the country, Boros asked his mother if there might just be some Jewish connection in the family. This, he thought, could enable him to make aliyah. “My mother told me, over the phone, that when I came home, we would talk,” he says. “I felt there was something she was going to tell me.”
When Boros came home, his mother told him the truth — at least as far as she knew it. “She said that our family was Jewish, that we originally had a different name, and that my great-grandmother, who was no longer alive, had been in Auschwitz. She also said that her mother, my grandma, didn’t like to talk about it, so I should leave her alone.” However, Boros immediately went to his grandmother. “I asked if she could tell me more, but she didn’t want to,” he says. “She was still scared, and said she didn’t want me to be Jewish. She has numbers on her arm, and perhaps they are from Auschwitz. I would like to know more, but she’s the only one who knows.”
Boros’s grandmother told him nothing, instead asking him to do something for her. “She asked me not to do aliyah and I promised her I wouldn’t,” he says. “I love and respect her.
“I don’t feel I am Jewish or Christian. For the last 10 years I’ve been around Jewish people, here and in Israel, so maybe in some way I’m Jewish. But I can’t say I feel it. I know who I am, but if I look back at the past, then I’m not so sure.”
Boros’s experience is not entirely unusual. Some of the people in Suddenly Jewish talk about feeling “nothing”, even though they accept that they are “biologically Jewish”. Many also find it hard to deal with the deception involved.
“It seems so hypocritical that their parents — the people who are supposed to teach you right from wrong — have lied and manipulated reality,” says Barbara Kessel. “Sometimes, it’s the actual revelation that’s extremely painful. One man was training in a Lutheran seminary. The day his mother told him, he was livid. He told her it had ruined his life, and that he never wanted to speak to her again. They have not spoken since.”
When Roderick Young’s elderly aunt told him that she and his mother had been born Jewish, his immediate reaction was anger. “I said I was never going to speak to my mother again and it took me a long time to understand,” he says. “I certainly felt I’d missed out on things, and that I should have been told.”
American journalist Stephen Dubner had been told, but did not understand. The best-selling author (he co-wrote Freakonomics) was the eighth child born to religious Catholic parents. But his parents had not hidden their Jewishness because of fear of persecution. Instead they had both, separately, converted. “I didn’t know what a Jew was when I was growing up,” says Dubner, 43. “Even though I knew on some level that my parents had once been Jewish, I didn’t connect that with me.”
It was not until Dubner moved to New York that he became more interested in Judaism. He was 23 when a friend told him that if his parents were Jewish, then he was too. “When I learned that I was halachically Jewish, that was very jarring to me,” he says. “It made me think, what kind of religion would claim me as a member even though I had never set foot in a synagogue or uttered a word of Hebrew? I didn’t think I was Jewish at all until then — I was a contentedly lapsed Catholic. But the curiosity made me want to be Jewish, and so did the move to New York, where being Jewish is a state of mind.”
Dubner — whose sisters and brothers remain Catholic — has made his Jewishness a major part of his life. His wife is Jewish, and they are bringing up their two children as practising Jews. But his relationship with his mother did suffer — although the pair were reunited before her death in 1999. “She saw my decision as a kind of naïve one, and a rejection of her faith,” he says. “She also saw a problem that when she died and was sent to heaven, it would be a heaven for Catholics, and forbidden for us ever to reunite. As a mother, that was a very painful thought.”
Dubner sat shivah when his mother died, and seems happy with his new faith, but it is Roderick Young — now principal rabbi at Finchley Reform Synagogue in London — whose life has changed beyond recognition. “Ma used to be worried about what I wanted to do with my life and I told her that when it happened, I would know. Well, it happened and I love it. I feel 125 per cent Jewish.”
The first female American Secretary of State, Madeleine Albright, is one of the most high-profile adults to suddenly discover that she was Jewish. Born in Czechoslovakia to a Catholic family, she left as a child in 1939, coming first to Britain and then to the US. As an adult, she became an Episcopalian. However, in 1997, Albright discovered that she had had three Jewish grandparents (they died in Auschwitz). Her parents had converted to Catholicism. “All this was a major surprise for me,” Albright said. “I have said many times my life was a reflection of the turbulence of the 20th century.”
Oscar-nominated film-maker Stephen Frears did not find out he was Jewish until his late twenties — and is not sure why the fact was hidden from him. The director of The Queen has described how he regularly attended Church of England services when he grew up in Leicester. It was not until his grandmother’s 90th birthday party, that his brother divulged the news.
“He said how pleased our grandmother was that I had married a Jewish girl — and that our mother was Jewish. Of course I was surprised that something like this had been concealed for so long.”
Playwright Sir Tom Stoppard, whose original name was Tomas Straussler, always knew there was Jewish blood in his family. But it was not until he was an adult that he discovered both of his parents were Jewish. Sir Tom’s father died when he was still a young child. After his Czech mother remarried the very English Kenneth Stoppard, she was keen to hide her Jewish origins. “It was protection for me, mainly,” Stoppard has said, adding that he does not consider himself Jewish or Christian. However, in an article published in 1999, “On Turning Out To be Jewish” he wrote about his state of mind “now that I’m Jewish”.
Tuesday 8 May 2007
The operation that can make breast cancer surgery less painful
Today I have a health piece in the Daily Mail. Here is the link:
http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=453402&in_page_id=1774
It is about a new procedure used to treat women with breast cancer. It's a procedure which is now being used more and more widely - which can only be a good thing.
Here is the piece......
Breast cancer surgery usually involves removing the lump and up to 30 of the lymph nodes under the arm — often causing painful chronic swelling.
With a new technique, only one or two lymph nodes have to be removed — an operation which is set to become more widely available now that 80 per cent of the UK's breast surgeons have signed up for training.
Victoria Yeates, 49, was one of the first to undergo the procedure.
Here, the law lecturer, who lives in Cardiff with her husband Philip, 55, tells SARAH EBNER her story.
The patient
When I discovered a tiny lump in my right breast, I was very blase about it. I'd had another one ten years before which had just disappeared on its own accord.
When I felt the new lump, I thought it would be the same.
It was my sister, who is a pharmacist, who persuaded me to get it investigated. I went to the GP several weeks later and was referred to the University Hospital of Wales.
I was so relaxed about it that when the appointment coincided with a holiday to Egypt, I went to Egypt instead. I feel terrible about that now.
Two weeks later, under the care of Robert Mansel, professor of surgery at the University of Wales College of Medicine in Cardiff, I had a mammogram that came back normal.
I then had an ultrasound scan and was surprised when the radiographer said: "Oh dear, there's definitely abnormal tissue here."
They did a needle biopsy, in which a small piece of suspicious tissue was taken to be sent for analysis, and when I returned to the hospital a week later to find out the results, I knew it was bad news because I was accompanied by one of the breast care nurses.
Still, I felt very calm when they told me the lump was cancerous. My husband Philip, who had come with me, was ashen though. He went through hell.
I was told I had a small tumour which was not aggressive, and that a mastectomy (in which the whole breast is removed) would not be necessary.
They advised a lumpectomy — where only the cancerous tissue and a small area around it are removed — and then radiotherapy (they didn't know yet if I would need chemotherapy).
I came away feeling quite optimistic, but reality dawned over the next week.
I might face a disfiguring procedure and I learned that during the operation they would need to remove all of my lymph nodes in case the cancer had spread.
I was concerned about this and spoke to my breast nurse, who suggested discussing the options with Professor Mansel.
He said that of all tumours, mine was the best type to have — it was slow-growing and small.
He said he was working on a trial involving a technique called sentinel node biopsy, which might reduce the after-effects of having my lymph nodes removed.
The lymph nodes are part of the lymphatic system which draws lymph — fluid — from tissues all over the body back into the bloodstream.
If cancerous cells get into the lymph nodes, it can spread through the body.
Professor Mansel explained that 70 per cent of women with breast cancer have their lymph nodes removed unnecessarily, when they don't have cancer in them, and that lymph node removal can result in a serious complication called lymphoedema — chronic swelling — especially in the arms because lymph is no longer able to drain away.
This feels painful, and it is very hard to move the arm normally.
With sentinel node biopsy, only one or two nodes are removed. If no cancer is found, the rest of the lymph nodes can be retained.
Professor Mansel said the aim of the procedure was to check the first node the cancer would spread to — which is called the sentinel or guard node.
If there is no cancer present, it won't have gone to the other glands, so there is no point taking them out.
It made so much sense, and after meeting Professor Mansel, I went away feeling uplifted but also nervous that I wouldn't be selected for the trial.
I was attending an outpatient appointment in preparation for admission when the nurse told me I'd been selected.
On May 13, 2002, the night before the operation, I was seen by Professor Mansel and his registrar, who explained what would happen during the surgery.
When I was wheeled into theatre, I felt totally calm. The operation lasted two hours, during which time they took out the cancerous lump, removed the lymph nodes and put in a temporary drain.
When I came round, I felt marvellous. There was a tiny scar from where they had taken out the sentinel nodes and a neat line where the lump had been removed.
The side of my breast was a bit caved in because they had to take some tissue out, and I have since had two reconstructive operations.
I had full mobility in my arm afterwards and no swelling.
Ten days later, I went to get my test results and was told that the cancer hadn't gone to the sentinel nodes so I didn't need another operation. It was very good news.
I didn't need chemotherapy, although I did have radiotherapy to make sure no stray cancer cells remained.
I now have a mammogram every year. I consider myself very lucky to have benefited from this medical advance.
The surgeon
Professor Robert Mansel of University Hospital, Cardiff, says:
Sentinel node biopsy allows women who are undergoing breast surgery to have only one or two lymph nodes removed from under their arm, rather than the conventional 20 to 30.
The nodes are then checked in the laboratory for the presence of cancer cells.
If cancer gets into the lymphatic system, there is an increased risk of it spreading to the rest of the body.
Experts had thought that cancer cells spread to all lymph nodes equally — but in fact the cancer moves in a predictable pattern, going from node to node, starting with the sentinel.
If the sentinel node is found to have cancerous cells, then there is a possibility it may have spread to other lymph nodes.
In this case, the patient has to return to theatre for the remaining nodes to be removed.
But if there is no cancer in the sentinel node, then there will be no cancer in the others — and no need for further surgery.
The new technique not only reduces recovery time but also cuts down the number of patients who suffer long-term damage to their arms after the operation.
Removing all of the lymph glands can cause very painful after-effects, such as lymphoedema, where the arm swells up and feels heavy.
This affects around 20 per cent of women having full removal of the nodes and is incurable.
With the new technique, arm swelling is reduced by 80 per cent and numbness and tingling by 80 to 85 per cent.
I'm passionate about this procedure, which is now the standard operation in the U.S. and most of Europe.
I'd like to see it rolled out across the whole of the NHS because it has so many benefits for patients compared to conventional surgery.
When I first met Victoria, I was sure her tumour was non-aggressive and that she would be a good candidate for this operation.
A few hours before her operation, I injected a drop of fluid containing a tiny amount of a radioactive isotope into the skin at the edge of Victoria's areola (the area around the nipple).
The radioactivity travels from the skin to the lymph nodes, reaching the sentinel node first.
During the operation, the radioactivity guides me to this node.
Once in theatre, Victoria was given a general anaesthetic.
We also injected a blue dye under the skin around her breast.
Very occasionally, though not in Victoria's case, the radioactivity doesn't go to the lymph node, so we can then use the dye to guide us instead.
With Victoria asleep, we used the radioactive probe to find the sentinel node.
The probe is like a steel pen, and you point it at the area under the arm.
The nearer the probe gets to the sentinel node, the louder the noise it makes, until it sounds like a scream.
I made a small incision to let the probe in, and moved it around to find the exact position of the nodes.
The radioactivity had gone to five nodes, which I removed, before closing up the wound. (The nodes were sent off for tests — which later came back clear.)
I then made a two-inch incision on the breast to take out the tumour and a margin of tissue.
Once I was satisfied that all cancerous tissue had been removed, I stitched Victoria up.
Victoria recovered remarkably well. She was very positive about the whole thing and was up and about as if nothing had been done.
That's the great thing about this operation. It uses only small incisions and there's very little pain afterwards.
http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=453402&in_page_id=1774
It is about a new procedure used to treat women with breast cancer. It's a procedure which is now being used more and more widely - which can only be a good thing.
Here is the piece......
Breast cancer surgery usually involves removing the lump and up to 30 of the lymph nodes under the arm — often causing painful chronic swelling.
With a new technique, only one or two lymph nodes have to be removed — an operation which is set to become more widely available now that 80 per cent of the UK's breast surgeons have signed up for training.
Victoria Yeates, 49, was one of the first to undergo the procedure.
Here, the law lecturer, who lives in Cardiff with her husband Philip, 55, tells SARAH EBNER her story.
The patient
When I discovered a tiny lump in my right breast, I was very blase about it. I'd had another one ten years before which had just disappeared on its own accord.
When I felt the new lump, I thought it would be the same.
It was my sister, who is a pharmacist, who persuaded me to get it investigated. I went to the GP several weeks later and was referred to the University Hospital of Wales.
I was so relaxed about it that when the appointment coincided with a holiday to Egypt, I went to Egypt instead. I feel terrible about that now.
Two weeks later, under the care of Robert Mansel, professor of surgery at the University of Wales College of Medicine in Cardiff, I had a mammogram that came back normal.
I then had an ultrasound scan and was surprised when the radiographer said: "Oh dear, there's definitely abnormal tissue here."
They did a needle biopsy, in which a small piece of suspicious tissue was taken to be sent for analysis, and when I returned to the hospital a week later to find out the results, I knew it was bad news because I was accompanied by one of the breast care nurses.
Still, I felt very calm when they told me the lump was cancerous. My husband Philip, who had come with me, was ashen though. He went through hell.
I was told I had a small tumour which was not aggressive, and that a mastectomy (in which the whole breast is removed) would not be necessary.
They advised a lumpectomy — where only the cancerous tissue and a small area around it are removed — and then radiotherapy (they didn't know yet if I would need chemotherapy).
I came away feeling quite optimistic, but reality dawned over the next week.
I might face a disfiguring procedure and I learned that during the operation they would need to remove all of my lymph nodes in case the cancer had spread.
I was concerned about this and spoke to my breast nurse, who suggested discussing the options with Professor Mansel.
He said that of all tumours, mine was the best type to have — it was slow-growing and small.
He said he was working on a trial involving a technique called sentinel node biopsy, which might reduce the after-effects of having my lymph nodes removed.
The lymph nodes are part of the lymphatic system which draws lymph — fluid — from tissues all over the body back into the bloodstream.
If cancerous cells get into the lymph nodes, it can spread through the body.
Professor Mansel explained that 70 per cent of women with breast cancer have their lymph nodes removed unnecessarily, when they don't have cancer in them, and that lymph node removal can result in a serious complication called lymphoedema — chronic swelling — especially in the arms because lymph is no longer able to drain away.
This feels painful, and it is very hard to move the arm normally.
With sentinel node biopsy, only one or two nodes are removed. If no cancer is found, the rest of the lymph nodes can be retained.
Professor Mansel said the aim of the procedure was to check the first node the cancer would spread to — which is called the sentinel or guard node.
If there is no cancer present, it won't have gone to the other glands, so there is no point taking them out.
It made so much sense, and after meeting Professor Mansel, I went away feeling uplifted but also nervous that I wouldn't be selected for the trial.
I was attending an outpatient appointment in preparation for admission when the nurse told me I'd been selected.
On May 13, 2002, the night before the operation, I was seen by Professor Mansel and his registrar, who explained what would happen during the surgery.
When I was wheeled into theatre, I felt totally calm. The operation lasted two hours, during which time they took out the cancerous lump, removed the lymph nodes and put in a temporary drain.
When I came round, I felt marvellous. There was a tiny scar from where they had taken out the sentinel nodes and a neat line where the lump had been removed.
The side of my breast was a bit caved in because they had to take some tissue out, and I have since had two reconstructive operations.
I had full mobility in my arm afterwards and no swelling.
Ten days later, I went to get my test results and was told that the cancer hadn't gone to the sentinel nodes so I didn't need another operation. It was very good news.
I didn't need chemotherapy, although I did have radiotherapy to make sure no stray cancer cells remained.
I now have a mammogram every year. I consider myself very lucky to have benefited from this medical advance.
The surgeon
Professor Robert Mansel of University Hospital, Cardiff, says:
Sentinel node biopsy allows women who are undergoing breast surgery to have only one or two lymph nodes removed from under their arm, rather than the conventional 20 to 30.
The nodes are then checked in the laboratory for the presence of cancer cells.
If cancer gets into the lymphatic system, there is an increased risk of it spreading to the rest of the body.
Experts had thought that cancer cells spread to all lymph nodes equally — but in fact the cancer moves in a predictable pattern, going from node to node, starting with the sentinel.
If the sentinel node is found to have cancerous cells, then there is a possibility it may have spread to other lymph nodes.
In this case, the patient has to return to theatre for the remaining nodes to be removed.
But if there is no cancer in the sentinel node, then there will be no cancer in the others — and no need for further surgery.
The new technique not only reduces recovery time but also cuts down the number of patients who suffer long-term damage to their arms after the operation.
Removing all of the lymph glands can cause very painful after-effects, such as lymphoedema, where the arm swells up and feels heavy.
This affects around 20 per cent of women having full removal of the nodes and is incurable.
With the new technique, arm swelling is reduced by 80 per cent and numbness and tingling by 80 to 85 per cent.
I'm passionate about this procedure, which is now the standard operation in the U.S. and most of Europe.
I'd like to see it rolled out across the whole of the NHS because it has so many benefits for patients compared to conventional surgery.
When I first met Victoria, I was sure her tumour was non-aggressive and that she would be a good candidate for this operation.
A few hours before her operation, I injected a drop of fluid containing a tiny amount of a radioactive isotope into the skin at the edge of Victoria's areola (the area around the nipple).
The radioactivity travels from the skin to the lymph nodes, reaching the sentinel node first.
During the operation, the radioactivity guides me to this node.
Once in theatre, Victoria was given a general anaesthetic.
We also injected a blue dye under the skin around her breast.
Very occasionally, though not in Victoria's case, the radioactivity doesn't go to the lymph node, so we can then use the dye to guide us instead.
With Victoria asleep, we used the radioactive probe to find the sentinel node.
The probe is like a steel pen, and you point it at the area under the arm.
The nearer the probe gets to the sentinel node, the louder the noise it makes, until it sounds like a scream.
I made a small incision to let the probe in, and moved it around to find the exact position of the nodes.
The radioactivity had gone to five nodes, which I removed, before closing up the wound. (The nodes were sent off for tests — which later came back clear.)
I then made a two-inch incision on the breast to take out the tumour and a margin of tissue.
Once I was satisfied that all cancerous tissue had been removed, I stitched Victoria up.
Victoria recovered remarkably well. She was very positive about the whole thing and was up and about as if nothing had been done.
That's the great thing about this operation. It uses only small incisions and there's very little pain afterwards.
Friday 13 April 2007
Marathon Task......
The London Marathon is soon to be upon us, so here is an article I wrote for the Daily Express about three people's reasons for running.
WE'RE RUNNING FOR GLORY
3 April 2007
The Daily Express
Thousands will be taking to the streets for the London Marathon later this month.
SARAH EBNER talks to three of the runners
MILLIONS of us will watch in admiration as fun runners and professionals alike pound the London Marathon course on April 22. While we look on from the sidelines or our sofas, 46,000 will be sweating away, determined to finish the 26.2-mile course.
Professional athletes may be desperate to win this prestigious race but thousands of amateurs run for personal pride, in memory of a loved one or to raise funds for good causes.
The London Marathon is the world's largest annual fund raising event. Since 1981, £315 million has been raised, with £41.5 million added last year alone. Here, three runners talk about their reasons for taking part and their hopes of raising money for their chosen charities.
NICKI FORSTER, 33, lives in Cheshunt, Hertfordshire, with her husband Matt, 35, and daughters Beth, seven, and two-year-old Alexa. Nicki recently lost nearly 10 stone. To crown her achievement, she is running her first London Marathon in aid of Children with Leukaemia
"I'VE ALWAYS been in awe of people who did the marathon. I watch it every year and always wanted to take part. I never thought I would actually run it one day. I've always been very overweight. I was a size 18-20 when I met my husband 11 years ago but I just got bigger and bigger until I weighed over 21 stone.
I was morbidly obese but I loved eating.
In everyday life, my weight didn't bother me and I've always been happy and bubbly. But after Alexa was born I began wondering how my girls would cope if I became ill because of my weight. I realised that if I didn't do anything, I might not see my daughters grow up.
I began my diet in January 2006 when I was 20st 6lb. I didn't go to classes because I didn't want other people to look at me but I followed a sensible eating plan and workout DVDs. I lost four stone in four months and thought that if I had the determination to do that, then I could run the marathon. One of the girls in Beth's year at school had been diagnosed with leukaemia, so I decided to run the marathon for Children with Leukaemia.
I now spend an hour or two on the treadmill at the gym twice a week, walk a lot and run two evenings as well. I've got so much more energy and confidence now and feel totally different, fit and happy. I'm a bit nervous about the marathon because I haven't ever done anything like it before but I really want to finish the course. That's my aim and I'm determined to do it."
To make a donation to Children with Leukaemia, visit leukaemia. org or tel: 020 7404 0808.
Nicki's personal fund-raising page can be found at bmycharity. com/ nickiforster
SUSIE HEWER, 49, from East Sussex, will be running in memory of her late mother Peggie Walton and raising money for the Alzheimer's Research Trust. Along with the running, Susie will be "extreme knitting" her way around the course
"I STARTED running five years ago in memory of my friend Caroline, who died of leukaemia, aged 44. I saw an advert for the 5km Race for Life and it seemed like a good memorial. I had never run before. At that time I wasn't working because I had given up my job to look after my mother.
She was suffering from vascular dementia and needed constant care.
My husband Mike said that he would take care of my mum for an hour each day to give me time to run. I started on the treadmill and soon became hooked.
By 2004 my mum was really deteriorating and it was extremely difficult for us to cope. She was incontinent, aggressive and couldn't feed herself any more. She didn't know who we were and needed 24hour care. Also, she wouldn't sleep for more than 30 minutes at a time, which was exhausting. Eventually, after seeing a specialist, she was put in a home. I was racked with guilt but know she would have been horrified by what we went through.
Living with dementia is so awful.
That's why I'm passionate about raising awareness of the disease.
When I saw an advert asking for people to run in the London Marathon for the Alzheimer's Research Trust, I decided to do it for mum. I ran the 2005 London Marathon in four hours 56 minutes. I raised £3,000 and loved it because there was such a tremendous atmosphere. It was also incredibly emotional. Mum died two weeks before the event and it was a real rollercoaster. I was crying and smiling when I crossed the finish line.
I've run other marathons and half marathons since but I'm 50 in June and decided that I should really go for it in 2007. I am doing the Kent 50mile challenge in July but before that I'm running my third London Marathon.
This year I decided I wanted to do something different and I decided to become an "extreme knitter". It was mum who taught me to knit and I love creating something from nothing. It's so relaxing and satisfying.
I run five days a week, for 50 miles in total, and for two hours of that I knit. I'm determined to knit a scarf during the marathon and a number of local knitting groups have promised to hold a Knit Out while I run. They're going to make me a silver blanket for when I finish.
Mike's really proud of me and I'm sure that mum would be, too. This is such an emotional year for me - I actually try not to think about it too much."
The Alzheimer's Research Trust is the UK's leading research charity for dementia. With no Government funding, the trust relies entirely on voluntary donations to fund its work.
Visit alzheimers-research. org. uk
Susie's fund-raising page is at justgiving. com/extremeredhead
DAVID REDGATE, 39, lives with his wife Karen, 35, and daughter Emma, six, in Nottingham. The London Marathon will be his first and he is running in aid of the Children's Liver Disease Foundation (CLDF). Emma was born with liver disease and has had two liver transplants
"EMMA was born on January 18, 2001.
Karen had pre-natal scans but none of them picked up on the catalogue of conditions she was born with. It was all a complete shock.
She was born with oesophageal atresia and a tracheo-oesophageal fistula. Basically, her oesophagus was closed off, which made it impossible for her to swallow. Her oesophagus and windpipe were also joined, which meant that anything she swallowed would enter her lungs.
Midwives and nurses didn't notice the problem for several hours but once they did, Emma was rushed to the operating theatre. She had her first operation at 12 hours old and, luckily, it was successful.
She also had a problem with her liver. The doctors should have picked up on it, not least because she was so jaundiced, but we were assured that there was nothing to worry about. A few weeks later, a health visitor noticed that, as well as the jaundice, Emma's stools were very pale.
She was convinced Emma should have some blood tests and contacted the hospital for us. Emma was diagnosed with biliary atresia, a condition in which inflammation develops within the bile ducts and causes scarring of the liver. It's vital to have a corrective operation, called a Kasai, as soon as possible but Emma's didn't work.
That left us with the horrific prospect that Emma needed a liver transplant. It was a hugely stressful time and I remember wondering if the phone would ever ring with news of a donor. But the first transplant took place in October 2001 and went smoothly. Three days later, Emma was sitting up in bed cuddling a teddy bear.
But liver disease is a life-long condition and we knew that Emma's body would always try to reject her new liver, however long it had been there. It was like living with a timebomb and in November 2003 we were told that Emma would need another transplant. All the fear and horror came back.
Emma had her second transplant in July 2004. Everything settled down reasonably well, and although it hasn't been easy and she will always be on medication, we now live for the day and enjoy Emma as much as we can.
I started running after Emma's first transplant. I was going through a very black time and a friend said that I should run to put me in a positive mood. It worked.
I'm determined to run the marathon and hope to raise a lot of money for the CLDF because we've had so much support from them.
You can't comprehend something like this until you've been through it and we wouldn't have managed so well without the help of the foundation."
The Children's Liver Disease Foundation is the only organisation in the UK dedicated to eradicating childhood liver disease. It can be contacted on 0121 212 3839 or see childliverdisease. org
WE'RE RUNNING FOR GLORY
3 April 2007
The Daily Express
Thousands will be taking to the streets for the London Marathon later this month.
SARAH EBNER talks to three of the runners
MILLIONS of us will watch in admiration as fun runners and professionals alike pound the London Marathon course on April 22. While we look on from the sidelines or our sofas, 46,000 will be sweating away, determined to finish the 26.2-mile course.
Professional athletes may be desperate to win this prestigious race but thousands of amateurs run for personal pride, in memory of a loved one or to raise funds for good causes.
The London Marathon is the world's largest annual fund raising event. Since 1981, £315 million has been raised, with £41.5 million added last year alone. Here, three runners talk about their reasons for taking part and their hopes of raising money for their chosen charities.
NICKI FORSTER, 33, lives in Cheshunt, Hertfordshire, with her husband Matt, 35, and daughters Beth, seven, and two-year-old Alexa. Nicki recently lost nearly 10 stone. To crown her achievement, she is running her first London Marathon in aid of Children with Leukaemia
"I'VE ALWAYS been in awe of people who did the marathon. I watch it every year and always wanted to take part. I never thought I would actually run it one day. I've always been very overweight. I was a size 18-20 when I met my husband 11 years ago but I just got bigger and bigger until I weighed over 21 stone.
I was morbidly obese but I loved eating.
In everyday life, my weight didn't bother me and I've always been happy and bubbly. But after Alexa was born I began wondering how my girls would cope if I became ill because of my weight. I realised that if I didn't do anything, I might not see my daughters grow up.
I began my diet in January 2006 when I was 20st 6lb. I didn't go to classes because I didn't want other people to look at me but I followed a sensible eating plan and workout DVDs. I lost four stone in four months and thought that if I had the determination to do that, then I could run the marathon. One of the girls in Beth's year at school had been diagnosed with leukaemia, so I decided to run the marathon for Children with Leukaemia.
I now spend an hour or two on the treadmill at the gym twice a week, walk a lot and run two evenings as well. I've got so much more energy and confidence now and feel totally different, fit and happy. I'm a bit nervous about the marathon because I haven't ever done anything like it before but I really want to finish the course. That's my aim and I'm determined to do it."
To make a donation to Children with Leukaemia, visit leukaemia. org or tel: 020 7404 0808.
Nicki's personal fund-raising page can be found at bmycharity. com/ nickiforster
SUSIE HEWER, 49, from East Sussex, will be running in memory of her late mother Peggie Walton and raising money for the Alzheimer's Research Trust. Along with the running, Susie will be "extreme knitting" her way around the course
"I STARTED running five years ago in memory of my friend Caroline, who died of leukaemia, aged 44. I saw an advert for the 5km Race for Life and it seemed like a good memorial. I had never run before. At that time I wasn't working because I had given up my job to look after my mother.
She was suffering from vascular dementia and needed constant care.
My husband Mike said that he would take care of my mum for an hour each day to give me time to run. I started on the treadmill and soon became hooked.
By 2004 my mum was really deteriorating and it was extremely difficult for us to cope. She was incontinent, aggressive and couldn't feed herself any more. She didn't know who we were and needed 24hour care. Also, she wouldn't sleep for more than 30 minutes at a time, which was exhausting. Eventually, after seeing a specialist, she was put in a home. I was racked with guilt but know she would have been horrified by what we went through.
Living with dementia is so awful.
That's why I'm passionate about raising awareness of the disease.
When I saw an advert asking for people to run in the London Marathon for the Alzheimer's Research Trust, I decided to do it for mum. I ran the 2005 London Marathon in four hours 56 minutes. I raised £3,000 and loved it because there was such a tremendous atmosphere. It was also incredibly emotional. Mum died two weeks before the event and it was a real rollercoaster. I was crying and smiling when I crossed the finish line.
I've run other marathons and half marathons since but I'm 50 in June and decided that I should really go for it in 2007. I am doing the Kent 50mile challenge in July but before that I'm running my third London Marathon.
This year I decided I wanted to do something different and I decided to become an "extreme knitter". It was mum who taught me to knit and I love creating something from nothing. It's so relaxing and satisfying.
I run five days a week, for 50 miles in total, and for two hours of that I knit. I'm determined to knit a scarf during the marathon and a number of local knitting groups have promised to hold a Knit Out while I run. They're going to make me a silver blanket for when I finish.
Mike's really proud of me and I'm sure that mum would be, too. This is such an emotional year for me - I actually try not to think about it too much."
The Alzheimer's Research Trust is the UK's leading research charity for dementia. With no Government funding, the trust relies entirely on voluntary donations to fund its work.
Visit alzheimers-research. org. uk
Susie's fund-raising page is at justgiving. com/extremeredhead
DAVID REDGATE, 39, lives with his wife Karen, 35, and daughter Emma, six, in Nottingham. The London Marathon will be his first and he is running in aid of the Children's Liver Disease Foundation (CLDF). Emma was born with liver disease and has had two liver transplants
"EMMA was born on January 18, 2001.
Karen had pre-natal scans but none of them picked up on the catalogue of conditions she was born with. It was all a complete shock.
She was born with oesophageal atresia and a tracheo-oesophageal fistula. Basically, her oesophagus was closed off, which made it impossible for her to swallow. Her oesophagus and windpipe were also joined, which meant that anything she swallowed would enter her lungs.
Midwives and nurses didn't notice the problem for several hours but once they did, Emma was rushed to the operating theatre. She had her first operation at 12 hours old and, luckily, it was successful.
She also had a problem with her liver. The doctors should have picked up on it, not least because she was so jaundiced, but we were assured that there was nothing to worry about. A few weeks later, a health visitor noticed that, as well as the jaundice, Emma's stools were very pale.
She was convinced Emma should have some blood tests and contacted the hospital for us. Emma was diagnosed with biliary atresia, a condition in which inflammation develops within the bile ducts and causes scarring of the liver. It's vital to have a corrective operation, called a Kasai, as soon as possible but Emma's didn't work.
That left us with the horrific prospect that Emma needed a liver transplant. It was a hugely stressful time and I remember wondering if the phone would ever ring with news of a donor. But the first transplant took place in October 2001 and went smoothly. Three days later, Emma was sitting up in bed cuddling a teddy bear.
But liver disease is a life-long condition and we knew that Emma's body would always try to reject her new liver, however long it had been there. It was like living with a timebomb and in November 2003 we were told that Emma would need another transplant. All the fear and horror came back.
Emma had her second transplant in July 2004. Everything settled down reasonably well, and although it hasn't been easy and she will always be on medication, we now live for the day and enjoy Emma as much as we can.
I started running after Emma's first transplant. I was going through a very black time and a friend said that I should run to put me in a positive mood. It worked.
I'm determined to run the marathon and hope to raise a lot of money for the CLDF because we've had so much support from them.
You can't comprehend something like this until you've been through it and we wouldn't have managed so well without the help of the foundation."
The Children's Liver Disease Foundation is the only organisation in the UK dedicated to eradicating childhood liver disease. It can be contacted on 0121 212 3839 or see childliverdisease. org
Monday 12 March 2007
You've bought the Princesses - now fork out for the Fairies
Today I have a small piece in the Guardian about Disney fairies - the new phenomenon which is aimed at those young girls who are growing out of Disney princesses. Disney, it appears, is aiming to capture the imagination of little girls from toddlerdom to teenagerdom!
Here is the link to the Guardian piece, http://www.guardian.co.uk/g2/story/0,,2031641,00.html
Or you can read my original piece here:
By Sarah Ebner
Once upon a time there was a Scot called Andy Mooney. He travelled to faraway Hollywood and changed the lives of millions of young girls. For it was Mooney who begat the Disney Princess phenomenon – proving that an apparently simple idea can be among the most successful.
Mooney decided to join together all the Disney Princesses – adding in a few other heroines, such as Mulan and Pocahontas, whose link to royalty was somewhat tenuous. Little girls across the world were enraptured, and sales of Disney merchandise, from vests to bicycles, rose from $300m in 2001 to $3.4bn last year.
The genius – and I say this as the mother of a five-year-old who has a poster of Belle (from Beauty and the Beast) on her wall, and Cinderella and Sleeping Beauty dresses in her wardrobe - was that this all happened without having to invent any new characters, and with no initial fanfare or advertising.
It sounds like a happy ending, but Disney and Mooney are not resting on their laurels. Instead, having captured two to five year olds, they’ve now got five to eights in their sights. Disney Fairies are set to be the next big thing, and if the website, http://disney.go.com/fairies/, is anything to go by, Tinker Bell and her new friends look like a flying version of the Spice Girls.
“Tinker Bell is perennially popular for us,” explains Kirsten De Groot, European Director of Disney Princess and Girls franchises. “She’s a very vivacious, fun character, and her world of fairies resonates with older girls.”
The American website has already had nearly 17 million hits in just one month, and a British version launches in the summer. A Tinker Bell film (which finally gives the little fairy a voice, courtesy of Brittany Murphy) will be released onto DVD next year while a new Disney Fairies magazine is already proving popular. There is also soon to be an onslaught of books, costumes and other fairy merchandise.
So how do the fairies compare to the princesses? Well, there’s a distinct lack of ballgowns and no princes in sight. The fairies will be able to mix with each other (unlike the princesses, who are all limited to their original settings) and there’s also been an obvious attempt to make them ethnically diverse, although beauty is still as much of a requirement as ever. Tinker Bell, who looks as if she’s had a 21st century makeover, is the only blonde, while Silvermist even looks a little like one of the Bratz – although that’s clearly a heretical thing to suggest to anyone at Disney, and De Groot, naturally, disagrees.
“Do you wish you were a fairy?” asks the new website, and a whopping 87 per cent of girls say they do (as opposed to the 13 per cent “happy being me.”). Disney will be thrilled. But when your daughters no longer believe in fairies, the corporation will still be there. High School Musical – the Disney TV movie which has captured the imaginations of 8 to 12 year olds across the world – is ready and waiting.
Here is the link to the Guardian piece, http://www.guardian.co.uk/g2/story/0,,2031641,00.html
Or you can read my original piece here:
By Sarah Ebner
Once upon a time there was a Scot called Andy Mooney. He travelled to faraway Hollywood and changed the lives of millions of young girls. For it was Mooney who begat the Disney Princess phenomenon – proving that an apparently simple idea can be among the most successful.
Mooney decided to join together all the Disney Princesses – adding in a few other heroines, such as Mulan and Pocahontas, whose link to royalty was somewhat tenuous. Little girls across the world were enraptured, and sales of Disney merchandise, from vests to bicycles, rose from $300m in 2001 to $3.4bn last year.
The genius – and I say this as the mother of a five-year-old who has a poster of Belle (from Beauty and the Beast) on her wall, and Cinderella and Sleeping Beauty dresses in her wardrobe - was that this all happened without having to invent any new characters, and with no initial fanfare or advertising.
It sounds like a happy ending, but Disney and Mooney are not resting on their laurels. Instead, having captured two to five year olds, they’ve now got five to eights in their sights. Disney Fairies are set to be the next big thing, and if the website, http://disney.go.com/fairies/, is anything to go by, Tinker Bell and her new friends look like a flying version of the Spice Girls.
“Tinker Bell is perennially popular for us,” explains Kirsten De Groot, European Director of Disney Princess and Girls franchises. “She’s a very vivacious, fun character, and her world of fairies resonates with older girls.”
The American website has already had nearly 17 million hits in just one month, and a British version launches in the summer. A Tinker Bell film (which finally gives the little fairy a voice, courtesy of Brittany Murphy) will be released onto DVD next year while a new Disney Fairies magazine is already proving popular. There is also soon to be an onslaught of books, costumes and other fairy merchandise.
So how do the fairies compare to the princesses? Well, there’s a distinct lack of ballgowns and no princes in sight. The fairies will be able to mix with each other (unlike the princesses, who are all limited to their original settings) and there’s also been an obvious attempt to make them ethnically diverse, although beauty is still as much of a requirement as ever. Tinker Bell, who looks as if she’s had a 21st century makeover, is the only blonde, while Silvermist even looks a little like one of the Bratz – although that’s clearly a heretical thing to suggest to anyone at Disney, and De Groot, naturally, disagrees.
“Do you wish you were a fairy?” asks the new website, and a whopping 87 per cent of girls say they do (as opposed to the 13 per cent “happy being me.”). Disney will be thrilled. But when your daughters no longer believe in fairies, the corporation will still be there. High School Musical – the Disney TV movie which has captured the imaginations of 8 to 12 year olds across the world – is ready and waiting.
Tuesday 6 March 2007
The Tragedy Of Alzheimer's
As many of you will, unfortunately, know, Alzheimer's is a dreadful disease, which robs sufferers of their memory and eventually strips them of their dignity.
Today I have a small interview in the Daily Mail. It is with a wonderful woman called Mary Stevenson whose husband, John, was diagnosed with Alzheimer's when he was only 53. Mary is a strong, intelligent woman whose life has been changed irrevocably by the disease John is suffering from. Obviously John's life has been changed too. As Mary says, he is no longer the intelligent, witty businessman that he once was.
Please read my piece in the Mail, although you'll have to be quick because it doesn't appear to be online!
However, if you are interested in some of the other current issues around Alzheimer's, take a look at my very long article below. It tells you more about Mary and John, but is written mainly because of the recent decision by the National Institute of Clinical Excellence to restrict the drugs that help Alzheimer's sufferers.
Mary Stevenson is angry. She cannot believe a drug that has helped her beloved husband John so much will now be denied to people just like him, who suffer from Alzheimer's.
“I hate to think what life would have been like if he hadn’t been on Aricept,” says Mary. “I don’t think I could have coped. To withdraw these drugs is absolutely stupid and awful, and I’m sure it’s only because it’s the older generation who get the disease. The drugs only cost £2.50 a day. Aren’t people like John worth that?”
Aricept is one of three medications known as acetylcholinesterase inhibitors that are used to treat the symptoms of Alzheimer’s disease – a physical disease that affects the brain. It is progressive, and has no cure – cells die off over time, and the brain becomes increasingly damaged. No one is quite sure why it happens, but the greatest risk factor is age (one in five 80-year-olds will be affected by the disease). Around 400,000 people in the UK are currently affected, but this is set to increase rapidly in the future as the population ages.
The illness begins gradually. Sufferers may notice problems with their short-term memory, for example, and then as the disease progresses, usually over a period of years, become prey to more marked changes. They may forget names and faces and need help to eat, dress and wash. In the final stages, sufferers need to be looked after 24 hours a day, often away from the loved ones they can no longer remember - and in hospital or care homes. Alzheimer’s starts by stripping people of their memory, but goes onto strip them of their dignity.
John was prescribed the drug seven years ago, around nine months after being diagnosed. The diagnosis came as a dreadful shock. “Nobody knows what they're going to have to face in life, but it was devastating to be told this when John was only 53,” says Mary, 63. “What we could cling to, however, was the fact that there was something that could help him and stop him deteriorating so quickly. Everybody knows there isn’t a cure for Alzheimer’s, but you can still have a quality of life. Aricept has given us so much more time together.
“Over the past seven years, John has given away three of his daughters at their weddings, and made speeches at them too. Before he took the drug, he was so confused that he couldn’t remember his figures, and had no idea about the difference between a 10p piece and a £10 note. He was still working as a chartered surveyor, but unpaid bills were mounting up. He would look at cheque books and not know what to do with them, or put a CD rom in the wrong place on the computer. He'd forget names, or say the wrong thing in meetings. His mind couldn't explain what he wanted to say; he was losing it. He'd think Tuesday was Thursday, or Wednesday was Friday, repeat what you said, and get his facts confused.
"We didn't tell the children what was wrong until we had the diagnosis, but they told me afterwards that they thought he had a brain tumour because he was acting so strangely.
"Aricept enabled things to return almost to normal for a while, although he still wasn't brilliant with figures, so I took over the bills. He was able to keep working for another 18 months and, since then he's seen our youngest daughter, Rebecca, through sixth form and university, and gained so much pleasure from our three young grandchildren. I honestly don't think we'd have had that much time together without the drug.
“When we were first told that John might have Alzheimer's, I found out more about it and couldn’t believe it. The more I looked into it, the worse it seemed. It's the kind of thing you just can't imagine happening to you, and John and I discussed it - we could talk about things then. I remember, he said 'I promise you, I won't let it get that bad,' and I said 'but you don't have control over it.'
“Without Aricept, I think John would have slowed down so quickly, although nobody can say for certain how bad he would have been without the drug. It made an immediate difference when he started taking it, and I am convinced it has held off the disease more recently. I think it has meant he has deteriorated more slowly.
“John was a clever, witty, intelligent business man, but last week we were told that he is now in the moderate to severe moderate stages of the disease, and getting worse. Being told that was very emotional, and I admit that I have cried a lot. Life is very stressful, and without the tremendous support from our family, I would have gone under ages ago. But the children live all over the country, and I've got no back-up here, where we live, in a small village in the Lake District.
"John can no longer write now – his brain can’t tell his hand what to do – and he’s finding it hard to read too. He can’t make himself a cup of tea, and on a bad day he can be very uncooperative - for example, he will let me put shampoo in his hair to wash it, but he won't then let me wash it out again. He also fidgets a lot, folds things up, or cuts bits out of the newspaper, so that when I go in the room, there are pieces of paper all over the floor.
“Still, we’re trying to make the most of the time we’ve got. I still love John, no matter what, but it’s different - he’s not the same person. He was always so dynamic, but now it's like role reversal. I have to make all the decisions, from what to we do each day to what we eat. He was so go-ahead, and now he's closing down. But sometimes, his wit comes back, and he makes a great, dry comment.
“I do get very weepy, although I don't think you can wallow in self-pity. But I do wonder what the future holds for me, and think that it's not a lot. When we met we already both had children, and then had Rebecca together, so we never really had time for just the two of us. The children are wonderful, so we don't regret that at all, but because of the Alzheimer's we now don't have time together when we thought we would - once the children left home. Still, we try to keep busy. If I couldn't get out and do things, life would be unbearable. We have lots of friends in the village, belong to the Rotary Club, and I belong to the WI as well. But it's still lonely. My best friend is gone, and he's not coming back. Yet I’m sure he would have reached this stage far sooner without Aricept.”
John is one of the lucky ones. Last November, it was announced that people like him will now no longer be prescribed drugs like Aricept – and so gain valuable time with their loved ones - when they are first diagnosed. The National Institute for Health and Clinical Excellence (NICE), which was set up to advise the NHS on how to best spend its money on drugs, ruled that treatment with the three acetylcholinesterase inhibitors, donepezil (Aricept), galantamine (Reminyl) and rivastigmine (Exelon) should be restricted to people in the 'moderate' stages (as opposed to the earlier, 'mild' stages or the later 'severe' stages) of the disease, and stopped when patients enter the later phase. In addition, it ruled that memantine (Ebixa), which is the only drug treatment licensed to deal with behavioural symptoms in the severe stage of the disease, could no longer be prescribed at all – unless it was for a clinical trial. This has also been greeted with dismay, as Ebixa can reduce symptoms such as aggression and agitation in Alzheimer's sufferers. The only alternative way to treat these symptoms is with antipsychotic sedatives called neuroleptics which are not recommended for people with dementia.
Now the Alzheimer’s Society has said that it is going to go to the High Court to force NICE to explain how the decision to restrict the Alzheimer's drugs was reached – and to make them reverse it. It’s the first time that NICE has been challenged in this way.
The companies that make the Alzheimer’s drugs are also involved. But Neil Hunt, chief executive of the Alzheimer’s Society, says their challenge has a different motive.
“It makes sense for us to be part of the same judicial review, but we are completely on our own,” he says. “We’re not interested in who's making money, we’re interested in whether these drugs are available or not. We think they should be.”
The NICE ruling – which allows those already on the drugs to keep getting them - did not surprise many experts, as it upheld an earlier decision announced in March 2005. The drugs appear to be relatively cheap, but the Alzheimer’s Society and others are convinced that the decision was taken on cost grounds alone as NICE did conclude that the drugs were clinically effective. NICE rejected appeals from patient, carer and professional
groups, as well as the drug manufacturers, and says that for many patients there is "no benefit" from taking the drugs, and that it doesn't want to give them or their carers "false hope."
"We have a responsibility to help the NHS spend its money wisely," said a spokeswoman. "It is far better to treat patients for whom the drugs have the greatest benefit, and evidence has shown that these are patients with moderate Alzheimer's disease."
Roy Jones, director of the Research Institute for the Care of the Elderly in Bath, and a professor of gerontology, the study of ageing, was one of those who gave evidence to the appeals committee. He can’t understand how it upheld the earlier verdict.
“We are now being told to diagnose people with mild Alzheimer’s but then tell them that we can’t give them drugs - so they should come back when they’ve deteriorated, then we can try to improve their symptoms again.
“This is a very unusual concept. No one says to someone with mild diabetes,
we’ll treat you when you’re worse. It puts doctors into difficulties to have
to say this to patients. It’s a real ethical dilemma.”
Professor Jones is curious about the model that NICE used to determine the cost effectiveness of the drug in the different stages of the disease (this will also be one of the drug manufacturers’ main bones of contention in the judicial review). The decision was dependent on a complicated model that uses a measurement called a “quality adjusted life year”, but Alzheimer's experts say that it isn't clear exactly how this has all been worked out.
Professor Jones is particularly concerned that the calculations don’t fully take account of how the drugs may enable patients to be looked after at home, rather than in expensive care, for much longer. Nor does he think the organisation properly considered the positive effects the drugs have on carers. “Carers who are stressed use their own doctors more for problems such as anxiety and depression caused by dealing with the day to say difficulties of looking after someone with the disease," he says. “That’s part of the overall cost of Alzheimer’s to society.
"The evidence that these drugs work in mild Alzheimer’s is undoubted and NICE accepts that, but they used a particular model to work out cost-efficiency, and our advice was ignored. It looks as if we are going back to the situation we used to have – when getting the drugs you need depends on whether you can afford it.”
According to the Alzheimer's Society, the benefits of the drug treatments for people with Alzheimer's disease in both the mild and moderate stages are evident from the results of more than 30 placebo controlled trials which were evaluated as part of the Cochrane Collaboration, the leading body for undertaking systematic reviews of treatments. The research also suggested that people who began drug treatment at a later stage never caught up with those who began earlier. This implies that earlier treatment leads to an improved long-term prognosis.
Dr David Wilkinson, a psychiatrist and founder of the Memory Assessment and Research Centre, at Moorgreen Hospital in Southampton, agrees.
“Everybody involved in the use of these drugs knows they work,” he says. “I gave evidence to the committee on this, but they didn’t want to hear it. Yet the data from analyses of clinical trials shows that the key to getting the most benefits from these drugs is to start patients off on them early, and for them to be used continuously.”
“I’ve been working in this field for 25 years,” says Dr Wilkinson, who describes the NICE decision as a “betrayal” of patients and their families, and considers it “ageist”. “Treatments have got so much better – we simply don’t see the decline we used to, as the drugs change the course of the disease, slowing its progression down. But what we’re doing now is turning the clock back. The decision on Memantine means doctors can only
give people tranquilisers to calm them down in the later stages, when they get agitated, while the ruling on the other drugs suggests that if we diagnose patients early, we then do nothing to help. That’s wrong. We’ve got an ageing population, and it’s absolutely crucial that we make sure people remain independent for longer.”
Dr Wilkinson says that one of the main problems with the decision is its rigidity about determining who is or isn’t eligible for the drugs. The NICE ruling relies heavily on a patient's mini mental state examination (MMSE) score. This examination - a series of questions and tests covering topics such as memory, language, writing and orientation – was originally designed as a screening tool for dementia. It does not enable doctors to diagnose or rule out the disease, but to enables them to decide whom they should further investigate. However, NICE uses it to measure how severe the disease is, stating that only people with a score of between 10 and 20 (out of 30) will have access to the main three drugs. However, patients with a MMSE of 20 may already be having major difficulties with memory and managing everyday activities.
There is no common sense here, and it is not good medicine to take decisions which aren't on an individual basis,” says Dr Wilkinson. “We know that these drugs work in ways that this test can’t measure - on behaviour, mood and sleep - and we have data that was not available in the early trials, but has been clearly seen in more recent studies, which shows that these important aspects of the disease treatment were ignored."
Experts also argue that there are other problems with using the MMSE test so strictly. Scores can differ from day to day. For example, those with a high level of education may score highly, even if they are in the moderate rather than mild stage of the disease.
“For years, people have tried to practise for these tests to achieve the best score they can and reassure themselves that they are not deteriorating,” says Hunt. “In the future, perhaps they will deliberately try to forget things, so that they can get the drugs.”
There is ongoing research into the field of drug treatments, vaccines and blood tests to diagnose Alzheimer’s disease. However, at present, the four drugs subject to the NICE ruling are the only treatments available – around 60,000 people are currently taking them.
Research has shown that there is not enough of a chemical called acetylcholine – used for memory and communication - being produced in the brains of people with Alzheimer's disease. Acetylcholine is broken down by an enzyme called acetylcholinesterase, and this damages communication between cells. Three of the drugs, the acetylcholinesterase inhibitors Aricept, Reminyl and Exelon, work in similar ways to prevent this enzyme from breaking down the acetylcholine in the brain, while Ebixa works by blocking a messenger chemical that damages brain cells, known as a neurotransmitter glutamate.
“The drugs are very effective,” says Dr Wilkinson. “I would probably resign first before telling a patient that they had Alzheimer’s but couldn’t have these drugs.”
The guidelines issued by NICE are not mandatory, but if local primary care trusts - which take control of local health care - do follow them, no budget will be provided for doctors to prescribe these drugs as they wish. “We’re told that clinical judgment is up to the doctor, but if we decide to prescribe them, then we’ll be overspending and something else will be taken away from our budgets,” says Dr Wilkinson.
Back in 2001 NICE recommended that the three drugs (Ebixa wasn’t then licensed) for treating Alzheimer’s disease should be made available on the NHS. The Health Minister at the time, John Hutton, said the announcement represented “a step forward in the treatment of Alzheimer’s disease” and that it would make a “real difference to the lives of tens of thousands of people". With the more recent costing appraisal that, of course, has
changed. NICE has also since claimed that the drugs are not effective for everyone.
“It’s true that not everybody benefits from the drugs, but that’s not an acceptable reason for denying them to people for whom they do make a big difference,” says Mr Hunt. “Our research, which NICE accepts, suggests that around 50 per cent of people benefit, while those who don’t simply stop taking them.
“The question is how to make sure people are not unnecessarily prescribed them, rather than to prevent everybody in the mild or severe stages of the disease from getting them.”
Andrew Dillon, NICE's chief executive, has said that he is “disappointed” to hear of the judicial review proceedings, and that any court action would “divert energy and funding” from NICE’s work.
“Health service funding is limited, and it is our job to assess the clinical and cost-effectiveness of both drug and non-drug interventions to ensure the money spent by the NHS is well spent.
“Our consultation, decision-making and appeals processes are transparent and fair. We share our methodology and enable our stakeholders to see the basis on which our experts arrive at their decisions. We invite patients, medical professionals and anyone who has an interest to express their views and comment on our proposals.”
“I’d be interested to know what someone on the committee would do if a member of their family got mild Alzheimer’s,' says Prof Jones. If it was someone in my family, I wouldn’t want to wait until they got worse before they received the drugs.”
Mary says she’s sure that without Aricept, John’s care would be costing a lot more, while the couple’s quality of life would be far poorer.
“Although John is now worse than he was, and deteriorating all the time, I still believe the drugs are holding the disease back,” she says. “If he hadn’t taken them, he’d have deteriorated so quickly and he might be in a care home now.
”I was 33 when my first husband, David Legge, died of cancer, leaving me with two young daughters. That was in 1977, but back then, David, who was also 33, was given
every drug he needed. Now we’re in 2007, and if John was to be diagnosed now, instead of seven years ago, he wouldn’t be able to get the drugs he needs. That’s age discrimination, and also discrimination against Alzheimer's as a disease, because drugs are available for other illnesses. I can’t believe it’s happening today.”
Meanwhile, John says that people must have access to the drugs. “I’m a person who never wants to give up and I do want to keep going,” he says, “It’s the Aricept that has allowed me to do that. If I didn’t have it, I’d be lost.”
To donate to the Alzheimer's Society appeal, log onto: www.alzheimers.org.uk/emergencyappeal or ring the donation hotline on 0845
306 0898
John and Mary Stevenson's daughter, Rebecca, is running the NY Marathon in aid of the Alzheimer's Society. Please sponsor her at http://www.justgiving.com/rstevenson .
Today I have a small interview in the Daily Mail. It is with a wonderful woman called Mary Stevenson whose husband, John, was diagnosed with Alzheimer's when he was only 53. Mary is a strong, intelligent woman whose life has been changed irrevocably by the disease John is suffering from. Obviously John's life has been changed too. As Mary says, he is no longer the intelligent, witty businessman that he once was.
Please read my piece in the Mail, although you'll have to be quick because it doesn't appear to be online!
However, if you are interested in some of the other current issues around Alzheimer's, take a look at my very long article below. It tells you more about Mary and John, but is written mainly because of the recent decision by the National Institute of Clinical Excellence to restrict the drugs that help Alzheimer's sufferers.
Mary Stevenson is angry. She cannot believe a drug that has helped her beloved husband John so much will now be denied to people just like him, who suffer from Alzheimer's.
“I hate to think what life would have been like if he hadn’t been on Aricept,” says Mary. “I don’t think I could have coped. To withdraw these drugs is absolutely stupid and awful, and I’m sure it’s only because it’s the older generation who get the disease. The drugs only cost £2.50 a day. Aren’t people like John worth that?”
Aricept is one of three medications known as acetylcholinesterase inhibitors that are used to treat the symptoms of Alzheimer’s disease – a physical disease that affects the brain. It is progressive, and has no cure – cells die off over time, and the brain becomes increasingly damaged. No one is quite sure why it happens, but the greatest risk factor is age (one in five 80-year-olds will be affected by the disease). Around 400,000 people in the UK are currently affected, but this is set to increase rapidly in the future as the population ages.
The illness begins gradually. Sufferers may notice problems with their short-term memory, for example, and then as the disease progresses, usually over a period of years, become prey to more marked changes. They may forget names and faces and need help to eat, dress and wash. In the final stages, sufferers need to be looked after 24 hours a day, often away from the loved ones they can no longer remember - and in hospital or care homes. Alzheimer’s starts by stripping people of their memory, but goes onto strip them of their dignity.
John was prescribed the drug seven years ago, around nine months after being diagnosed. The diagnosis came as a dreadful shock. “Nobody knows what they're going to have to face in life, but it was devastating to be told this when John was only 53,” says Mary, 63. “What we could cling to, however, was the fact that there was something that could help him and stop him deteriorating so quickly. Everybody knows there isn’t a cure for Alzheimer’s, but you can still have a quality of life. Aricept has given us so much more time together.
“Over the past seven years, John has given away three of his daughters at their weddings, and made speeches at them too. Before he took the drug, he was so confused that he couldn’t remember his figures, and had no idea about the difference between a 10p piece and a £10 note. He was still working as a chartered surveyor, but unpaid bills were mounting up. He would look at cheque books and not know what to do with them, or put a CD rom in the wrong place on the computer. He'd forget names, or say the wrong thing in meetings. His mind couldn't explain what he wanted to say; he was losing it. He'd think Tuesday was Thursday, or Wednesday was Friday, repeat what you said, and get his facts confused.
"We didn't tell the children what was wrong until we had the diagnosis, but they told me afterwards that they thought he had a brain tumour because he was acting so strangely.
"Aricept enabled things to return almost to normal for a while, although he still wasn't brilliant with figures, so I took over the bills. He was able to keep working for another 18 months and, since then he's seen our youngest daughter, Rebecca, through sixth form and university, and gained so much pleasure from our three young grandchildren. I honestly don't think we'd have had that much time together without the drug.
“When we were first told that John might have Alzheimer's, I found out more about it and couldn’t believe it. The more I looked into it, the worse it seemed. It's the kind of thing you just can't imagine happening to you, and John and I discussed it - we could talk about things then. I remember, he said 'I promise you, I won't let it get that bad,' and I said 'but you don't have control over it.'
“Without Aricept, I think John would have slowed down so quickly, although nobody can say for certain how bad he would have been without the drug. It made an immediate difference when he started taking it, and I am convinced it has held off the disease more recently. I think it has meant he has deteriorated more slowly.
“John was a clever, witty, intelligent business man, but last week we were told that he is now in the moderate to severe moderate stages of the disease, and getting worse. Being told that was very emotional, and I admit that I have cried a lot. Life is very stressful, and without the tremendous support from our family, I would have gone under ages ago. But the children live all over the country, and I've got no back-up here, where we live, in a small village in the Lake District.
"John can no longer write now – his brain can’t tell his hand what to do – and he’s finding it hard to read too. He can’t make himself a cup of tea, and on a bad day he can be very uncooperative - for example, he will let me put shampoo in his hair to wash it, but he won't then let me wash it out again. He also fidgets a lot, folds things up, or cuts bits out of the newspaper, so that when I go in the room, there are pieces of paper all over the floor.
“Still, we’re trying to make the most of the time we’ve got. I still love John, no matter what, but it’s different - he’s not the same person. He was always so dynamic, but now it's like role reversal. I have to make all the decisions, from what to we do each day to what we eat. He was so go-ahead, and now he's closing down. But sometimes, his wit comes back, and he makes a great, dry comment.
“I do get very weepy, although I don't think you can wallow in self-pity. But I do wonder what the future holds for me, and think that it's not a lot. When we met we already both had children, and then had Rebecca together, so we never really had time for just the two of us. The children are wonderful, so we don't regret that at all, but because of the Alzheimer's we now don't have time together when we thought we would - once the children left home. Still, we try to keep busy. If I couldn't get out and do things, life would be unbearable. We have lots of friends in the village, belong to the Rotary Club, and I belong to the WI as well. But it's still lonely. My best friend is gone, and he's not coming back. Yet I’m sure he would have reached this stage far sooner without Aricept.”
John is one of the lucky ones. Last November, it was announced that people like him will now no longer be prescribed drugs like Aricept – and so gain valuable time with their loved ones - when they are first diagnosed. The National Institute for Health and Clinical Excellence (NICE), which was set up to advise the NHS on how to best spend its money on drugs, ruled that treatment with the three acetylcholinesterase inhibitors, donepezil (Aricept), galantamine (Reminyl) and rivastigmine (Exelon) should be restricted to people in the 'moderate' stages (as opposed to the earlier, 'mild' stages or the later 'severe' stages) of the disease, and stopped when patients enter the later phase. In addition, it ruled that memantine (Ebixa), which is the only drug treatment licensed to deal with behavioural symptoms in the severe stage of the disease, could no longer be prescribed at all – unless it was for a clinical trial. This has also been greeted with dismay, as Ebixa can reduce symptoms such as aggression and agitation in Alzheimer's sufferers. The only alternative way to treat these symptoms is with antipsychotic sedatives called neuroleptics which are not recommended for people with dementia.
Now the Alzheimer’s Society has said that it is going to go to the High Court to force NICE to explain how the decision to restrict the Alzheimer's drugs was reached – and to make them reverse it. It’s the first time that NICE has been challenged in this way.
The companies that make the Alzheimer’s drugs are also involved. But Neil Hunt, chief executive of the Alzheimer’s Society, says their challenge has a different motive.
“It makes sense for us to be part of the same judicial review, but we are completely on our own,” he says. “We’re not interested in who's making money, we’re interested in whether these drugs are available or not. We think they should be.”
The NICE ruling – which allows those already on the drugs to keep getting them - did not surprise many experts, as it upheld an earlier decision announced in March 2005. The drugs appear to be relatively cheap, but the Alzheimer’s Society and others are convinced that the decision was taken on cost grounds alone as NICE did conclude that the drugs were clinically effective. NICE rejected appeals from patient, carer and professional
groups, as well as the drug manufacturers, and says that for many patients there is "no benefit" from taking the drugs, and that it doesn't want to give them or their carers "false hope."
"We have a responsibility to help the NHS spend its money wisely," said a spokeswoman. "It is far better to treat patients for whom the drugs have the greatest benefit, and evidence has shown that these are patients with moderate Alzheimer's disease."
Roy Jones, director of the Research Institute for the Care of the Elderly in Bath, and a professor of gerontology, the study of ageing, was one of those who gave evidence to the appeals committee. He can’t understand how it upheld the earlier verdict.
“We are now being told to diagnose people with mild Alzheimer’s but then tell them that we can’t give them drugs - so they should come back when they’ve deteriorated, then we can try to improve their symptoms again.
“This is a very unusual concept. No one says to someone with mild diabetes,
we’ll treat you when you’re worse. It puts doctors into difficulties to have
to say this to patients. It’s a real ethical dilemma.”
Professor Jones is curious about the model that NICE used to determine the cost effectiveness of the drug in the different stages of the disease (this will also be one of the drug manufacturers’ main bones of contention in the judicial review). The decision was dependent on a complicated model that uses a measurement called a “quality adjusted life year”, but Alzheimer's experts say that it isn't clear exactly how this has all been worked out.
Professor Jones is particularly concerned that the calculations don’t fully take account of how the drugs may enable patients to be looked after at home, rather than in expensive care, for much longer. Nor does he think the organisation properly considered the positive effects the drugs have on carers. “Carers who are stressed use their own doctors more for problems such as anxiety and depression caused by dealing with the day to say difficulties of looking after someone with the disease," he says. “That’s part of the overall cost of Alzheimer’s to society.
"The evidence that these drugs work in mild Alzheimer’s is undoubted and NICE accepts that, but they used a particular model to work out cost-efficiency, and our advice was ignored. It looks as if we are going back to the situation we used to have – when getting the drugs you need depends on whether you can afford it.”
According to the Alzheimer's Society, the benefits of the drug treatments for people with Alzheimer's disease in both the mild and moderate stages are evident from the results of more than 30 placebo controlled trials which were evaluated as part of the Cochrane Collaboration, the leading body for undertaking systematic reviews of treatments. The research also suggested that people who began drug treatment at a later stage never caught up with those who began earlier. This implies that earlier treatment leads to an improved long-term prognosis.
Dr David Wilkinson, a psychiatrist and founder of the Memory Assessment and Research Centre, at Moorgreen Hospital in Southampton, agrees.
“Everybody involved in the use of these drugs knows they work,” he says. “I gave evidence to the committee on this, but they didn’t want to hear it. Yet the data from analyses of clinical trials shows that the key to getting the most benefits from these drugs is to start patients off on them early, and for them to be used continuously.”
“I’ve been working in this field for 25 years,” says Dr Wilkinson, who describes the NICE decision as a “betrayal” of patients and their families, and considers it “ageist”. “Treatments have got so much better – we simply don’t see the decline we used to, as the drugs change the course of the disease, slowing its progression down. But what we’re doing now is turning the clock back. The decision on Memantine means doctors can only
give people tranquilisers to calm them down in the later stages, when they get agitated, while the ruling on the other drugs suggests that if we diagnose patients early, we then do nothing to help. That’s wrong. We’ve got an ageing population, and it’s absolutely crucial that we make sure people remain independent for longer.”
Dr Wilkinson says that one of the main problems with the decision is its rigidity about determining who is or isn’t eligible for the drugs. The NICE ruling relies heavily on a patient's mini mental state examination (MMSE) score. This examination - a series of questions and tests covering topics such as memory, language, writing and orientation – was originally designed as a screening tool for dementia. It does not enable doctors to diagnose or rule out the disease, but to enables them to decide whom they should further investigate. However, NICE uses it to measure how severe the disease is, stating that only people with a score of between 10 and 20 (out of 30) will have access to the main three drugs. However, patients with a MMSE of 20 may already be having major difficulties with memory and managing everyday activities.
There is no common sense here, and it is not good medicine to take decisions which aren't on an individual basis,” says Dr Wilkinson. “We know that these drugs work in ways that this test can’t measure - on behaviour, mood and sleep - and we have data that was not available in the early trials, but has been clearly seen in more recent studies, which shows that these important aspects of the disease treatment were ignored."
Experts also argue that there are other problems with using the MMSE test so strictly. Scores can differ from day to day. For example, those with a high level of education may score highly, even if they are in the moderate rather than mild stage of the disease.
“For years, people have tried to practise for these tests to achieve the best score they can and reassure themselves that they are not deteriorating,” says Hunt. “In the future, perhaps they will deliberately try to forget things, so that they can get the drugs.”
There is ongoing research into the field of drug treatments, vaccines and blood tests to diagnose Alzheimer’s disease. However, at present, the four drugs subject to the NICE ruling are the only treatments available – around 60,000 people are currently taking them.
Research has shown that there is not enough of a chemical called acetylcholine – used for memory and communication - being produced in the brains of people with Alzheimer's disease. Acetylcholine is broken down by an enzyme called acetylcholinesterase, and this damages communication between cells. Three of the drugs, the acetylcholinesterase inhibitors Aricept, Reminyl and Exelon, work in similar ways to prevent this enzyme from breaking down the acetylcholine in the brain, while Ebixa works by blocking a messenger chemical that damages brain cells, known as a neurotransmitter glutamate.
“The drugs are very effective,” says Dr Wilkinson. “I would probably resign first before telling a patient that they had Alzheimer’s but couldn’t have these drugs.”
The guidelines issued by NICE are not mandatory, but if local primary care trusts - which take control of local health care - do follow them, no budget will be provided for doctors to prescribe these drugs as they wish. “We’re told that clinical judgment is up to the doctor, but if we decide to prescribe them, then we’ll be overspending and something else will be taken away from our budgets,” says Dr Wilkinson.
Back in 2001 NICE recommended that the three drugs (Ebixa wasn’t then licensed) for treating Alzheimer’s disease should be made available on the NHS. The Health Minister at the time, John Hutton, said the announcement represented “a step forward in the treatment of Alzheimer’s disease” and that it would make a “real difference to the lives of tens of thousands of people". With the more recent costing appraisal that, of course, has
changed. NICE has also since claimed that the drugs are not effective for everyone.
“It’s true that not everybody benefits from the drugs, but that’s not an acceptable reason for denying them to people for whom they do make a big difference,” says Mr Hunt. “Our research, which NICE accepts, suggests that around 50 per cent of people benefit, while those who don’t simply stop taking them.
“The question is how to make sure people are not unnecessarily prescribed them, rather than to prevent everybody in the mild or severe stages of the disease from getting them.”
Andrew Dillon, NICE's chief executive, has said that he is “disappointed” to hear of the judicial review proceedings, and that any court action would “divert energy and funding” from NICE’s work.
“Health service funding is limited, and it is our job to assess the clinical and cost-effectiveness of both drug and non-drug interventions to ensure the money spent by the NHS is well spent.
“Our consultation, decision-making and appeals processes are transparent and fair. We share our methodology and enable our stakeholders to see the basis on which our experts arrive at their decisions. We invite patients, medical professionals and anyone who has an interest to express their views and comment on our proposals.”
“I’d be interested to know what someone on the committee would do if a member of their family got mild Alzheimer’s,' says Prof Jones. If it was someone in my family, I wouldn’t want to wait until they got worse before they received the drugs.”
Mary says she’s sure that without Aricept, John’s care would be costing a lot more, while the couple’s quality of life would be far poorer.
“Although John is now worse than he was, and deteriorating all the time, I still believe the drugs are holding the disease back,” she says. “If he hadn’t taken them, he’d have deteriorated so quickly and he might be in a care home now.
”I was 33 when my first husband, David Legge, died of cancer, leaving me with two young daughters. That was in 1977, but back then, David, who was also 33, was given
every drug he needed. Now we’re in 2007, and if John was to be diagnosed now, instead of seven years ago, he wouldn’t be able to get the drugs he needs. That’s age discrimination, and also discrimination against Alzheimer's as a disease, because drugs are available for other illnesses. I can’t believe it’s happening today.”
Meanwhile, John says that people must have access to the drugs. “I’m a person who never wants to give up and I do want to keep going,” he says, “It’s the Aricept that has allowed me to do that. If I didn’t have it, I’d be lost.”
To donate to the Alzheimer's Society appeal, log onto: www.alzheimers.org.uk/emergencyappeal or ring the donation hotline on 0845
306 0898
John and Mary Stevenson's daughter, Rebecca, is running the NY Marathon in aid of the Alzheimer's Society. Please sponsor her at http://www.justgiving.com/rstevenson .
Wednesday 28 February 2007
Perfect timing
I have an article in the Guardian about natural family planning. Please follow this link, http://www.guardian.co.uk/g2/story/0,,2022065,00.html, to read it online, or see below for my original piece.
Can natural family planning really be as effective as the pill? New research suggests that it is, says Sarah Ebner - once you have learned the ropes
Tuesday February 27, 2007
The Guardian
Women rejoice! Finally there appears to be an effective method of contraception which is in sync with your body. Except that it isn’t new at all as latest research suggests going back to basics. Could natural family planning - which removes the need for hormones, injections and the delightfully named intrauterine devices - really be the answer?
“Women know about all types of contraception from the pill to the cap, but nobody talks about what you can do naturally,” says Toni Belfield from the Family Planning Association. “If you’re taught right, then this is a method you can use for life.”
The new research, which is published in the journal Human Reproduction, showed that one particular method of natural family planning was just as effective as the pill. The Sympto-thermal method or STM, uses two indicators - body temperature, and changes in cervical mucus - to identify the most fertile phase of a woman’s menstrual cycle.
“This puts contraception under a woman’s control,” says Toni Belfield. “It’s easy to learn, it can enhance a relationship, and it’s also very easy to stop if a woman decides she does want to become pregnant.”
Rebecca is just one woman who was eager to try the Sympto-thermal method. The 25-year-old musician began using it after a bad experience with an IUD (intrauterine device) which left her in constant pain and bleeding. Ironically, she only started using that because the vaginal ring – which contains a combination of oestrogen and progesterone – had left her unhappy and suffering from mood swings.
“I loved the fact that STM didn’t require hormones, or putting anything unnatural in my body,” she says. “It wasn’t going to give me any pain, and was also going to make me more aware of my body. I was very happy to try it.”
Rebecca, 25, and her husband Geoff, were taught how to use the method by Jane Knight, a specialist nurse who runs a NHS fertility clinic in Oxford. Now Rebecca takes her body temperature each morning, is aware of any changes in her cervix and monitors any changes in her cervical secretions.
“STM has helped me to be aware of my fertility cycle,” says Rebecca. “It did take a little time to get used to, but then it became obvious. It hasn’t been at all problematic.”
Professor Petra Frank-Hermann, from the University of Heidelberg, led the new research.
“For a contraceptive method to be rated as highly as the hormonal pill, there should be less than one pregnancy per 100 women per year when the method is used correctly,” she says. “The pregnancy rate for women who correctly used the STM method in our study was 0.4%, which can be interpreted as one pregnancy occurring per 250 women per year. Therefore, we maintain that the effectiveness of STM is comparable to the effectiveness of modern contraceptive methods such as oral contraceptives.”
Of course, natural family planning has been around for years, and has often been used by those who oppose contraception on religious grounds. But the so-called rhythm method – which simply involved counting the days of the menstrual cycle - has long caused despair in family planning circles.
“It went out with the ark,” says Toni Belfield. “People talk about rhythm and natural family planning as a kind of Russian roulette, but once you know the signs and symptoms of your body, they’re so powerful. There really shouldn’t be any stigma about it.”
According to the most recent statistics, the pill, which is used by nearly a quarter of women, is still the most common method of contraception in the UK. The second most popular method of contraception is the condom, used by 22 per cent of couples, with around four per cent using hormonal injections or implants, and another four percent using IUDs. Condoms are the only barrier against sexually transmitted diseases, but have a 2 per cent failure rate, as opposed to around one percent for the pill and IUDs. Diaphragms and caps are only around 92 to 96 per cent effective.
“Natural family planning is successful, but less than one percent are using it,” says Toni Belfield.
Jane Knight, who runs the website, www.fertilityuk.org, has taught hundreds of women the natural family planning method.
“Many of them are at a time in their lives where they don’t want to be using pills anymore,” she says. “They’re often in their mid twenties to thirties and in a steady relationship. We need to get away from the idea that this is for particularly well-educated women. It’s a lot simpler if you’re a bit more in touch with your body, and it’s a method which needs both partners to be committed, but it’s not just for the educated.”
It’s true that anybody can use this natural method, but it certainly does need commitment. It’s not for the scatterbrained, as women must keep daily records, and according to Jane Knight, there’s a “learning phase” of around three months. However, this can take longer if a woman is stopping a hormonal contraceptive, as hormones can interfere with the calculations.
Perhaps more importantly, anyone following STM has to realise that there will be certain times each month – when a woman is most fertile, and according to some, most lustful - when sex is simply not allowed. The obvious solution would be to use a condom, but Toni Belfield says that might not be the only answer.
“There are other things you can do in the fertile time, just not penetration,” she says. “And all those other things can enhance a relationship.”
Rebecca agrees. “Eventually we’re hoping never to use the barrier method at all,” she says.
It all sounds perfect, if you’re organised, but it’s clearly not suitable for people who are still looking for their perfect match. After all, it might be difficult to explain that you’re abstaining from sex because of your chosen method of contraception.
Some people also feel that natural family planning is not for the young.
“If someone undergoes the necessary training, it’s very effective,” says Catherine Evans, from Brook, the sexual health charity for young people. “But it doesn’t protect you against sexually transmitted infections, so it’s not a method we would promote.
“Unless you’re in a relationship where there’s no risk of infection, we don’t think it’s a good idea. We would recommend using condoms.”
Rebecca admits that the first time she and Geoff “took the leap” into having sex with no other contraception, it was “a little scary.”
“But we did it,” she says. “And I feel that we’re learning more all the time. Taking these steps has led me to become more curious in other ways. It’s made me more aware of what’s going on in my body and I feel it’s really changed our sexual life in a positive way. It’s really liberating.”
The Family Planning Association can provide more details about natural family planning, and also about NFP teachers.
www.fpa.org.uk
'I didn't want hormones or condoms'
Penny Warren and her husband Martin, an Anglican minister, came across the natural family planning method 26 years ago through the Couple to Couple League, an American-led organisation which aims “to share the Good News of Natural Family Planning”.
The couple are enthusiastic proponents, still use the method and teach it too. They have three children, and live in North Devon.
Penny, 47, says:
“I was looking for something which didn’t involve going to the doctor. I didn’t want hormones or condoms and I didn’t fancy IUDs.
Martin was studying in Cambridge and Couple to Couple were running a course. Although it was run from a Catholic perspective and we aren’t Catholic, we went to four sessions (across four months) and it taught us the basic rules.
What we learnt, very clearly, was how to take your temperature and how to chart it. We were also taught how I could use my mucus signs, which change throughout your cycle. I was told what to look for, and charted this alongside my temperature.
We were advised not to use the method while we were still learning, but that wasn’t a problem for us, because we weren’t sleeping together at that point.
From our experience, it’s been terrific. We haven’t ever found it difficult to manage - it becomes an everyday habit, like brushing your teeth - and I wouldn’t swap it for anything. The only problem comes when your body’s feeling very fertile, you’re crying out for sex and you can’t have it!
Lots of people say they can’t follow this type of family planning, perhaps because they don’t have regular periods. But the whole point is that it’s personal to you, so it can work for anyone. What it does is teach you exactly what’s going on with your body. I know my body really well and that’s very liberating for a woman.”
More on The Couple to Couple League in Great Britain can be found at: http://www.cclgb.org.uk/
Can natural family planning really be as effective as the pill? New research suggests that it is, says Sarah Ebner - once you have learned the ropes
Tuesday February 27, 2007
The Guardian
Women rejoice! Finally there appears to be an effective method of contraception which is in sync with your body. Except that it isn’t new at all as latest research suggests going back to basics. Could natural family planning - which removes the need for hormones, injections and the delightfully named intrauterine devices - really be the answer?
“Women know about all types of contraception from the pill to the cap, but nobody talks about what you can do naturally,” says Toni Belfield from the Family Planning Association. “If you’re taught right, then this is a method you can use for life.”
The new research, which is published in the journal Human Reproduction, showed that one particular method of natural family planning was just as effective as the pill. The Sympto-thermal method or STM, uses two indicators - body temperature, and changes in cervical mucus - to identify the most fertile phase of a woman’s menstrual cycle.
“This puts contraception under a woman’s control,” says Toni Belfield. “It’s easy to learn, it can enhance a relationship, and it’s also very easy to stop if a woman decides she does want to become pregnant.”
Rebecca is just one woman who was eager to try the Sympto-thermal method. The 25-year-old musician began using it after a bad experience with an IUD (intrauterine device) which left her in constant pain and bleeding. Ironically, she only started using that because the vaginal ring – which contains a combination of oestrogen and progesterone – had left her unhappy and suffering from mood swings.
“I loved the fact that STM didn’t require hormones, or putting anything unnatural in my body,” she says. “It wasn’t going to give me any pain, and was also going to make me more aware of my body. I was very happy to try it.”
Rebecca, 25, and her husband Geoff, were taught how to use the method by Jane Knight, a specialist nurse who runs a NHS fertility clinic in Oxford. Now Rebecca takes her body temperature each morning, is aware of any changes in her cervix and monitors any changes in her cervical secretions.
“STM has helped me to be aware of my fertility cycle,” says Rebecca. “It did take a little time to get used to, but then it became obvious. It hasn’t been at all problematic.”
Professor Petra Frank-Hermann, from the University of Heidelberg, led the new research.
“For a contraceptive method to be rated as highly as the hormonal pill, there should be less than one pregnancy per 100 women per year when the method is used correctly,” she says. “The pregnancy rate for women who correctly used the STM method in our study was 0.4%, which can be interpreted as one pregnancy occurring per 250 women per year. Therefore, we maintain that the effectiveness of STM is comparable to the effectiveness of modern contraceptive methods such as oral contraceptives.”
Of course, natural family planning has been around for years, and has often been used by those who oppose contraception on religious grounds. But the so-called rhythm method – which simply involved counting the days of the menstrual cycle - has long caused despair in family planning circles.
“It went out with the ark,” says Toni Belfield. “People talk about rhythm and natural family planning as a kind of Russian roulette, but once you know the signs and symptoms of your body, they’re so powerful. There really shouldn’t be any stigma about it.”
According to the most recent statistics, the pill, which is used by nearly a quarter of women, is still the most common method of contraception in the UK. The second most popular method of contraception is the condom, used by 22 per cent of couples, with around four per cent using hormonal injections or implants, and another four percent using IUDs. Condoms are the only barrier against sexually transmitted diseases, but have a 2 per cent failure rate, as opposed to around one percent for the pill and IUDs. Diaphragms and caps are only around 92 to 96 per cent effective.
“Natural family planning is successful, but less than one percent are using it,” says Toni Belfield.
Jane Knight, who runs the website, www.fertilityuk.org, has taught hundreds of women the natural family planning method.
“Many of them are at a time in their lives where they don’t want to be using pills anymore,” she says. “They’re often in their mid twenties to thirties and in a steady relationship. We need to get away from the idea that this is for particularly well-educated women. It’s a lot simpler if you’re a bit more in touch with your body, and it’s a method which needs both partners to be committed, but it’s not just for the educated.”
It’s true that anybody can use this natural method, but it certainly does need commitment. It’s not for the scatterbrained, as women must keep daily records, and according to Jane Knight, there’s a “learning phase” of around three months. However, this can take longer if a woman is stopping a hormonal contraceptive, as hormones can interfere with the calculations.
Perhaps more importantly, anyone following STM has to realise that there will be certain times each month – when a woman is most fertile, and according to some, most lustful - when sex is simply not allowed. The obvious solution would be to use a condom, but Toni Belfield says that might not be the only answer.
“There are other things you can do in the fertile time, just not penetration,” she says. “And all those other things can enhance a relationship.”
Rebecca agrees. “Eventually we’re hoping never to use the barrier method at all,” she says.
It all sounds perfect, if you’re organised, but it’s clearly not suitable for people who are still looking for their perfect match. After all, it might be difficult to explain that you’re abstaining from sex because of your chosen method of contraception.
Some people also feel that natural family planning is not for the young.
“If someone undergoes the necessary training, it’s very effective,” says Catherine Evans, from Brook, the sexual health charity for young people. “But it doesn’t protect you against sexually transmitted infections, so it’s not a method we would promote.
“Unless you’re in a relationship where there’s no risk of infection, we don’t think it’s a good idea. We would recommend using condoms.”
Rebecca admits that the first time she and Geoff “took the leap” into having sex with no other contraception, it was “a little scary.”
“But we did it,” she says. “And I feel that we’re learning more all the time. Taking these steps has led me to become more curious in other ways. It’s made me more aware of what’s going on in my body and I feel it’s really changed our sexual life in a positive way. It’s really liberating.”
The Family Planning Association can provide more details about natural family planning, and also about NFP teachers.
www.fpa.org.uk
'I didn't want hormones or condoms'
Penny Warren and her husband Martin, an Anglican minister, came across the natural family planning method 26 years ago through the Couple to Couple League, an American-led organisation which aims “to share the Good News of Natural Family Planning”.
The couple are enthusiastic proponents, still use the method and teach it too. They have three children, and live in North Devon.
Penny, 47, says:
“I was looking for something which didn’t involve going to the doctor. I didn’t want hormones or condoms and I didn’t fancy IUDs.
Martin was studying in Cambridge and Couple to Couple were running a course. Although it was run from a Catholic perspective and we aren’t Catholic, we went to four sessions (across four months) and it taught us the basic rules.
What we learnt, very clearly, was how to take your temperature and how to chart it. We were also taught how I could use my mucus signs, which change throughout your cycle. I was told what to look for, and charted this alongside my temperature.
We were advised not to use the method while we were still learning, but that wasn’t a problem for us, because we weren’t sleeping together at that point.
From our experience, it’s been terrific. We haven’t ever found it difficult to manage - it becomes an everyday habit, like brushing your teeth - and I wouldn’t swap it for anything. The only problem comes when your body’s feeling very fertile, you’re crying out for sex and you can’t have it!
Lots of people say they can’t follow this type of family planning, perhaps because they don’t have regular periods. But the whole point is that it’s personal to you, so it can work for anyone. What it does is teach you exactly what’s going on with your body. I know my body really well and that’s very liberating for a woman.”
More on The Couple to Couple League in Great Britain can be found at: http://www.cclgb.org.uk/
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