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.
Tuesday, 8 May 2007
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/
Tuesday, 20 February 2007
What's the alternative?
Today I have an article in the Guardian about alternative therapies and the boom in using them to treat young children.
To read it online, click on http://www.guardian.co.uk/g2/story/0,,2016867,00.html
Otherwise, read on....
Risky alternative?
More and more parents are taking their children to complementary therapists. But just how safe and effective are such treatments? Sarah Ebner reports
There's a baby boom in the world of complementary medicine. Therapists are treating more and more infants, as many parents abandon long waits at the doctor's surgery in favour of costly visits to alternative practitioners.
"There's much more of an awareness of what we do," says June Tranmer, who specialises in paediatric acupuncture at the Healing Clinic in York. "We have had hundreds of children coming through our doors and the numbers keep going up."
Probably the most popular treatments are baby massage and yoga - the infant Leo Blair was reputedly taken to baby massage sessions run by beauty therapist Bharti Vyas - as well as homeopathy and even acupuncture, kinesiology (which claims to diagnose imbalances through analysing movement) and chiropractic. But why is the next generation having these treatments? Alternative therapists usually spend longer with their patients and claim remarkable results. So for parents with money and initiative, they are an attractive option.
Caroline Hind took her twins, Corem and Jaimie, to see Tranmer at the end of last year. The boys, who turn two at the end of this month, had whooping cough. "There was nothing the doctor could do, as it was really a nursing issue," says Hind. "We suffered broken nights with the boys coughing so much they were sick." Tranmer spent an hour with the family, before carrying out acupressure and cupping treatments. "It was a really calming experience for them, and for us," says Hind. "Everything was so gentle. Afterwards both babies slept through the night." The whooping cough didn't go away completely, but Hind is sure the treatments helped. "I suppose you never know for sure, but it did seem to make a difference," she says. "I think doctors are very good at serious illnesses, but for allergies, migraines and the sorts of things where they're at a bit of a loose end, this is a good option. Medicine is so reliant on drugs. This is a gentler alternative."
Many medical professionals, however, disagree. "I remain sceptical until there's good evidence," says paediatrician Jethro Herberg. "My antagonism is proportional to the degree of harm they can do. At best they are benign and, at worst, can do an awful lot of harm. Herbal remedies are littered with case studies where they have done damage. People have an inconsistent view ... If they go to the doctor, they demand an extremely high level of proof that what they're getting is efficient and not harmful. But they'll go and see an alternative practitioner, with no idea whether it could be harmful, or not."
Tranmer admits there is not a "huge body" of research, but questions who would finance it. "You can't do research for nothing, and drug companies won't fund us," she says. "Anyway, if you see a child screaming in pain, and they're better after you treat them, how do you deny it is working?"
Edzard Ernst, professor of complementary medicine at the Peninsula Medical School in Exeter, agrees that more evidence is needed. "Without proof, we only have hearsay and clinical experience, which can be misleading," he says. "Little children are very fragile and, to me, there is an ethical imperative to find more evidence. The official bodies - the NHS or Wellcome Trust, which have no commercial interest - should fund research."
In the meantime, Ernst is dubious about the benefits of treating infants this way. "Gentle massage is definitely very good for babies, but kinesiology is nonsense," he says. He also believes that acupuncture could be downright dangerous. "Everything is so tiny in a baby. In a jiffy, a needle could be in the heart or lung." Although, as acupuncturist, Vera Wong, points out, actual needles are rarely used on babies. Acupressure is more common: "We use skin rollers, toy tractors and spring-loaded pointers usually used on adult ears," she says.
According to Ernst, the main determinant of whether a child is treated with alternative medicine is whether its parents also use it. However, homeopath Jo Redmond, director of the Health Works clinic in east London, says they are treating more young families and more black and Asian patients. "People think it is only a white, middle-class domain, or only for people who have treatments themselves. We are seeing parents who are fed up with doctors, and don't want endless prescriptions."
Around three quarters of Redmond's 1,000 patients are babies and small children. Ruqiyah Henry is one of those. She was seven months old and suffering from severe eczema when her parents, Aa'isha Henry and Abdul Raheem, took her to the homeopath. "She was scratching all the time," says Henry, "waking up in the night and she was so distressed. It was awful to see her unhappy."
The doctor had prescribed hydrocortisone cream and antibiotics. "The cream was so strong I was concerned about putting it on her face. The eczema came back each day ... I didn't want her to be on a steroid cream for ever." When one of Henry's friends suggested homeopathy, she decided to give it a go. Interestingly, her health visitor also recommended it. "The doctor said there was no cure ... she would have to grow out of it. The homeopath said she could be cured," she says.
After two monthly sessions, during which Ruqiyah was given homeopathic pills nearly every day, her eczema cleared up. "Her skin is so soft and smooth," says Henry. "I can't believe the results." With treatments at around £30, Henry wishes it was available on the NHS. "We're not rich at all," she says, "but it is worth it."
Despite these results, homeopathy has not been proved clinically effective. Ernst, who has just published a review of homeopathic trials, claims "there is no good evidence" it works for children.
And while Herberg sympathises with parents "driven to distraction" by a difficult baby, "it shouldn't surprise anyone that children get better," he says. "A lot of these alternative therapies treat the mother rather than the baby, and placebo also has a measurable effect."
Redmond naturally disputes that view. "How does the placebo effect work with babies and animals?" she asks. "Colds and skin problems can't clear up just because mum's calmer and happier".
To read it online, click on http://www.guardian.co.uk/g2/story/0,,2016867,00.html
Otherwise, read on....
Risky alternative?
More and more parents are taking their children to complementary therapists. But just how safe and effective are such treatments? Sarah Ebner reports
There's a baby boom in the world of complementary medicine. Therapists are treating more and more infants, as many parents abandon long waits at the doctor's surgery in favour of costly visits to alternative practitioners.
"There's much more of an awareness of what we do," says June Tranmer, who specialises in paediatric acupuncture at the Healing Clinic in York. "We have had hundreds of children coming through our doors and the numbers keep going up."
Probably the most popular treatments are baby massage and yoga - the infant Leo Blair was reputedly taken to baby massage sessions run by beauty therapist Bharti Vyas - as well as homeopathy and even acupuncture, kinesiology (which claims to diagnose imbalances through analysing movement) and chiropractic. But why is the next generation having these treatments? Alternative therapists usually spend longer with their patients and claim remarkable results. So for parents with money and initiative, they are an attractive option.
Caroline Hind took her twins, Corem and Jaimie, to see Tranmer at the end of last year. The boys, who turn two at the end of this month, had whooping cough. "There was nothing the doctor could do, as it was really a nursing issue," says Hind. "We suffered broken nights with the boys coughing so much they were sick." Tranmer spent an hour with the family, before carrying out acupressure and cupping treatments. "It was a really calming experience for them, and for us," says Hind. "Everything was so gentle. Afterwards both babies slept through the night." The whooping cough didn't go away completely, but Hind is sure the treatments helped. "I suppose you never know for sure, but it did seem to make a difference," she says. "I think doctors are very good at serious illnesses, but for allergies, migraines and the sorts of things where they're at a bit of a loose end, this is a good option. Medicine is so reliant on drugs. This is a gentler alternative."
Many medical professionals, however, disagree. "I remain sceptical until there's good evidence," says paediatrician Jethro Herberg. "My antagonism is proportional to the degree of harm they can do. At best they are benign and, at worst, can do an awful lot of harm. Herbal remedies are littered with case studies where they have done damage. People have an inconsistent view ... If they go to the doctor, they demand an extremely high level of proof that what they're getting is efficient and not harmful. But they'll go and see an alternative practitioner, with no idea whether it could be harmful, or not."
Tranmer admits there is not a "huge body" of research, but questions who would finance it. "You can't do research for nothing, and drug companies won't fund us," she says. "Anyway, if you see a child screaming in pain, and they're better after you treat them, how do you deny it is working?"
Edzard Ernst, professor of complementary medicine at the Peninsula Medical School in Exeter, agrees that more evidence is needed. "Without proof, we only have hearsay and clinical experience, which can be misleading," he says. "Little children are very fragile and, to me, there is an ethical imperative to find more evidence. The official bodies - the NHS or Wellcome Trust, which have no commercial interest - should fund research."
In the meantime, Ernst is dubious about the benefits of treating infants this way. "Gentle massage is definitely very good for babies, but kinesiology is nonsense," he says. He also believes that acupuncture could be downright dangerous. "Everything is so tiny in a baby. In a jiffy, a needle could be in the heart or lung." Although, as acupuncturist, Vera Wong, points out, actual needles are rarely used on babies. Acupressure is more common: "We use skin rollers, toy tractors and spring-loaded pointers usually used on adult ears," she says.
According to Ernst, the main determinant of whether a child is treated with alternative medicine is whether its parents also use it. However, homeopath Jo Redmond, director of the Health Works clinic in east London, says they are treating more young families and more black and Asian patients. "People think it is only a white, middle-class domain, or only for people who have treatments themselves. We are seeing parents who are fed up with doctors, and don't want endless prescriptions."
Around three quarters of Redmond's 1,000 patients are babies and small children. Ruqiyah Henry is one of those. She was seven months old and suffering from severe eczema when her parents, Aa'isha Henry and Abdul Raheem, took her to the homeopath. "She was scratching all the time," says Henry, "waking up in the night and she was so distressed. It was awful to see her unhappy."
The doctor had prescribed hydrocortisone cream and antibiotics. "The cream was so strong I was concerned about putting it on her face. The eczema came back each day ... I didn't want her to be on a steroid cream for ever." When one of Henry's friends suggested homeopathy, she decided to give it a go. Interestingly, her health visitor also recommended it. "The doctor said there was no cure ... she would have to grow out of it. The homeopath said she could be cured," she says.
After two monthly sessions, during which Ruqiyah was given homeopathic pills nearly every day, her eczema cleared up. "Her skin is so soft and smooth," says Henry. "I can't believe the results." With treatments at around £30, Henry wishes it was available on the NHS. "We're not rich at all," she says, "but it is worth it."
Despite these results, homeopathy has not been proved clinically effective. Ernst, who has just published a review of homeopathic trials, claims "there is no good evidence" it works for children.
And while Herberg sympathises with parents "driven to distraction" by a difficult baby, "it shouldn't surprise anyone that children get better," he says. "A lot of these alternative therapies treat the mother rather than the baby, and placebo also has a measurable effect."
Redmond naturally disputes that view. "How does the placebo effect work with babies and animals?" she asks. "Colds and skin problems can't clear up just because mum's calmer and happier".
Saturday, 17 February 2007
Goodbye Mary, Hello Manny
Today I have an article in the Weekend Section of the Daily Telegraph. But there's no need to click on, as I've reproduced it in full, below...
Now it's Manny Poppins
Sarah Ebner meets the parents who prefer a shot of testosterone to a spoonful of sugar
By Sarah Ebner
She may be wowing them in the West End, but it appears that Mary Poppins is out of fashion. According to those in the know, if we want to ensure that our sons and daughters grow up to be well-rounded individuals, we need a modern solution. The woman who was "practically perfect in every way'' has a rival: the manny.
If you've never heard the term, you're a few steps behind in the childcare stakes. For the uninitiated, author Holly Peterson is here to shed some light on the issue. As one of the characters in her new book, aptly named The Manny, explains: "It's a manny. M for male nanny... Think of it as the older brother we all dreamt of, but with the patience only money can buy.''
Peterson first heard about mannies soon after having her third child. She felt that her son, Jack, then three, was being "squashed'' by spending days with his older and younger sisters, as well as his mother and nanny.
Now it appears that mannies are all the rage. Gwyneth Paltrow and Britney Spears are fans, and the attractions seem obvious. It's not so much a spoonful of sugar, as a shot of testosterone around the house. Not only do mannies keep temptation at bay (female nannies, as Jude Law discovered, can be a bit too distracting), but they happily play in the garden for hours, and seem genuinely interested in sports, Lord of the Rings, Spider-Man and snails.
"Boys play differently to women,'' says Peterson, 42, whose children are now 10, eight and four. "The nanny is more of a comforter, while the manny is a 'throw me across the room' kind of guy. They fool around, play football and are happy to run around and around the park. I thought Jack would really benefit from it and he has.''
They may sound like a perfect playmate for any sons you may have, but what about the girls? Peterson thinks a male role model is good for them too. "Mannies have a different attitude,'' she says. "They see situations in another way.''
But hiring a manny wasn't just a way for Peterson to solve her childcare issues. It also led to a new career, as a novelist. The book - her first - sold for $1 million in the US alone, with the film rights fetching another $600,000.
The story is set in what Peterson describes as "this ridiculous, hilarious world of rich people on the Upper East Side''. It's a place she knows well as she grew up in, and still lives in, that very exclusive part of New York. Some families have one nanny per child, while housekeepers and drivers are de rigueur. However, as a Newsweek journalist, Peterson says she's a step apart. "The rich in New York are a very peculiar group,'' she says. "But 95 per cent of my friends are not in that world.''
Peterson's book, out next week, is certainly being published at the right time, as mannies have become increasingly popular in Britain. My Big Buddy (http://www.mybigbuddy.com">www.mybigbuddy.com>), an agency specialising in male nannies, recently launched in London. And Gumtree (http://www.gumtree.com), a website used by working parents to look for childcare, reports that searches for "male'' or "male nanny'' have gone up sevenfold in the past few months.
With increasing numbers of single parents, as well as older fathers who might struggle to run around a football pitch, mannies may well fill a gap. But one recent survey suggested another reason for the rising demand. In an apparent blow against sisterhood, almost 80 per cent of mothers admitted that they felt threatened by attractive female nannies, while 94 per cent said they would consider a male nanny instead. "We simply don't have enough men on our books,'' says Oliver Black, director of Tinies, the supplier of childcare staff which carried out the survey. "Only five per cent of our nannies are male.''
One of those is Craig Smith, 20, who works as a manny for Alison and Michael Goff in Sevenoaks, Kent. Craig looks after the Goffs' three sons, Hamish, 10, Louis, eight, and Theo, three. "I couldn't imagine doing the same thing every day,'' says Smith, who explains that he always wanted to work with children. "Every day is different and really rewarding too.''
Smith describes his three charges as "sporty and boisterous'' and much of his time is spent ferrying them to and from different sports activities. But he also attends mother and toddler clubs with Theo and plays "a lot'' of football with all three. Smith cooks for the boys too (although he admits that the domestic side is not his strong point).
"My friends are builders, carpenters and electricians. They laughed their heads off when I told them what I was going to do. But when I say that I've been playing in the garden, they're a bit jealous.''
He is sure that he got the job because the children are boys, but Alison Goff insists that's not true. "People assume that because I have boys, I wanted a male nanny, but he was the best person I interviewed,'' she says.
"I admit I've been surprised to see how the kids are happier with him, perhaps because he loves the rough and tumble and is physically fit and active. If you have three boys, it's no good having someone who wants to plait hair and paint fingernails.''
Holly Peterson would agree. Then again, she seems to have it all the book deal, the investment banker husband, and even a nanny and a manny.
But for those of us in the real world, choosing the perfect child-carer might never be the same again.
Now it's Manny Poppins
Sarah Ebner meets the parents who prefer a shot of testosterone to a spoonful of sugar
By Sarah Ebner
She may be wowing them in the West End, but it appears that Mary Poppins is out of fashion. According to those in the know, if we want to ensure that our sons and daughters grow up to be well-rounded individuals, we need a modern solution. The woman who was "practically perfect in every way'' has a rival: the manny.
If you've never heard the term, you're a few steps behind in the childcare stakes. For the uninitiated, author Holly Peterson is here to shed some light on the issue. As one of the characters in her new book, aptly named The Manny, explains: "It's a manny. M for male nanny... Think of it as the older brother we all dreamt of, but with the patience only money can buy.''
Peterson first heard about mannies soon after having her third child. She felt that her son, Jack, then three, was being "squashed'' by spending days with his older and younger sisters, as well as his mother and nanny.
Now it appears that mannies are all the rage. Gwyneth Paltrow and Britney Spears are fans, and the attractions seem obvious. It's not so much a spoonful of sugar, as a shot of testosterone around the house. Not only do mannies keep temptation at bay (female nannies, as Jude Law discovered, can be a bit too distracting), but they happily play in the garden for hours, and seem genuinely interested in sports, Lord of the Rings, Spider-Man and snails.
"Boys play differently to women,'' says Peterson, 42, whose children are now 10, eight and four. "The nanny is more of a comforter, while the manny is a 'throw me across the room' kind of guy. They fool around, play football and are happy to run around and around the park. I thought Jack would really benefit from it and he has.''
They may sound like a perfect playmate for any sons you may have, but what about the girls? Peterson thinks a male role model is good for them too. "Mannies have a different attitude,'' she says. "They see situations in another way.''
But hiring a manny wasn't just a way for Peterson to solve her childcare issues. It also led to a new career, as a novelist. The book - her first - sold for $1 million in the US alone, with the film rights fetching another $600,000.
The story is set in what Peterson describes as "this ridiculous, hilarious world of rich people on the Upper East Side''. It's a place she knows well as she grew up in, and still lives in, that very exclusive part of New York. Some families have one nanny per child, while housekeepers and drivers are de rigueur. However, as a Newsweek journalist, Peterson says she's a step apart. "The rich in New York are a very peculiar group,'' she says. "But 95 per cent of my friends are not in that world.''
Peterson's book, out next week, is certainly being published at the right time, as mannies have become increasingly popular in Britain. My Big Buddy (http://www.mybigbuddy.com">www.mybigbuddy.com>), an agency specialising in male nannies, recently launched in London. And Gumtree (http://www.gumtree.com), a website used by working parents to look for childcare, reports that searches for "male'' or "male nanny'' have gone up sevenfold in the past few months.
With increasing numbers of single parents, as well as older fathers who might struggle to run around a football pitch, mannies may well fill a gap. But one recent survey suggested another reason for the rising demand. In an apparent blow against sisterhood, almost 80 per cent of mothers admitted that they felt threatened by attractive female nannies, while 94 per cent said they would consider a male nanny instead. "We simply don't have enough men on our books,'' says Oliver Black, director of Tinies, the supplier of childcare staff which carried out the survey. "Only five per cent of our nannies are male.''
One of those is Craig Smith, 20, who works as a manny for Alison and Michael Goff in Sevenoaks, Kent. Craig looks after the Goffs' three sons, Hamish, 10, Louis, eight, and Theo, three. "I couldn't imagine doing the same thing every day,'' says Smith, who explains that he always wanted to work with children. "Every day is different and really rewarding too.''
Smith describes his three charges as "sporty and boisterous'' and much of his time is spent ferrying them to and from different sports activities. But he also attends mother and toddler clubs with Theo and plays "a lot'' of football with all three. Smith cooks for the boys too (although he admits that the domestic side is not his strong point).
"My friends are builders, carpenters and electricians. They laughed their heads off when I told them what I was going to do. But when I say that I've been playing in the garden, they're a bit jealous.''
He is sure that he got the job because the children are boys, but Alison Goff insists that's not true. "People assume that because I have boys, I wanted a male nanny, but he was the best person I interviewed,'' she says.
"I admit I've been surprised to see how the kids are happier with him, perhaps because he loves the rough and tumble and is physically fit and active. If you have three boys, it's no good having someone who wants to plait hair and paint fingernails.''
Holly Peterson would agree. Then again, she seems to have it all the book deal, the investment banker husband, and even a nanny and a manny.
But for those of us in the real world, choosing the perfect child-carer might never be the same again.
Thursday, 8 February 2007
Bullying: The lies that led to death and devastation
Today I have an article in the Independent about the issue of false accusations of bullying in schools.
If you want to read the article online, here's the link, http://education.independent.co.uk:80/schools/article2246762.ece
If you don't want to click and move on, then here's the piece in full....
When Lucy Cochrane was accused of bullying, her school was obliged to investigate. But the allegations were false - and now Lucy's parents are dead. What went wrong?Sarah Ebner reports on a tragic case
The Children's Commissioner, Sir Albert Aynsley-Green, has warned that relentless bullying is driving some children to the brink of suicide, while the number of children counselled by ChildLine about bullying rose by 12 per cent last year.
But what of those children who are accused of bullying, but aren't guilty? Just as it took years to recognise that charges of assault against teachers can be false, so people are starting to realise that accusing another child of bullying may simply be a way of getting them into trouble. And that trouble can have devastating results.
At the end of last year, Michael and Jane Connor were convicted of the murder of another set of parents, Maureen and Alex Cochrane. Their daughters, Natalie Connor and Lucy Cochrane, had been at the same schools and at some stage had fallen out.
Lucy, who has learning difficulties, was regarded by school staff as a pleasant but vulnerable girl who was bullied by Natalie. However, it was Natalie who claimed to her parents that Lucy was the bully, accusing Lucy of assaulting her at a dance class at school. A subsequent police investigation found the contentions to be entirely baseless, but they still had to be investigated.
Natalie's allegations, which were described during the Connors' murder trial at Manchester Crown Court as "groundless and an invention", goaded her parents and contributed to the ill-feeling between the families. The Connors plotted to set fire to the Cochranes' house and Michael Connor subsequently poured petrol through the letter box, killing both parents and seriously injuring Lucy.
Michael and Jane Connor were convicted of double murder, and Natalie Connor was convicted of manslaughter and causing grievous bodily harm with intent and arson.
Clearly this was an extreme case, but the prosecution lawyers agree that the false bullying allegations exacerbated the situation. Such claims are not entirely unusual.
"Contrary perspectives and malicious reports will always be part of bullying disputes," says Sir Albert, while John Stead, education adviser for the NSPCC and a former head teacher, agrees that false accusations are "certainly something that you come across". However, he adds, when a child makes a false accusation, it is often a cry for help.
"It's never straightforward," says Stead, who is also the Anti-Bullying Alliance co-ordinator for Yorkshire and Humberside. "Sometimes it's quite deliberate because a child wants to get someone else into trouble, but sometimes it may be that the child is unhappy because of something else, such as other children not playing with them. Occasionally there's almost a sense of delusion - the child actually believes they are being bullied."
Still, Stead is keen to emphasise that he believes most bullying accusations are true. "The danger is that children who are being bullied are ignored," he adds.
Joanna Ross (not her real name) accepts that it's important not to dismiss children who accuse others of bullying. However, she is also concerned that increased openness about the subject of bullying may be leading to false accusations. She's convinced that more care is needed with young children.
Ross's son Leo, 10, was accused of seriously bullying a younger boy towards the end of last year. The trouble began in the summer term when class teachers discussed bullying and then asked the children to fill in forms saying whether they had been bullied. One child - who was friendly with, and in the same class as, Ross's younger son, Callum - said that he had been bullied, by Leo and two of his friends. This boy, David, said that the older boys had told him to go away and said they didn't want to play with him.
Callum Ross says their teacher told David, then seven, that such behaviour was not bullying. However, the forms were filled in, and Leo and the two other boys were accused.
"Everyone thought it was minor," says Ross. "I spoke to David's father and he said that his son simply wanted to join in with the older boys and then when they didn't want him to, he would poke, prod and kick them. They would respond by cuffing him and telling him to go away. Neither of us was really concerned."
After the summer holidays, there were new, more serious allegations. David accused the boys of punching him, kicking him and kneeing him in the groin. He also said that they had "threatened to bully him more than he'd ever been bullied before".
"It was quite ironic, because one of the boys he had accused had been off sick on the days he specifically said some of these things had happened, so I really thought they couldn't be true," says Ross. "Still, it was awful. The previous term I had told Leo to keep away from David, and he assured me that he had, but as one of the oldest boys in the school, the younger ones want to play with him and his friends. David's father then came to speak to me and said he hadn't been concerned before because it was rough and tumble, but that now he felt it was getting serious. He thought there was no smoke without fire.
"He also said that the bullying had gone on for two years, even though for a lot of that time, David had been coming to my house to play with my younger son. He alleged that three times a week Leo and his friends had been kicking him, punching him and threatening him. He also said that they had been bullying his sister, Ruby, and held her upside down, threatening to drop her on her head.
"I was really worried about the whole thing, but most of it just didn't ring true. It's not simply that I would defend my own son, but the fact that when I started asking around, no one had seen any of this so-called bullying. The children attend a very small school, but none of David's friends knew anything about it, none of the teachers said that David had seemed unhappy or hurt and, despite him accusing Leo of forcing his head into the toilet on more than one occasion, no one had seen him with his hair wet or in tears."
John Stead says that falsely accusing another child of bullying is one way to seek attention.
"There aren't any easy answers when you've been falsely accused," he adds. "The biggest way we protect against false allegations is to look into it as soon as possible."
Ross agrees that, once the allegations had been made, the school had to look into them, and that they did so fairly. At this point Ruby admitted that she had made her story up, but David stuck to his.
"I think he was in a bit of a trap," says Ross. "His father had asked him many times if the accusations were true and he could have got into more trouble if he'd backed down."
However, Ross has a problem with the way the school initially went about encouraging the reports of bullying.
"The school gave out these forms and a lot of children felt they needed to fill them in," she says. "I think the school handled that badly, and I also felt the onus was on me to disprove everything. I thought they should have given my son some defence mechanism."
"Schools need to talk about what is and what isn't bullying and encourage children to talk about it," says Stead. "And I do believe we should be asking children every year how safe the school is. But I'm not sure we should be asking them to specifically name people."
Joanna Ross has some sympathy towards her son's accuser because of his age, and also because she thinks he might well have been unhappy.
"The family had moved a lot and were actually about to leave again to live abroad," she says. "It probably was disconcerting for David. His mother sent me an e-mail saying that they weren't going to pursue the accusations, that she didn't want any bother and that they would leave school a few weeks early. She also said that only the boys would 'know the truth' of what had happened.
"But that view has left my son and his friends under a cloud. If the school had actually believed David, my son would have been expelled. It's left him vulnerable and having learnt a funny lesson, that you can say bad things and get away with it.
"You have to take bullying seriously, but you also have to analyse it. Parents have to accept that children can be mean, but that's not necessarily bullying. There are noticeable symptoms when it comes to a child being bullied, but David wasn't unhappy, crying on the way to school or upset during the school day.
"If a small child picks on a big child they are in a win-win situation. If a big child lashes out, then he'll be accused of bullying. I've told Leo that he must now always walk away."
If you want to read the article online, here's the link, http://education.independent.co.uk:80/schools/article2246762.ece
If you don't want to click and move on, then here's the piece in full....
When Lucy Cochrane was accused of bullying, her school was obliged to investigate. But the allegations were false - and now Lucy's parents are dead. What went wrong?Sarah Ebner reports on a tragic case
The Children's Commissioner, Sir Albert Aynsley-Green, has warned that relentless bullying is driving some children to the brink of suicide, while the number of children counselled by ChildLine about bullying rose by 12 per cent last year.
But what of those children who are accused of bullying, but aren't guilty? Just as it took years to recognise that charges of assault against teachers can be false, so people are starting to realise that accusing another child of bullying may simply be a way of getting them into trouble. And that trouble can have devastating results.
At the end of last year, Michael and Jane Connor were convicted of the murder of another set of parents, Maureen and Alex Cochrane. Their daughters, Natalie Connor and Lucy Cochrane, had been at the same schools and at some stage had fallen out.
Lucy, who has learning difficulties, was regarded by school staff as a pleasant but vulnerable girl who was bullied by Natalie. However, it was Natalie who claimed to her parents that Lucy was the bully, accusing Lucy of assaulting her at a dance class at school. A subsequent police investigation found the contentions to be entirely baseless, but they still had to be investigated.
Natalie's allegations, which were described during the Connors' murder trial at Manchester Crown Court as "groundless and an invention", goaded her parents and contributed to the ill-feeling between the families. The Connors plotted to set fire to the Cochranes' house and Michael Connor subsequently poured petrol through the letter box, killing both parents and seriously injuring Lucy.
Michael and Jane Connor were convicted of double murder, and Natalie Connor was convicted of manslaughter and causing grievous bodily harm with intent and arson.
Clearly this was an extreme case, but the prosecution lawyers agree that the false bullying allegations exacerbated the situation. Such claims are not entirely unusual.
"Contrary perspectives and malicious reports will always be part of bullying disputes," says Sir Albert, while John Stead, education adviser for the NSPCC and a former head teacher, agrees that false accusations are "certainly something that you come across". However, he adds, when a child makes a false accusation, it is often a cry for help.
"It's never straightforward," says Stead, who is also the Anti-Bullying Alliance co-ordinator for Yorkshire and Humberside. "Sometimes it's quite deliberate because a child wants to get someone else into trouble, but sometimes it may be that the child is unhappy because of something else, such as other children not playing with them. Occasionally there's almost a sense of delusion - the child actually believes they are being bullied."
Still, Stead is keen to emphasise that he believes most bullying accusations are true. "The danger is that children who are being bullied are ignored," he adds.
Joanna Ross (not her real name) accepts that it's important not to dismiss children who accuse others of bullying. However, she is also concerned that increased openness about the subject of bullying may be leading to false accusations. She's convinced that more care is needed with young children.
Ross's son Leo, 10, was accused of seriously bullying a younger boy towards the end of last year. The trouble began in the summer term when class teachers discussed bullying and then asked the children to fill in forms saying whether they had been bullied. One child - who was friendly with, and in the same class as, Ross's younger son, Callum - said that he had been bullied, by Leo and two of his friends. This boy, David, said that the older boys had told him to go away and said they didn't want to play with him.
Callum Ross says their teacher told David, then seven, that such behaviour was not bullying. However, the forms were filled in, and Leo and the two other boys were accused.
"Everyone thought it was minor," says Ross. "I spoke to David's father and he said that his son simply wanted to join in with the older boys and then when they didn't want him to, he would poke, prod and kick them. They would respond by cuffing him and telling him to go away. Neither of us was really concerned."
After the summer holidays, there were new, more serious allegations. David accused the boys of punching him, kicking him and kneeing him in the groin. He also said that they had "threatened to bully him more than he'd ever been bullied before".
"It was quite ironic, because one of the boys he had accused had been off sick on the days he specifically said some of these things had happened, so I really thought they couldn't be true," says Ross. "Still, it was awful. The previous term I had told Leo to keep away from David, and he assured me that he had, but as one of the oldest boys in the school, the younger ones want to play with him and his friends. David's father then came to speak to me and said he hadn't been concerned before because it was rough and tumble, but that now he felt it was getting serious. He thought there was no smoke without fire.
"He also said that the bullying had gone on for two years, even though for a lot of that time, David had been coming to my house to play with my younger son. He alleged that three times a week Leo and his friends had been kicking him, punching him and threatening him. He also said that they had been bullying his sister, Ruby, and held her upside down, threatening to drop her on her head.
"I was really worried about the whole thing, but most of it just didn't ring true. It's not simply that I would defend my own son, but the fact that when I started asking around, no one had seen any of this so-called bullying. The children attend a very small school, but none of David's friends knew anything about it, none of the teachers said that David had seemed unhappy or hurt and, despite him accusing Leo of forcing his head into the toilet on more than one occasion, no one had seen him with his hair wet or in tears."
John Stead says that falsely accusing another child of bullying is one way to seek attention.
"There aren't any easy answers when you've been falsely accused," he adds. "The biggest way we protect against false allegations is to look into it as soon as possible."
Ross agrees that, once the allegations had been made, the school had to look into them, and that they did so fairly. At this point Ruby admitted that she had made her story up, but David stuck to his.
"I think he was in a bit of a trap," says Ross. "His father had asked him many times if the accusations were true and he could have got into more trouble if he'd backed down."
However, Ross has a problem with the way the school initially went about encouraging the reports of bullying.
"The school gave out these forms and a lot of children felt they needed to fill them in," she says. "I think the school handled that badly, and I also felt the onus was on me to disprove everything. I thought they should have given my son some defence mechanism."
"Schools need to talk about what is and what isn't bullying and encourage children to talk about it," says Stead. "And I do believe we should be asking children every year how safe the school is. But I'm not sure we should be asking them to specifically name people."
Joanna Ross has some sympathy towards her son's accuser because of his age, and also because she thinks he might well have been unhappy.
"The family had moved a lot and were actually about to leave again to live abroad," she says. "It probably was disconcerting for David. His mother sent me an e-mail saying that they weren't going to pursue the accusations, that she didn't want any bother and that they would leave school a few weeks early. She also said that only the boys would 'know the truth' of what had happened.
"But that view has left my son and his friends under a cloud. If the school had actually believed David, my son would have been expelled. It's left him vulnerable and having learnt a funny lesson, that you can say bad things and get away with it.
"You have to take bullying seriously, but you also have to analyse it. Parents have to accept that children can be mean, but that's not necessarily bullying. There are noticeable symptoms when it comes to a child being bullied, but David wasn't unhappy, crying on the way to school or upset during the school day.
"If a small child picks on a big child they are in a win-win situation. If a big child lashes out, then he'll be accused of bullying. I've told Leo that he must now always walk away."
Wednesday, 10 January 2007
New schools admissions policy - a case of misplaced priorities?
Today the government announced that school admissions procedures are to be changed. But while the intentions are clearly good, what will the reality be?
These days, getting your child into not just the “right” school, but any school, has become incredibly stressful. It sometimes seems as if it’s partly a game – if you are brave enough to stick it out and wait until July or even August, then you may well find that your child does get a place at that popular, coveted, local institution. But if you just can’t bring yourself to leave your child school-less just a month before he or she is supposed to start reception, then you’ll probably accept what you’ve been given (or not given in our case – our daughter got into none of our local schools. Fortunately she is now at a lovely, local faith school).
In our case, the nearest school (and only one within walking distance) is excellent. It’s so excellent, in fact, that it is incredibly hard to get into, and unless you live about 100 yards away, you have little chance. (In fact, we discovered that the people we bought our house from moved up the road so their children could attend this school).
Moving nearer to the right school is exactly the kind of behaviour the government is keen to stop. It’s true that it works against having a good social mix, because house prices near the school become so expensive. But I’m not totally sure that a “school-places lottery” is the answer.
What the government doesn't seem to understand is that most parents want their children to go to a good (not necessarily the best) local school, which is in walking distance. Surely the best thing to do is not expand the catchment area via a lottery, so that other children have to be driven or bussed to school, but to improve the not-so good other local schools, so parents want to send their children there. It seems like a case of misplaced priorities, and also appears to be quite an un-environmentally sound policy, as it works against the most local children (and I, of course, say this as someone who didn't exactly benefit from the current admissions procedures)
In any case, by keeping the siblings rule (which the government has agreed to), it probably won't help that many people anyway. At our local school, there were 24 siblings last year (out of a class of 30!)
These days, getting your child into not just the “right” school, but any school, has become incredibly stressful. It sometimes seems as if it’s partly a game – if you are brave enough to stick it out and wait until July or even August, then you may well find that your child does get a place at that popular, coveted, local institution. But if you just can’t bring yourself to leave your child school-less just a month before he or she is supposed to start reception, then you’ll probably accept what you’ve been given (or not given in our case – our daughter got into none of our local schools. Fortunately she is now at a lovely, local faith school).
In our case, the nearest school (and only one within walking distance) is excellent. It’s so excellent, in fact, that it is incredibly hard to get into, and unless you live about 100 yards away, you have little chance. (In fact, we discovered that the people we bought our house from moved up the road so their children could attend this school).
Moving nearer to the right school is exactly the kind of behaviour the government is keen to stop. It’s true that it works against having a good social mix, because house prices near the school become so expensive. But I’m not totally sure that a “school-places lottery” is the answer.
What the government doesn't seem to understand is that most parents want their children to go to a good (not necessarily the best) local school, which is in walking distance. Surely the best thing to do is not expand the catchment area via a lottery, so that other children have to be driven or bussed to school, but to improve the not-so good other local schools, so parents want to send their children there. It seems like a case of misplaced priorities, and also appears to be quite an un-environmentally sound policy, as it works against the most local children (and I, of course, say this as someone who didn't exactly benefit from the current admissions procedures)
In any case, by keeping the siblings rule (which the government has agreed to), it probably won't help that many people anyway. At our local school, there were 24 siblings last year (out of a class of 30!)
Thursday, 4 January 2007
Happy new year (and an article about a man who says he's Jewish by DNA)
Hello
Good wishes to one and all for 2007.
I have had an article published in the Jewish Chronicle about a man called John Haedrich, who, although he was brought up a Christian, says he is Jewish by DNA.
I am reproducing the text below, but will leave you all to make your own judgements. It's all quite fascinating.
John Haedrich just wants to be accepted for what he says he is – a Jew. But it’s not that simple. For Haedrich claims to be Jewish through his DNA, and his determination to be acknowledged as such is proving more than a little contentious.
“All I want is to be recognised as a Jew,” says Haedrich, who says he will file a claim to recognise his religious status at the High Court of Jerusalem. “I don’t want any money or benefits, but I want legal acceptance. I consider myself Jewish.”
DNA testing has become big business in the States and Haedrich, a 44-year-old nursing home director from California, is one of millions who have sent off swabs to find out who they are, and where they came from. Most, however, do not then decide to change their religion.
“I know that the question ‘who is a Jew?’ is extremely controversial,” he says. “I was brought up Christian, but now I feel Jewish and that is not going to change. I have a willingness to be Jewish, to learn Hebrew, learn the customs and go to Temple.”
There are, however, some serious obstacles ahead. Haedrich faces both scientific problems (it’s questionable whether you can actually determine religion through DNA tests) and halachic ones too.
“Jewish laws are very specific - the only way you can identify someone as Jewish is if their mother is Jewish,” says Rabbi Moshe Elefant, from the Orthodox Union in New York. “That has to be verified from generation to generation.
“This DNA testing is an unacceptable process and in my opinion, it’s also an unnecessary process. If he wants to be part of the Jewish people and act as a Jew, let him convert.”
John Haedrich’s Jewish journey began when he took a trip to Eastern Europe six years ago. His parents and grandparents were German immigrants, and he wanted to visit Germany and from there drive east.
“I couldn’t put my finger on why it was,” he says, “but I was so interested in Jewish things. I visited synagogues in the Czech Republic, stayed in the Jewish quarter in Krakow and was overcome when I went to Auschwitz.”
That trip got Haedrich thinking, but it wasn’t until 2004 that he took the DNA test which, he says, revealed his origins to be Ashkenazi Jewish.
Haedrich has now had numerous DNA tests, both on his Y DNA (which comes down the generations on the father’s side) and his Mitochondrial DNA, (which comes from his mother). He argues that the results show him to be Jewish on both sides (albeit going back centuries), and he is currently trying to track down old German synagogue records to boost his claims.
Haedrich is clearly a man obsessed with his discoveries, even though the science is debatable.
“We’re just not yet able to prove to someone that they’re Jewish, although we might be tip toeing in that direction,” says Megan Smolenyak, a genealogist and co-author of Trace Your Roots with DNA. She explains that if someone was Jewish, certain genetic markers would probably appear, but that this is not foolproof. “It sounds a bit like wishful thinking on his part.”
For Haedrich, it’s not wishful thinking, but clear reality.
“The Israeli authorities would not accept my evidence, and I think that’s ridiculous” he says indignantly. “In the law courts, they accept DNA for medical, legal and forensic reasons. They can’t allow DNA evidence for some things, but not allow it for me.
“I’m now trying to persuade the State of Israel to accept DNA evidence to support an Aliyah application. It’s not just for me, it’s for others as well. This could potentially open the doors to a whole category of people who are otherwise not recognised.
“Imagine if a legal precendent was set. This could help the tens of thousand from Tsarist Russia, who had to conceal their Jewishness during WW2. It would help people who lack paperwork to demonstrate that they are Jews. They are entitled to recognition and so am I. My purpose is to do good, not to alienate or inflame anybody. My intentions are positive.”
Haedrich says that he does not want to “disrespect” the rabbinate and that he has enlisted “experts” to help his cause.
“Some may brand me as a nuisance or crazy person,” he says. “But I’ll settle for being called a trailblazer.”
In his quest to blaze that trail, he has travelled to Israel - where he took out a full page advertisement in the Jerusalem Post - and even set up a new ‘Jewish by DNA’ research institute in LA. It’s already cost him tens of thousands of pounds (he won’t say how much) and he’s not even brought his case to court yet.
Rabbi Dr Michael Shire, acting principal of Leo Baeck College, says he’s not surprised by Haedrich’s pursuit of what he sees as his rightful heritage.
“It’s not unusual for people who find out that they’re Jewish to become completely passionate and obsessed by it,” he say. “It’s something I’ve experienced many times, and often people have had an inkling of it.”
Rabbi Shire has some sympathy for Haedrich’s cause, but not totally.
“On the one hand, as a modern liberal person, I reject a genetic form of Judaism,” he says. “I don’t have a sense that one’s Jewish identity is determined genetically. Anyone can become Jewish – they can choose to become Jewish.”
But he adds that under reform Judaism, Haedrich would be expected to convert, and that’s not something the Californian is prepared to do.
“If I am a Jew, why should I convert?” he asks. “I’d rather fight this for years than convert for the principle of it.”
Haedrich is clearly in this for the long haul. He celebrated his first Passover this year, and also his first Yom Kippur (he didn’t fast, but says he “may” next year.). His next goal is to prepare for an adult bar mitzvah.
“It’s nice to be Jewish by DNA but it’s more important that you should be Jewish by choice,” he says. “I’m Jewish by choice and willing to learn and embrace it. I’ve got no time frame. How long has the Jewish religion been around?
“I’ve had frustrations and disappointments over this, and I’m willing to do everything but convert. If someone can conclusively prove that I’m not Jewish, then I’ll convert.”
Good wishes to one and all for 2007.
I have had an article published in the Jewish Chronicle about a man called John Haedrich, who, although he was brought up a Christian, says he is Jewish by DNA.
I am reproducing the text below, but will leave you all to make your own judgements. It's all quite fascinating.
John Haedrich just wants to be accepted for what he says he is – a Jew. But it’s not that simple. For Haedrich claims to be Jewish through his DNA, and his determination to be acknowledged as such is proving more than a little contentious.
“All I want is to be recognised as a Jew,” says Haedrich, who says he will file a claim to recognise his religious status at the High Court of Jerusalem. “I don’t want any money or benefits, but I want legal acceptance. I consider myself Jewish.”
DNA testing has become big business in the States and Haedrich, a 44-year-old nursing home director from California, is one of millions who have sent off swabs to find out who they are, and where they came from. Most, however, do not then decide to change their religion.
“I know that the question ‘who is a Jew?’ is extremely controversial,” he says. “I was brought up Christian, but now I feel Jewish and that is not going to change. I have a willingness to be Jewish, to learn Hebrew, learn the customs and go to Temple.”
There are, however, some serious obstacles ahead. Haedrich faces both scientific problems (it’s questionable whether you can actually determine religion through DNA tests) and halachic ones too.
“Jewish laws are very specific - the only way you can identify someone as Jewish is if their mother is Jewish,” says Rabbi Moshe Elefant, from the Orthodox Union in New York. “That has to be verified from generation to generation.
“This DNA testing is an unacceptable process and in my opinion, it’s also an unnecessary process. If he wants to be part of the Jewish people and act as a Jew, let him convert.”
John Haedrich’s Jewish journey began when he took a trip to Eastern Europe six years ago. His parents and grandparents were German immigrants, and he wanted to visit Germany and from there drive east.
“I couldn’t put my finger on why it was,” he says, “but I was so interested in Jewish things. I visited synagogues in the Czech Republic, stayed in the Jewish quarter in Krakow and was overcome when I went to Auschwitz.”
That trip got Haedrich thinking, but it wasn’t until 2004 that he took the DNA test which, he says, revealed his origins to be Ashkenazi Jewish.
Haedrich has now had numerous DNA tests, both on his Y DNA (which comes down the generations on the father’s side) and his Mitochondrial DNA, (which comes from his mother). He argues that the results show him to be Jewish on both sides (albeit going back centuries), and he is currently trying to track down old German synagogue records to boost his claims.
Haedrich is clearly a man obsessed with his discoveries, even though the science is debatable.
“We’re just not yet able to prove to someone that they’re Jewish, although we might be tip toeing in that direction,” says Megan Smolenyak, a genealogist and co-author of Trace Your Roots with DNA. She explains that if someone was Jewish, certain genetic markers would probably appear, but that this is not foolproof. “It sounds a bit like wishful thinking on his part.”
For Haedrich, it’s not wishful thinking, but clear reality.
“The Israeli authorities would not accept my evidence, and I think that’s ridiculous” he says indignantly. “In the law courts, they accept DNA for medical, legal and forensic reasons. They can’t allow DNA evidence for some things, but not allow it for me.
“I’m now trying to persuade the State of Israel to accept DNA evidence to support an Aliyah application. It’s not just for me, it’s for others as well. This could potentially open the doors to a whole category of people who are otherwise not recognised.
“Imagine if a legal precendent was set. This could help the tens of thousand from Tsarist Russia, who had to conceal their Jewishness during WW2. It would help people who lack paperwork to demonstrate that they are Jews. They are entitled to recognition and so am I. My purpose is to do good, not to alienate or inflame anybody. My intentions are positive.”
Haedrich says that he does not want to “disrespect” the rabbinate and that he has enlisted “experts” to help his cause.
“Some may brand me as a nuisance or crazy person,” he says. “But I’ll settle for being called a trailblazer.”
In his quest to blaze that trail, he has travelled to Israel - where he took out a full page advertisement in the Jerusalem Post - and even set up a new ‘Jewish by DNA’ research institute in LA. It’s already cost him tens of thousands of pounds (he won’t say how much) and he’s not even brought his case to court yet.
Rabbi Dr Michael Shire, acting principal of Leo Baeck College, says he’s not surprised by Haedrich’s pursuit of what he sees as his rightful heritage.
“It’s not unusual for people who find out that they’re Jewish to become completely passionate and obsessed by it,” he say. “It’s something I’ve experienced many times, and often people have had an inkling of it.”
Rabbi Shire has some sympathy for Haedrich’s cause, but not totally.
“On the one hand, as a modern liberal person, I reject a genetic form of Judaism,” he says. “I don’t have a sense that one’s Jewish identity is determined genetically. Anyone can become Jewish – they can choose to become Jewish.”
But he adds that under reform Judaism, Haedrich would be expected to convert, and that’s not something the Californian is prepared to do.
“If I am a Jew, why should I convert?” he asks. “I’d rather fight this for years than convert for the principle of it.”
Haedrich is clearly in this for the long haul. He celebrated his first Passover this year, and also his first Yom Kippur (he didn’t fast, but says he “may” next year.). His next goal is to prepare for an adult bar mitzvah.
“It’s nice to be Jewish by DNA but it’s more important that you should be Jewish by choice,” he says. “I’m Jewish by choice and willing to learn and embrace it. I’ve got no time frame. How long has the Jewish religion been around?
“I’ve had frustrations and disappointments over this, and I’m willing to do everything but convert. If someone can conclusively prove that I’m not Jewish, then I’ll convert.”
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