A.N.T.S.
Adequate Nationwide Treatment for Sufferers
of Eating Disorders
ANTS - The Prelude - March 2002 to March 2003
My wife, Debbie, has suffered from anorexia for some eight to fourteen years. Exactly when this happened seems to be a matter of conjecture; it varies depending on whom you talk to! What I do know are the consequences that are suffered by the person and their family. The isolation; the trauma of trying to understand what is happening and find the answers you need to be able to combat the eating disorder; the frustration, anger and sometimes sheer despair, at the lack of adequate, effective treatment and the seeming indifference of the NHS and government to your plight; the strain upon family relationships and the gradual breakdown this brings; the changes in the sufferer and how that effects them; their desperate attempts to break free of their eating disorder and regain their life only to be failed by the NHS at every move. I could go on, the list seems endless but if you suffer from, or care for an eating disorder sufferer; you know only too well what I am talking about.
March 2002
On 28th March 2002 Debbie and I attended a funeral. At my age that is not unusual but the person who had died was only 21 years old. Anorexia had claimed yet another victim. The church was packed and, looking round, I saw a great many people that I had met over the last few years. Regardless of age, status, ethnicity or any other factor, those people all had one thing in common; they all had an eating disorder. Yes, there were lots of other people there too, but I had never seen so many sufferers in one place. I also thought of those who, for a myriad of reasons, were NOT there. It was then that I realised something - if I was to stand any chance of changing things for people who suffer from an eating disorder I could not do it on my own.
April 2002
Debbie was admitted to hospital for the fourth (I think) time. We were all near breaking point at the thought of repeating the same cycle of in-patient treatment, followed by maybe day-patient treatment and then care in the community. None of which addresses the underlying causes of the eating disorder but merely the surface problem, which enables the eating disorder to gain a further stranglehold on it’s victim and so we start the cycle all over again! This time we had to find the support Debbie and other eating disorder sufferers need to break the cycle and become free. It’s not easy, it’s not quick and it takes intensive support from qualified persons with the patience of a saint to achieve the goal, but we are ALL entitled to a decent life. Aren’t we?
May to June 2002
The family decided that we would not stand by and just let things happen to us any more, so decided to wage a publicity campaign using the local newspapers, radio and television to raise awareness of people suffering from eating disorders and thus enhance the available treatment.
Considering the fact that Debbie was an in-patient at this point, it was a measure of her desperation, commitment to recovery and downright courage, that she agreed to be interviewed by HTV West for the Six O’Clock News and by Juliet Auty, Editor of the Weston and Worle News, for a follow-up article. During May and June we were regularly appearing in the newspapers. I also took part in a phone interview on Radio Bristol with Brian Cotter, MP for Weston-super-Mare, who has worked on our behalf for many years for which I am deeply grateful.
We would like to record our gratitude to Juliet Auty, Editor of the Weston and Worle News; Kelly at the Weston Mercury; Nick Pearson of the Bristol Evening Post; Dominic Vitalis of HTV West; Keith Warmington of Radio Bristol and their respective organisations. Not just for their assistance, which was obviously crucial, but for the sensitive, caring and professional way in which they carried out their interviews, as well as their accurate reporting.
The provision of services for this area is the responsibility of the Avon and Wiltshire Mental Health Partnership NHS Trust and they were also interviewed.
Roger Pedley, Chief Executive for the Trust, stated that he recognised there were gaps but the Trust only had limited resources. He said, “In some areas of the Trust we have improved special services for people with eating disorders. But we need to increase this service to cover the whole of the Trust and improve those we have already got.” (B.E.P 14 May 2002).
Spokesperson for the Trust, Anne Page, said: “Within the Avon part of the Trust, covering Bristol, Bath and North East Somerset, North Somerset and South Gloucestershire, there is funding for a specialist eating disorder service costing £500,000 per annum. In contrast, in Wiltshire there is no special funding for eating disorders. All areas of mental health need more investment, including eating disorders.” (W&W News 16 May 2002).
On 18th June our MP, Brian Cotter, tabled a motion in Parliament.
| EDM 1460 | TREATMENT PROVISION FOR EATING DISORDERS | 18.06.02 |
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To support Brian Cotter’s EDM we wrote to all MP’s, urging them to sign in support. We received many messages of support, even from those who were unable to sign because of their position in government. Our thanks to the person who invented self-seal envelopes!
When the Early Day Motion was closed it had attracted 64 signatures:
We are grateful to all those who signed and gave their support, especially to Bob Spink, the only Conservative MP to do so!
Following all the publicity we had a review of what had been achieved. We concluded that, apart from raising the profile of eating disorder sufferers locally we had not succeeded in changing one solitary thing. As the reason for the absence of proper facilities or treatment was said to be the lack of finance, it seemed unlikely that our efforts to that point would bear fruit! What we did know was that there is an enormous problem with eating disorders in this area. After more than thirty sufferers or carers/friends/family had contacted me I had lost count!
There was only one possible answer - we would have to go national so that we could force changes in the way eating disorders are funded. You can tell we had not done this kind of thing before, can’t you? How naïve! However, “Who dares wins!” to steal a motto.
In June 2002, we wrote to Tony Blair, George Brown and Alan Milburn. After all, they are the people who have been elected to govern the country, have the power to make the changes and control the expenditure of our money, collected as taxes. If they can’t do something then who can? We received the standard responses from the offices of Tony Blair and Alan Milburn. All telling us what marvellous documents they had published to “improve” the situation and how they had allocated extra money to help things get better “faster”. All of which we knew but all of which had not made one iota of difference at the service end. I wonder where all that money went? Assuming it was paid over that is! I am still waiting for some sort of response from George Brown at the Treasury! I’m sure they do care really!
July to September 2002
I think I spoke to someone in just about every national TV, radio and newspaper office in the country. It is surprising the different reactions you get; some are very sympathetic but can’t give space for the story just now, others really do care but are unable to win the support of “higher ups” and then there are those who just don’t give a damn, mainly male I have to say.
Eventually I spoke to a young lady at the Sunday Express offices. Her name is Anna Wright and she was very interested in what we had to say to her. A meeting was arranged and we all met up at home. Some few weeks after our meeting, on 8th September 2002, Anna's report was published in the Review section of the Sunday Express. We are very grateful to Anna and the Sunday Express for their help and support. Without it I’m not sure that ANTS would have been born.
The report also included my email address and I received numerous messages from all over the country and even one from Canada. They all had a very similar tale to tell. Regardless of whether the sufferer was young or more mature, throughout the length and breadth of the UK, the facilities and level of treatment that is needed to help sufferers of eating disorders or their carers and families is inadequate. Some of the stories are horrendous; all of them are tragic and heartbreaking. All the more so when you know it is preventable.
There was one email from someone, who probably lives in the South of the UK, who said she had received fantastic help and was now cured. From GP to dietician to psychiatrist, all had been provided quickly, efficiently and effectively. It just goes to prove that it can be done if there is the will.
October 2002
As a result of Anna’s report in the Sunday Express I received a call from Deirdre Leitch, a researcher for the Gary Robertson Programme with BBC Radio Scotland. I took part in an interview for the programme, recorded from Radio Bristol’s studio. We are grateful to all concerned for their support.
November to December 2002
As a result of Nick Pearson’s front-page article in the Bristol Evening Post earlier in the year, I had received a call from a researcher at Granada TV about a possible programme. As we had heard nothing since I had forgotten about it. They made contact again for a recording for The Trisha Show about anorexia sufferers. In early December I was invited to be part of the audience. I spoke briefly about anorexia and older women.
Sadly, all this effort did not have the desired effect; that is, to increase the treatment to an adequate, effective level, effect "cures" and prevent needless deaths. We were no further forwards than when we started.
February to March 2003
Christmas came and went but in the New Year there was National Eating Disorders Week. I work at Weston College and, together with the Student Union and Weston College Sixth Form, we organised displays, talks at the Sixth Form and sold eating disorder awareness ribbons. The week was supported by Brian Cotter, our MP, who sent Alex Gale from his office to meet the public and listen to their concerns about eating disorders.
Debbie and I also attended the Somerset Eating Disorder Association’s Conference at Wellington. You can find SEDA at http://web.ukonline.co.uk/seda/index.htm.
It was at this point I realised that we would have to take the bull by the horns and actually make the changes happen ourselves. The proposal on the ANTS Action page was written at this time and submitted to Brian Cotter.
Being more realistic than some twelve months earlier, I expected a delay and realised that it might, even probably would, be necessary to raise some funds to support the proposal. I found a website that looked interesting and put a message out. You can find the website at http://www.healthvoice-uk.net/default.asp and the message under “Eating Disorders”, in the All Members Forum. The response was fantastic! The rest is history as it were. With the help and encouragement from the forum, the people they put me in contact with and from SEDA themselves, we have managed to get ANTS off the ground both locally and nationally and even have our own website.
I do not intend that ANTS should reinvent the wheel. By that I mean that ANTS will not have lots of information or explanations about eating disorders on the website. We will direct people via links to other sites where a vast array of information and details already exist.
ANTS are a group primarily engaged in actively campaigning to make the changes that are needed happen.
Locally, that will involve raising funds to access services from others, who have the experience and infrastructure to be effective and efficient that we lack. Raising awareness and coercing the help of anyone who can facilitate change locally.
Nationally, we will endeavour to find others who believe as we do, and in partnership, whilst retaining our individual independence, combine at a national level to be more efficient and effective in our campaigning. Thus bringing about the changes needed to secure adequate, effective treatment for eating disorder sufferers throughout the UK.
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"This website is a vital tool
for those who may feel lost or alone, carers and sufferers alike,
who seek support and information that may,
put simply, save the life of someone they love."
Brian Cotter MP, Liberal Democrat Member of Parliament for Weston-super-Mare 1997-2005.
