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TX: 02.02.04 – NEW HEALTH CHECK CARD LAUNCHED FOR PEOPLE WITH EATING DISORDERS

PRESENTER: DIANA MADILL

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.


MADILL
Now within the last hour a new health check card for people with eating disorders has been launched and the idea is for patients to have at their fingertips at list of what treatment they should expect the NHS to provide. The list has been drawn up from the guidelines announced last week by NICE - the National Institute for Clinical Excellence. Earlier the chief executive of the Eating Disorders Association - Susan Ringwood - outlined to me what patients are entitled to.

RINGWOOD
The guidelines describe the treatment that people should expect to get for their eating disorders. So it particularly highlights that they should be treated by an experienced specialist, that their family should be involved in their care, that they should get some really good information about their eating disorder and their treatment and also the role of self-help.

MADILL
Is it anything more than wishful thinking because a patient can't force the NHS to provide all this can it?

RINGWOOD
Well as I say it does set the standard and there are implications for how quickly and evenly this will be implemented across the UK. We last looked at the state provision in the year 2000 and found it was very patchy - some places are good but others there simply isn't experienced specialist help available. Our concern is how quickly will these guidelines be implemented across the UK.

MADILL
Do you expect the card to be able to turn round services for patients?

RINGWOOD
We see this as a way that we can help measure what's out there now in a subjective way - people will tell us what they think they've given or received - we're going to use this to publish those findings and to campaign for those services to be made available more widely.

MADILL
Is it a sanction then?

RINGWOOD
I don't believe so, I believe it's a way of also highlighting where there is good practice because from this we will find out where the good things are happening, so we can highlight that as well.

MADILL
Susan Ringwood. Well joining us now is Ann Cox, who used to have an eating disorder and now counsels others, and Jill Todd, who's a clinical nurse leader in the eating disorders unit at the BethlehemRoyalHospital, which is part of the Maudsley.

Ann Cox, in your experience, how many people find their treatment falls well short of these guidelines?

COX
I don't think I've met anybody who says that they've been happy with their treatment. But I would like to say one thing and that is people perhaps don't want to recover, there's a lot of ambivalence with regard eating disorders. For example when I was ill I wanted to become well but I wanted to stay thin. So I think very few people are happy with the help because they have to confront some things that they don't want. I would disagree and say the help, to a degree, help is out there but we have to use it because we have to want to recover.

MADILL
What do you make of the card then?

COX
I think it's important to say that both the NICE guidelines last week and the card are a positive move because they bring out into the public arena eating disorders and the treatment of. I think it's a progressive step forward if only because it is going to show a lot of holes. For example, who is going to complete that card? Are we really going to get consistency in completion of the card and are we going to get people who really want to recover completing the card because in recovery there's a lot of things that people want but there's a lot of things that people need and they don't necessarily like to do or want what they need?

MADILL
Maybe at the same time as the NHS offering the guidelines what you should also have is the patient promising to do their best alongside.

COX
I think you do need some sort of contractual agreement - yes. And I also wonder whether we are here talking about a full recovery or are we talking about a better adapted anorexic bulimic, in other words somebody who manages their life better but perhaps doesn't go for a full recovery as did I.

MADILL
Jill Todd you deal with people at the sharp end here, how much of a priority are eating disorders, in treatment terms, as opposed to say schizophrenia or other mental health illnesses?

TODD
Well eating disorder sufferers don't harm anyone else, they have the highest mortality rate of any mental illness and they die but that doesn't affect anyone else so they're not given a high priority in the press. Just to take up Ann Cox's point, I think the NICE guidelines are excellent inasmuch as they do highlight these deficits and that patients, if they could get GPs, for instance, to make an earlier diagnosis, if they could be treated nearer to home, if they could have the involvement of their families or if young people could be treated in age appropriate settings and if people could receive treatment from a specialist with experience of eating disorders they may then be able to change their minds, work with a mental illness. But none of these things are really happening around the country at all at the moment.

MADILL
Is that because, as Ann Cox points out, sometimes the problem lies with the patient rather than the NHS in providing the resources?

TODD
I don't think that's an excuse for the NHS not to provide the resources.

MADILL
Well what is the shortfall for the NHS as regards comparing now with the wishful thinking that we would like to have?

TODD
Well in London we're quite well provided but the rest of the country there are hardly any eating disorder units, I should think there are at least a hundred beds shortfall in the NHS and that's just picking a figure out of the air. A lot of NHS money is spent in the private sector because health authorities do not provide the services and they only provide them when they become critical and therefore they have to send people who are nearly dead into the private sector and have to pay out vast amounts of money because of the poor provision in their area.

MADILL
Now the intention here is to improve the healthcare of people with eating disorders but what I would imagine it takes as well is knowing how to use your clout to get the service provided. Do you think the patient or the GP will be able to do that and to demand what is being offered and what they're entitled to?

TODD
Well the patient does have more clout, the patient voice, the government's modernisation plan, is for patients to have a voice in their service, a choice, accessibility and GPs certainly now have a voice because they're part of the big primary care trusts and they are actually commissioning mental health services, so they can definitely make a difference if they wanted to.

MADILL
Do you think it will work in practice then Ann Cox?

COX
I'm not sure, I'm really not because I think it's a cosmetic - sticking a plaster here. Early diagnosis puzzles me, if you look at eating disorders and addiction, they are an addiction, they are - the behaviour is an addictive way of coping with difficulties in our life. Nobody wants to let go that addiction, so early diagnosis, unless somebody comes and owns up that they have an eating disorder I don't understand early diagnosis. I think there are - I think it needs better coordination as well, I mean I was lucky when I finally decided I wanted to recover, the facilities were there for me, however, they weren't coordinated, so when I expressed to the dietician that I was scared of the food that I was eating she said that wasn't her problem. So when I spoke about my feelings to the therapist he said he didn't deal with food, that was the dieticians. I'm not - in theory this is a perfect idea, I worry about the reality …

MADILL
Whether the joined up thinking works in practice, is the bottom line?

COX
Yes, yes.

MADILL
Do you think it might then Jill?

TODD
I think definitely joined up thinking would work in practice. These are all the things - the people on the NICE guidelines are professionals, they know what's missing, they represented us - there were carers, and service users on the NICE guidelines and it's a distillation - these recommendations - of what all those people said. And definitely joined up thinking makes sense.

MADILL
Jill Todd, Ann Cox, thank you both.




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