Published: 01/04/2004, Volume II4, No. 5899 Page 28 29
Eating disorders have the highest mortality rate of any psychiatric condition, but dedicated services for their treatment are still seriously lacking.New NICE guidelines hope to address this, writes Ann Dix
It took the death of a local anorexic patient and pressure from a dissatisfied group of carers in Cornwall to establish the county's first eating disorder service. Other parts of the country have been less fortunate.
A UK survey by the Royal College of Psychiatrists in 2001 revealed that while the number of NHS units for eating disorders had nearly doubled since an earlier survey in 1991, half of health authorities still had no specialist local eating disorder service.
1The picture for children and adolescents was even bleaker, with four regions - containing 25 per cent of the population - having no specialist services.
There has been little improvement since then, according to the Eating Disorders Association, which says that services are mostly concentrated in the South East. 'Wales has no eating disorder services at all, ' says EDA spokesperson Steve Bloomfield.
Some of the shortfall is made up by referring patients outside the area or the NHS contracting with private sector clinics. 'But we know of well-established, well-set up private services in areas with no NHS provision that receive no [NHS] referrals.'
This means that many patients end up on 'inappropriate treatment regimes in inappropriate general mental health facilities', says Mr Bloomfield.
Alternatively, they have to travel long distances from home for specialist treatment.
But the situation may be set to improve with the publication in January of new evidence-based guidelines from the National Institute for Clinical Excellence (see box, top).
2Developed by the National Collaborating Centre for Mental Health, the guidelines require clinicians and commissioners to review their existing practice in the identification, treatment and management of eating disorders.
Eating disorders commonly develop in adolescence and have the highest mortality rate of any psychiatric condition (see box, below). Although with appropriate treatment most people can recover, it takes an average of six years, with serious long-term social and physical consequences. Depression is common, occasionally leading to suicide. Long-term physical problems can include kidney and heart damage, osteoporosis and impaired fertility.
The NICE guidelines rank aspects of service provision, physical management and treatment according to evidence of their effectiveness, and make a number of key recommendations. They emphasise the importance of early intervention and local provision and recognise the specific needs of adolescents and young people.
EDA welcomes the guidelines as 'a major step forward'.Mr Bloomfield says they will be particularly useful in stimulating better diagnosis and referrals from GPs. But he is concerned about the funding and staffing implications.
Treatment of eating disorders needs to be given by multidisciplinary teams, with skills acquired in medical, psychiatric and psychotherapeutic training.
But specialists in eating disorders are in short supply, particularly nurses and psychiatrists. The Royal College of Psychiatrists has estimated that the number of specialist consultants in the UK needs to more than double, to around 40 whole-time equivalents, for the effective treatment of adults with eating disorders.
Dr Paul Robinson, until recently chair of the Royal College of Psychiatrists' eating disorders special interest group, says a major problem is that 'eating disorders are currently regarded as part of general psychiatry'.
'We are trying to encourage the [royal college] to recognise it as a specialty and have developed guidelines recommending one year's training in the appropriate eating disorder service, ' he says.
Professor Glenn Waller, clinical lead for one of the few eating disorder outpatient units in the country, part of St George's Healthcare trust's eating disorder service in London, says there needs to be 'more specialist treatment delivered by non-specialists'.
'I am a great believer in making myself redundant, ' he says. 'For example, there is evidence that some self-help work administered by GPs can be helpful... we need to be delivering better care to the patient as early as possible.'
He expects that 'over the next couple of years, the NICE guidelines will have an impact on commissioning'.
On the one hand, 'they point out how little we know' about the effectiveness of existing treatments, but on the other, 'they make some very straightforward but functionally useful recommendations'.
But he admits: 'From my point of view, I look at them and think, 'Oh help'. In his first three years at St George's, referral rates more than tripled, he says.
'NICE recommends that the bulk of anorexia cases are seen as outpatients. A lot of referrers are thinking the same thing.'
Leicester University senior lecturer in psychiatry Dr Bob Palmer, who was on the NICE guidelines development group, believes 'an outpatient service with beds and a day programme' is the way forward.
This is the model in Leicester, for which Dr Palmer is clinical lead, which he says works on the premise of no more than three beds per million population - half that recommended by the Royal College of Psychiatrists.
'Inpatients can sometimes be the tail that wags the dog, ' he says. But 'stand-alone inpatient units should become an anachronism'.
Professor Simon Gowers, who chaired the guidelines development group, says service models will vary according to local circumstances. Professor Gowers, who is clinical lead for Cheshire and Merseyside eating disorders service for adolescents, adds that the NICE guidelines have 'quite extensive funding implications'.
Problems in recruiting specialist staff meant that when Cornwall and the Scilly Isles set up its first eating disorder service about a year and a half ago, it had to train its own.
Chris Prestwood moved from St George's in London to take up a post as clinical lead for this community service, which integrates closely with local child and family services and adult mental health teams.
Funding was key, he says. Unlike many new services, levels have matched the Royal College of Psychiatrists' recommendations of around£1 per person in the population served.
But Mr Prestwood says he underestimated the level of ignorance of eating disorders outside the capital. 'I still get consultant psychiatrists saying eating disorders are not an illness and we shouldn't be treating them, ' he alleges.He has also been surprised at the level of demand: 'It was way over what we would have expected if we looked at national figures, ' he insists.
Mr Prestwood sees integrated community services as the way ahead. 'I do not think that eating disorders should be seen as something exotic and specialist. If you set it up as a completely separate service, the average healthcare worker will have no experience.'
He has found that working with groups such as young people's charities can equip these organisations to deal with 'mild to moderate cases extremely well, even without GP help'.
In Cornwall, a population of 500,000 was not enough to justify an inpatient unit.However, a new crosscounty collaboration between commissioners and providers in the South West Peninsula strategic health authority may in 18 months give Cornwall and Devon their own 12-bed inpatient unit.
Devon Partnership trust is leading on the project, which aims to provide a comprehensive programme of treatment, together with strong community support.
Director of mental health services for north and midDevon Liz Davenport says the main impetus had come from the discovery that eating disorders were 'one of the key and most expensive of our out-of-area spend'. Some of this money was being redirected into developing the new inpatient service and cross-county collaboration would leave enough resources to develop community services alongside.
This type of collaborative model is favoured by Professor Hubert Lacey, director of St George's eating disorder service, the largest and most comprehensive service in the country. Outreach and the use of telemedicine will also play a part, he says. For example, St George's sends two of its nurses to Northern Ireland to help run an eating disorder outpatients' service. They help assess patients and train staff, with patients referred to St George's where necessary.
These new models of care 'should cost less than is currently being spent'when you consider the cost of the private sector, he says.
The NICE guidelines in brief The National Institute for Clinical Excellence guidelines advise on the identification, treatment and management of anorexia nervosa, bulimia nervosa and atypical eating disorders (including binge-eating disorder) in people aged eight upwards.
Key recommendations include: Effective assessment, including co-ordination of care, involvement of patients and their carers, providing good information, moral support and early help.
Involving family members in the treatment of young people.
Managing most adults with anorexia nervosa as outpatients with psychological treatment provided by professionals experienced in eating disorders.
Offering most adults with bulimia nervosa and binge eating disorder cognitive behaviour therapy for bulimia nervosa (CBT-BN) and/or evidence-based self-help programmes and antidepressant drugs.
Offering adolescents with bulimia nervosa CBT-BN adapted to their needs and including the family as appropriate.
Number munching: the stats
Eating disorders are a serious mental illness, with the highest mortality rate of any psychiatric disorder. Information on incidence and prevalence is poor. In 1992, the Royal College of Psychiatrists estimated that around 60,000 people were receiving treatment for anorexia nervosa or bulimia nervosa, but in 2000 the Eating Disorders Association put the true number at nearer 90,000, with many more undiagnosed.
According to National Institute for Clinical Excellence, one in 250 women and one in 2,000 men experience anorexia nervosa, usually in adolescence or young adulthood, and about five times that number suffer from bulimia.Other related eating disorders ('eating disorders not otherwise specified'or 'atypical eating disorders') may be more common still, though many will not receive treatment.
The incidence of anorexia nervosa appears to have remained fairly constant, although cases of bulimia nervosa may be slightly increasing.But some experts claim that demand for services is rising because of increased awareness and improved diagnosis by GPs.A number of London units are also reporting an increase in severity of cases.
Treatment is expensive.EDA estimates for 2001-02 put the direct cost of a basic 12 weeks of specialist inpatient NHS treatment for one patient at approximately£25,000, rising to as much as£45,000 in the private sector.
1 The Royal College of Psychiatrists. Eating disorders in the UK: policies for service development and training. 2001. Council report 87. www. rcpsych. ac. uk college/sig/eatdis. htm
2 NICE. Eating disorders: core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related eating disorders. www. nice. org. uk
3 Eating Disorder Association.The hidden costs of eating disorders.2003.
www. edauk. com Key points
Eating disorders have the highest mortality rate of any psychiatric condition, yet a 2001 study showed that half of health authorities had no specialist eating disorder service.
This postcode lottery of provision means many people end up without effective treatment or have to travel long distances.
New NICE guidelines set the standard for effective treatment for eating disorders, but will significant funding and training implications.