Caragh Sanders-Wright, an eating disorder specialist dietitian explores the attitudes, practices and changes needed to tackle this complicated illness.
Eating disorders (ED) regularly come up in the media and whether it is talking about models on the catwalk or poor funding in local communities, there never seems to be a positive note. Profiled ED sufferers are often white middle class females, which can leave many sufferers outside of those groups feeling marginalised, alongside having to cope with their illness.1(See references below)
EDs are complicated and misunderstood. During a two year period working in the acute setting, I never encountered any suggestion that sufferers of neurological, head and neck cancers or people in post-ITU recovery were there 'by choice’, and were treated with according compassion based on their perceived helplessness as they did not ‘bring the condition on themselves’. I felt that there was far less sympathy for ED patients – possibly due to lack of time, funding or understanding.
About 40 patients per million of the population suffer from a chronic ED. Patients may never recover from their disorder and require repeated admissions to medical wards to maintain safety, quality of life and personal recovery.2,3 These patients are often seen as ‘bed-blockers’ who just need to eat and go home (the media often add to this myth). In reality, I have yet to come across an ED patient that chooses to have their disorder or who does not wish to be well.
Resource-heavy traditional treatment
There is, however, a reason for this negative perception of ED sufferers – ED inpatients use resources at a far greater rate than the rest of the patient population and are more likely to stay in hospital for a longer period of time. In the 12 months to October 2013, hospitals dealt with 2,560 ED admissions. Only 21% of patients were admitted and discharged on the same day in comparison with 63% of all other patients. Further, 6% of ED patients stayed in hospital for longer than six months compared to only 0.03% of all other admissions. This is largely due to the lack of a clear care pathway for ED patients.4
Unsurprisingly, this resource intensity is expensive. An estimated 1.5 million EU citizens suffer from Anorexia Nervosa or Bulimia Nervosa, costing an estimated of €0.8 billion per annum. 2,3 However, this figure severely underestimates the true costs of ED as the cost of outpatient resources, lost productivity of families and reduced life-length costs are excluded.
Maximising the quality of life for patients requires careful joint working between primary care, community health, social and specialist mental health services. Susan Ringwood Chief Executive of the charity Beating Eating Disorders (Beat) explains that EDs have the highest mortality rate of all mental health disorders. Individuals must have to access the right specialist treatment as early as possible to prevent young lives from being disrupted through loss of education, hindered career prospects and premature death. She points to clear evidence that healthcare costs would be better spent earlier to stop the effects on sufferers, their family and the community.1 All of this against a backdrop where only 54% of ED teams have a dietitian!5
Innovative care pathway evolves
This ethos led to a specialist ED dietitian role being created in Plymouth during 2013 when two of Plymouth’s leading (but quite separate) ED organisations came together to offer a combined service. Eating Disorder Service (EDS) is a charity that offers patients within Devon access to therapy and a dietitian, whilst Severe Eating Disorder Consultation Assessment Service (SEDCAS) is focussed solely on the city of Plymouth and is part of the NHS’s Plymouth Community Healthcare Trust. The role required a dietitian to be split between EDS and SEDCAS to offer a comprehensive support between the two services.
I was delighted to be given this new post and although there was no funding available for my salary, following a successful pilot by EDS, a business case showed that it could self-fund through savings in inpatient admissions and the lengths-of-stay where an admission was unavoidable. SEDCAS and EDS jointly developed the care pathway to hold and support Plymouth-based ED patients avoiding an out-of-area inpatient admission.
For chronic patients of low weight, EDS have created a bespoke approach for small groups known as PIPS (Personalised Intensive Programme). The morning sessions are purely dietetic. Once patients have checked in they have morning snacks which they bring from home and which have been agreed on their meal plan. The rest of the morning is meal planning and often covers a particular topic like the health implications of purging, laxative abuse or starvation. Meal planning is not what you would expect to see in general dietetic practice – these are community patients who have to shop on their own and manage to eat meals, so it is important to put something on the meal plan that they can follow. The main part of my role is building relationships with patients, offering one-on-one dietetic care like visiting a supermarket, educating on what their body needs to survive or simply having a coffee to help develop confidence in living a ‘normal’ life.
Tricks of the trade
ED patients are often driven by their ED to falsify weights or avoid conversations on the compensatory behaviour that they exhibit. Being honest with patients that you trust the person but not the illness sets clear boundaries of what is expected.6 I introduced the Mid Upper Arm Circumference (MUAC) measurement to help patients understand that (for example) water loading will not hide weight loss. By taking a MUAC of a patient who visibly had lost weight but whose measured weight remained the same, we determined that he had lost 2cm in muscle mass.7 This information caused the patient to agree to a true weigh-in and showed a 3kg weight loss.
Holistic approach – living with your ED
The care pathway is not solely about diet. The teams I work with include therapists and clinical consultants. We offer staff full support and training to make this approach joined-up. It means patients are near to home and can keep links with communities. This way we can help them gradually rebuild their lives with a realistic goal of learning to live alongside their ED rather than expecting a cure. Should a patient become medically unwell they can be sent to the main hospital for medical rescue such as refeeding.
Support networks for ED specialists
Most ED dietitians work independently and it is not a common specialism and ED literature from a dietetic perspective is limited. Recently I had a patient with a 30-year history of inpatient admissions because they found life at home lonely and hence avoided weight gain to ensure admission to the psychiatric ward. I believed that nasogastric (NG) feeding might be a good approach but there is little literature to help with the ethics of this. I turned to a national group of ED dietitians for support and evidence when making decisions that don't have evidence-based literature. Further support came from the South West Eating Disorder Dietitians network. Being able to post a question to the groups and receive 20 replies on similar dilemmas was a great way to support my theory.
I have been in post for eighteen months and we have made a lot of progress. The twice-per-week PIP group has allowed chronic ED patients to be held safely in the community, reaping the benefits of a normal life and family support whilst avoiding the costs of in-patient treatment (weekly inpatient stay costs £4,500 versus PIP cost of £300 a day covering up to five patients). The next step is to set up a day service where we offer a daily mixture of therapy, dietetic input, education and cooking practice which will take ED care in Plymouth to new levels.
1. Beat: beating eating disorders. Staggering cost of eating disorders. www.b-eat.co.uk/about-beat/media-centre/press-releases/staggering-cost-of-eating-disorders/ (accessed 14 Sept 2014)
2. Gustavsson A, et al. Cost of disorders of the brain in Europe 2010. European Neuro psychopharmacol. 2011;21:718-79.
3. Wittchen HU, et al. The size and burden of mental disorders and other disorders of the brain in Europe 2010. European Neuro psychopharmacol. 2011;21:655-79
4. Health and Social care information centre. Hospital admissions up by 8 per cent in a year. www.hscic.gov.uk/article/3880/Eating-disorders-Hospital-admissions-up-by-8-per-cent-in-a-year (accessed 14 Sept 2014)
5. Royal College of Psychiatrists’. Eating disorders in the UK, service distribution, service development and training March 2010. www.rcpsych.ac.uk/files/pdfversion/cr170.pdf (accessed 16 Sept 2014)
6. Ringer F, McKinsey-Crittenden P. Eating disorders and attachment: the effects of hidden family processes on eating disorders. European Eating Disorder Review. 2006:10:10
7. Martin A, Pascoe E, Forbes D. Health Monitoring nutritional status accurately and reliably in adolescents with anorexia nervosa. Journal of paediatric and adolescent. 2009:19:10