Programme launched to speed up anorexia recovery times
Around 1.6 million people in the UK are affected by an eating disorder, estimates the National Institute for Health and Care Excellence (NICE). In Lincolnshire, a pioneering nurse-led eating disorders service and anorexia day programme is helping people overcome these devastating illnesses
An eating disorder team is bringing people together to overcome the illness, reports Julie Penfold
Around 1.6 million people in the UK are affected by an eating disorder, estimates the National Institute for Health and Care Excellence (NICE). In Lincolnshire, a pioneering nurse-led eating disorders service and anorexia day programme is helping people overcome these devastating illnesses.
Eating disorders such as anorexia nervosa and bulimia nervosa feature severe disturbances in eating behaviour and weight regulation. They have the highest mortality rate of any mental illness, with up to 20% of those seriously affected dying prematurely. However, research has shown the earlier treatment is sought, the more likely patients are to make a full recovery. An eating disorders fact file is shown below.
Eating disorders fact file
- Eating disorders can affect anyone at any time, but girls and young women aged 12-20 years are most at risk.
- 15-20% of cases are boys and men.
- Anorexia is the rarest eating disorder at 10% of cases. Bulimia is the most prevalent (40%).
- The causes of eating disorders are complex and not yet fully understood, but include a mix of genetic, biological and cultural factors.
- Eating disorders are treatable and people can recover fully.
- The number of people seeking help and treatment has increased over the past 20 years.
Lincolnshire Partnership NHS Foundation Trust’s (LPFT) eating disorders service covers the geographical area of Lincolnshire, providing specialist support and treatment for women and men over 16 affected by anorexia, bulimia or atypical eating disorders.
An eating disorder is described as atypical if it has features that closely resemble anorexia or bulimia but does not meet the precise diagnostic criteria of either. For example, a patient’s weight is just above the diagnostic threshold for anorexia nervosa; binge eating and purging may occur infrequently; or (for women) body mass index is less than 17.5 but menstruation still takes place.
The eating disorders service is open between Monday and Friday, 9am to 5pm. The small team includes two eating disorder nurse specialists, a consultant psychologist and psychiatrist, two part-time Band 5 nurses, an anorexia day programme co-ordinator and a part-time band 3 support worker.
In January 2012, the service launched the anorexia day programme with a £5,000 grant from the Queen’s Nursing Institute and the Burdett Trust for Nursing. The frontline initiative began one day a week for those experiencing severe anorexia nervosa. The day programme now runs three days a week, on Monday, Wednesday and Friday, 10.30am to 3.30pm.
Before the day programme was introduced, Lincolnshire patients with anorexia would have one-hour weekly appointments with a clinician.
As the county has no inpatient anorexia services, patients requiring more intensive support had no alternative but out-of-county admission. The aim is to prevent people from being admitted to hospital and to assist with recovery in a real-life situation.
‘When patients have to go to the other side of the country to be admitted to an inpatient unit, it is very difficult for them,’ says Charlotte Long, eating disorder nurse specialist at LPFT. ‘They are away from their family, friends and they are away from real life. It is not helpful. They are not just admitted for a couple of weeks, they can be an inpatient for months or even years.
‘Admission rates have increased yet the number of available beds across localities has not risen in line with this. It can be a big challenge for patients to continue with the progress they have made as an inpatient when they return home. The programme can help to bridge that gap and prevent long inpatient stays.’
Patients on the 12-week programme predominately attend three days a week. Groups are kept quite small with eight patients on average per day.
Patients that make progress with their recovery may reduce the number of days they attend, under the guidance of the team. In addition, patients may attend for one or two days a week around other commitments they want to maintain such as study or work. Weekly one-to-one patient clinician appointments usually take place during day programme hours. The programme has worked with 31 patients with anorexia to date.
As part of the programme’s daily schedule, each patient has a morning and afternoon snack as well as lunch. They are also involved with meal planning, shopping for ingredients and preparing meals. Patients receive clinical, peer and group psychological support as part of the programme.
There are two group sessions each day. Issues covered can include practical advice on shopping for food, for example. Other sessions will focus on addressing the thinking that surrounds anorexia. For example, the group will look at coping strategies and how to manage unhelpful thoughts, low mood and self-esteem.
Hannah Gration is a patient on the anorexia day programme who has recently raised more than £800 for the LPFT eating disorders service via a sponsored skydive. ‘The day programme helps you challenge the things you’re afraid of and your thoughts and fears with food,’ she says. ‘The programme keeps me on track and makes me realise there is light at the end of the tunnel.’
Patients are also encouraged to talk through any concerns and worries they have throughout the day. With staff support, the group will then look at how they can help to support other participants that are experiencing challenges.
An external dietician also provides one-to-one patient appointments and holds weekly sessions with the group. Dietary topics discussed include portion sizes and why essential nutrients such as protein, fats and carbohydrates are important.
‘Our day programme has been well designed and covers all aspects of how anorexia impacts on a person’s life,’ says Heather Killick, eating disorders service team co-ordinator and eating disorders nurse specialist at LPFT.
‘Peer support is very useful for those that are suffering. When patients meet others that are going through the same illness, it has a positive impact. Our peer support worker and day programme co-ordinator, Ali Young, is also someone that has recovered from anorexia.
‘Patients find it really helpful to have someone around that has that real understanding of the impact of anorexia. He is able to validate what the clinicians are advising patients to do. Having that validation from someone who has had anorexia and recovered is quite powerful. He is a great role model who reinforces the idea that recovery is possible and achievable.’
‘Peer support is useful for those that are suffering. When patients meet others that are going through the same illness, it has a positive impact’
Recovering from anorexia can be a long, slow process. Patients often remain on the day programme for eight to 12 months to address the illness.
The process of prescribing a further 12 weeks is repeated for as long as there is a clinical need. Outreach support is also available on the days patients do not attend.
The eating disorders service has close links with local GP surgeries and the team is in regular contact with GPs and nurse practitioners. The majority of referrals to the service and the anorexia day programme are from GPs and nurse practitioners. Local mental health services can also refer.
Eating disorders can happen at any time in life and the diverse age range of the day programme patients testifies to this. Ages range from young patients aged just over 16 years to people in their 80s.
Weight and body mass index (BMI) are monitored as part of the programme, and patients complete an eating and meal preparation skills assessment every 12 weeks. Scores from the service’s eating disorder questionnaire are also reviewed. The outcomes show that most patients on the programme go on to significantly improve their behaviours in relation to eating. Weight gain and improved BMI scores are also common.
‘We are definitely keeping people out of hospital and promoting earlier discharge,’ says Ms Long. ‘We know that historically these patients would have gone into hospital. We’re saving inpatient bed days and keeping patients at home near their families.’
As part of the anorexia day programme, patients go out as a group and eat socially every two weeks. This represents one of the biggest changes for patients when they have completed the programme.
‘When they start with us, they are unable to eat in front of anyone else,’ says Ms Long. ‘Anorexia takes over their whole lives. We gradually help them get to the point where they feel able to go out for a meal. One of the biggest outcomes for patients is recognising they are getting their lives back.’
The team is currently awaiting news on further funding for the day programme. It has submitted a business proposal to local commissioners and awaits the outcome, which is expected this month.
‘In an ideal world I would like that funding to be recurrent,’ says Ms Killick. The team is hoping to extend the programme to five days a week and include breakfast and evening meals.
‘We’re really proud of how the programme has evolved and we’re hoping that it will continue.’
Julie Penfold is a freelance health writer