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To Local MPs

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Dear MP,

Urgent action is needed by the UK Government and local Clinical Commissioning Groups (CCGs) to address the huge lack of funding into Eating Disorders services across the country.

Eating Disorders (ED) services in Oxfordshire, Wiltshire and Buckinghamshire, which we focus on as a case study in this letter, are almost at breaking point[1a]. The situation is reflected in many other areas across the country, for example the North East and Yorkshire[1b,c] and the rest of the South. This was already an issue before the pandemic hit; the current pandemic has, however, exasperated the situation with increasing acuity and even higher referral rates.

The recent BMJ blog[2] released by senior clinicians at Cotswold House, a tertiary referral centre for adult ED care covering the three counties of Oxfordshire, Wiltshire and Buckinghamshire, shows the extent of the current situation:

“Covid-19 has intensified the crisis in adult Eating Disorders services. Since the emergence of the pandemic, clinicians have been reporting an increasing number of patients presenting with acute emergencies needing hospitalization due to extreme malnutrition or other severe complications. Eating Disorders thrive in isolation, and the lockdown had a major impact on some patients’ mental health.”

This is only echoed by senior ED clinicians around the UK:

“The situation in the North East is similar to that elsewhere. The difficulties with delivering treatment have been exacerbated by Covid. In addition, many patients who were progressing OK prior to Covid have experienced relapse due to the challenges that the global pandemic has brought.” - Dr Melanie Bash, Consultant Clinical Psychologist.[1b]

"Pressure on often underfunded adult ED services has been mounting for years which has been further magnified by the recent impact of COVID and lockdown and we have seen this in West Yorkshire. Further funding, training and waiting time target initiatives are urgently needed to ensure patients receive evidence-based treatment in a timely fashion in a setting which best meets their needs." Dr. William Rhys Jones.[1c]

Cotswold House, a tertiary referral centre for adult Eating Disorder care covering the three counties, has been forced due to a lack of resources to only accept referrals for severe or extreme Anorexia Nervosa (AN) or Bulimia Nervosa (BN) (classified by DMS-5 diagnostic criteria[3])[1a]. Even those patients whose referrals are accepted are likely to face long waiting times[1a], with waiting times increasing to 21 months in Oxfordshire and 25 months in Buckinghamshire in the last year.

In addition to this, waiting lists for inpatient admissions are double that of the previous year. In a given week, twenty-four patients are waiting for a bed in their inpatient unit[1a]. Given that the average stay in inpatient units is very protracted (18.2 weeks[4]), this situation is only likely to worsen with time. According to NHS Digital[1a], admissions for eating disorders have almost trebled since 2010, while there has been no additional funding for specialist beds. Covid-19 has naturally reduced capacity, further exacerbating the situation[2].

The huge waiting lists for inpatient beds means many patients have to move miles away from home to get treatment. Not only does this interrupt patients’ social networks, which are often crucial for recovery, but patients treated far away from home have a lower chance of successful inpatient treatment. Following discharge, community ED services often don’t have the resources to offer ongoing evidence-based treatments, resulting in revolving-door admissions.

Beat released a report on waiting times in 2018/2019[5] for the previous year. They found that long waiting times had the following effects:
- Declining health and quality of life of patients.
- Incentive to maintain or increase severity of illness.
- Allows doubt for patients on whether they deserve treatment or not.
- It also risks patient safety.

Early detection and treatment of EDs could save the NHS huge amounts of money both from avoidance of inpatient admission and from secondary health effects of the illness, highlighted here by Dr David Coyle, an ED psychiatrist from Northern Ireland[1d]:

“I am in total agreement that there is a need for increased support and funding for Eating Disorder Services across the UK. That support needs to be both financial, but also in terms of the public education and ethos as to honest, appropriate strategies to treatment in the long term. I do not think that inpatient beds are the ‘solution’ and as a short term measure are infinitely more costly that necessary improvements to outpatient care. We can no longer afford to simply ‘firefight’ the problem at its most severe point, and must dedicate ourselves to a more holistic, lifelong and co-operative approach that takes into account the entire at-risk population.”

The NICE guidance[6] recommends that ED patients should have equal access to treatment regardless of age, gender, sexual orientation, religious or cultural belief, socioeconomic status, where they live, and other physical and or mental health problems. Currently, it is very clear that this is not being met, as how stretched a patient’s local services are, whether they fall into CAMHS or adult services, and whether or not a patient can afford private health care, determines the treatment they are able to receive.

Additionally, the NICE guidance[6] recommends treatment options that are most likely to work. These treatments are typically very long, reflecting the entrenched nature of the illness, e.g. 40 individual sessions for Anorexia Nervosa, 20 individual sessions for Bulimia Nervosa. Services need sufficient funding to deliver these treatments.

The NICE guidance says that “local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it”. The clinician working in ED services clearly want to be able to use the guidance, but currently do not have the funding and resources to do so. Local commissioners and health care providers have a duty of care to ensure more funding is given to services to enable them to do this. Despite recent investment by commissioners in the Oxford community ED services, adult services remain significantly under-resourced compared to CAMHS ED services, and therefore unable to meet the demand. The problem is further compounded by recruitment difficulties, especially in Oxford where the cost of living is high.

The current situation is horrendous for NHS patients and staff. How can we expect to recruit more people to work in Eating Disorders services when it is a constant battle to find resources for patients desperately in need of help?

The huge demand in adult Eating Disorder services combined with the lack of associated funding and resources means that only the sickest individuals can actually receive treatment currently. While refusing treatment based on BMI is against the NICE guidance[6], services simply do not have capacity to accept all ED patients currently. This means only the physically sickest patients can actually receive treatment.

Not only does this mean that patients with mild/moderate Eating Disorders are not treated by experts, it also incentivises worsening of patient’s conditions. This goes against work by many charities such as Beat to increase the early detection of EDs.

In no other health condition would it be deemed acceptable to only treat the sickest individuals and subject them to extraordinary long waiting times. Just as in cancer care, there is a large body of evidence in the literature that the earlier ED are treated the more likely that a patient will obtain a full and sustained recovery[7]. In cancer care the focus of the NHS long term plan is to get early diagnosis and treatment, to improve prognosis[8]. By contrast, the focus of the NHS long term plan for mental health has promised very little for adult Eating Disorders services, bar developing an integrated care model[9].

Despite the PACAC report into avoidable deaths[10], waiting time targets and funding have only been established for Children’s and Young people’s (CYP) Eating Disorder services. This needs to be established for adult ED services also.

Other avoidable death reports have been published about adult ED services across the country, but so far, no firm action has been taken by the government to increase funding for adult ED services. Notable examples of reports on avoidable deaths include:

- The failures in Cambridgeshire and Peterborough health services to prevent ED deaths of five young women[11]. The coroner Sean Horstead has stated ‘his concerns about the monitoring of people with Eating Disorders and calls for greater clinical training in the area, for staff ranging from "consultants to health care assistants.” A full report is currently in progress.
- An article published in the Guardian[12] in 2020 revealed that “at least 12 highly vulnerable people with Eating Disorders have died over the last seven years after failings in care that were so severe that coroners in England and Wales issued legal warnings to hospitals to try to prevent further deaths.”

If the health and wellbeing of patients was not enough to encourage early treatment, Eating Disorders have a huge negative impact on the economy, through lost hours of work from both the sufferers and their carers[13].

It is estimated by Beat (an Eating Disorders charity) that 1.25 million people in the UK suffer from an ED[14]. A recently published 2019 National Health Survey[15] reveals that 19 percent of women and 13 percent men display signs of an eating disorder. This is immensely increased from a similar study in 2007[16] which showed that up to 6.4 percent of adults displayed signs of an ED. Clearly EDs affect a significant proportion of the UK population and urgent action is needed to improve care and prognosis of these patients.

Eating Disorders wreak havoc on sufferers and their family’s lives. In the appendix at the end we share survey results of 250 individuals across the UK, as well as hundreds of comments from those who have signed this letter. These include stories of past and present sufferers of an ED, loved ones and senior NHS professionals and we strongly urge you to read them in order to give you a glimpse of how this awful illness can quite literally consume someone’s life and how immediate change is needed. (Appendix B, C, D)

Action needed across the country
The following actions need to be taken to improve adult Eating Disorders services across the country by the government:
- Increase funding into adult community and inpatient services.
- Set waiting time targets for adult Eating Disorder services (with associated funding), at least equivalent to that of CAMHS Eating Disorders services.
- Repeat the adult psychiatry morbidity survey to assess need.
- Increase Eating Disorder training for all medical professionals, both to increase interest in the profession and to save lives through greater understanding of them.
- Increase funding into research to improve treatment.
- Increase the number of beds in inpatient Eating Disorder units across the country.

As an MP, you can help bring about these changes by writing to the Secretary of state for Health and Social Care, and the Minister of State for Patient Safety, Suicide Prevention and Mental Health to demand urgent action to be taken on this and to request an urgent debate on this crisis.

Action needed in the local area
- The local CCGs need to evaluate the funding they give to adult Eating Disorders services in your local area to improve services and save lives.
As an MP you can write to your local CCG demanding an enquiry into funding for adult Eating Disorders services.

TO SIGN THIS OPEN LETTER: https://platform.organise.org.uk/campaigns/teamup-crisis-in-adult-eating-disorder-services
Appendix (Click on links below)
[A] Original letter, first published 17/12/2020.
[B] Some personal stories.
[C] Organise Survey results with experiences of individuals across the UK.
[D] Comments on the open letter: Why is this important to you?

[1] Personal communication with eating disorder services
Cotswold House Eating Disorders services (Oct 2020).
Northern Centre for Eating Disorders (Jan 2021)
CONNECT West Yorkshire and Harrogate eating disorder services (Jan 2021)
Northern Ireland Eating Disorder Services (Jan 2021)
[2] Colins, L., Ayton, A., Viljoen, D. (2020). Treatment for Eating Disorders during and after Covid. BMJ
[3] American Psychiatric association (2013). Diagnostic and statistical manual of mental disorders: DSM-5. Arlington, VA, American Psychiatric Association.
[4] Royal College of Psychiatrist (2012). Eating Disorders in the UK: service distribution, service development and training.
[5] Beat (2019). Lives at risk: The state of NHS adult community Eating Disorders services England.
[6] NICE (2020). Eating Disorders recognition and treatment.
[7] Brown, T. A., Murray, S. B., Anderson, L. K., & Kaye, W. H. (2020). Early predictors of treatment outcome in a partial hospital program for adolescent anorexia nervosa. International Journal of Eating Disorders.
[8] NHS Long term plan (2020) Cancer.
[9] NHS (2020). NHS Mental Health Implementation plan 2019/2020-2023/2024.
[10] Pacac inquiry (2017-2019). Ignoring the Alarms follow-up: Too many avoidable deaths from Eating Disorders
[11] BBC (2020). Anorexia: How the Eating Disorder took the lives of five women. BBC.
[12] Guardian (2020). Eating Disorders: 12 deaths in seven years led to coroner warnings. Guardian.
[13] Beat (2020). Statistics for journalists.
[14] Beat (2015). The cost of Eating Disorders: Social, Health and economic impacts.
[15] Health Survey for England (2019)
[16] Adult Psychiatric Morbidity Survey (2017)
[17] Mitchell, James Ea; Crow, Scott (2006). Medical complications of anorexia nervosa and bulimia nervosa, Current Opinion in Psychiatry.

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Signers list

Millie Baines
Rachel Kneen
Emily Louise Enticknap
Poppy Kemp
Molly Crossley
Natasha Hallett
Max Watkins
Laura Cahane
Ese Kanayo
Mary Elizabeth Hall
Kayla Lister
Frances Gibson
Amy Davies
Susan Abrahams
Tabitha Hempshall
Matilde Soares Da Silva
Erin Dear
Catherine Ashworth
Lucy Nicholls
Hannah Smith
Trudy Coles
Amber Horner
Rebecca Nicholls
Simon Ottino
Holly Simpson
Thea Simpson
Kayleigh Macdonald
Sam Bramhall
Abigail Filer
Dr Gillian Combe
Lily Collison-Cook
Julia Warren
Jacky Dale
Emily Dickerson
Dr Rachael Middleton
Victoria Tate
Tilly Axworthy
Anne-Marie Pollard
Yoli Plumley
Georgia Harding
Holly Fleming
Shazeaa Ishmael
Lily Foat
Augustine Allain-Labon
Sarita Williams
Holly Jackson
Dionne Spencer

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