If I’d been given palliative care when I had an eating disorder, I would not be here today | Dorothy Dunn

The leaking of NHS documents last week describing how patients with longstanding eating disorders could be offered palliative care under new guidelines in the east of England was shocking but not unexpected. The very fact that these severe and enduring eating disorder (Seed) treatment pathways exist at all is scandalous.

A running joke among service users is that the Seed treatment pathway is where you go when services have given up on you. Outpatient services seemingly don’t know how to treat these patients other than to manage terminal decline. But inpatient services don’t, either – the fact that palliative options are even on the table shows that.

In general, fewer than half of patients with an eating disorder recover, and approximately 20% develop a longstanding eating disorder. These patients end up in treatment pathways that often appear ad hoc, and may not reflect the best available practices. Indeed, Dr Agnes Ayton, a consultant psychiatrist and the vice-chair of the Royal College of Psychiatry’s faculty of eating disorders, has stated that the institution had not even been consulted on these “new” guidelines that include palliative care, and do not endorse them.

The charity Beat also issued a statement, saying: “Palliative care must never be considered for people with eating disorders and we have raised this issue with NHS England as a matter of urgency”.

The recent tendency in mental health and eating disorder treatment has been to emphasise community care, rather than hospitalisation. Hospitalisation can cause institutionalisation (it is not uncommon for admissions for eating disorders to last more than a year) and the treatment itself can be harmful (the risk factor of placing many extremely unwell patients with eating disorders together, when the illness is highly competitive, can exacerbate unhelpful behaviours.)

But I also worry that this emphasis on care in the community overlooks the lack of inpatient eating disorder unit wards in the UK in the first place.

There is no specialist residential unit for people with eating disorders in Wales. And even when there are inpatient eating disorder wards, it is not a given that they are adequately staffed. I have heard of wards being run at half capacity with only one consultant. Inpatient wards are constantly understaffed and keep afloat by relying on a rota of expensive “bank staff”, who are often unfamiliar with the intricacies of eating disorders. This is perhaps one of the reasons why some patients get “stuck” in their eating disorders, and are unable to recover in any meaningful way.

The sad truth is that unequal access to fewer and fewer resources will inevitably lead to more and more patients being cast as “untreatable”. Hospital admissions for eating disorders increased by 84% between 2015-16 and 2020-21, but if these admissions are to wards that are crumbling, it is hardly surprising that patients do not make a recovery and find themselves being offered palliative care further down the line.

This is especially frustrating because I know that recovery is possible for everyone, no matter how old they are, how many inpatient admissions they have had, and how many years they have had an eating disorder. I was a Seed patient and, at my nadir, could have been someone who was offered palliative care. It is important to remember that no matter how “hopeless” somebody may seem, it is vital to keep on hoping.

I am still not entirely sure how I arrived at recovery, and what broke the cycle, but one of the things that I know did help was trust. I reached a point where I could have honest conversations with treatment staff about what I was struggling with. But the key is that the staff I finally opened up to were some of the rare few who had stayed with the service throughout – something that can’t be guaranteed in today’s health service.

Underfunded and understaffed eating disorder services lead to stagnation in recovery and, sometimes, acceleration of the illness itself. More accessible services, with permanent, well-trained staff, would make a huge difference. Funding is the stable foundation that is needed to build any healthcare service on. Tom Quinn, Beat’s director of external affairs, concurs, telling me: “NHS staff are doing all they can to support patients, but the government must ensure that funding pledged to eating disorder services reaches the frontline.”

Finally, this illness desperately needs more research. According to Beat’s Breaking the Cycle report, while eating disorders account for about 9% of the total number of people with mental health conditions in the UK, they accounted for only 1% of the funding from 2015 to 2019. Eating disorders are still little understood – research would help explore how and why they develop, and importantly, how to help patients.

We should not be giving up prematurely on people who could be helped. That’s the wrong direction of travel.

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