Improving access to and experiences of eating disorder care

Improving access to and experiences of eating disorder care

In this first post that June Alexander has adapted from Alykhan Asaria’s article on improving eating disorder care, underserved groups and humanistic eating disorder care are discussed.

This article on improving access to eating disorder (ED) care is informed by my lived experiences, independent research, and involvement in the underappreciated field of quality improvement (QI).

I live in the United Kingdom (UK), so my experiences and QI are of the UK’s National Health Service (NHS). However, this article applies broadly to healthcare providers worldwide, as similar ED care improvements are needed internationally. Furthermore, the latest international research informs this commentary.

I identify and discuss 12 groups of individuals whom I believe are more likely to be underserved in ED care. These 12 ‘underserved groups’ (USGs) comprise:
1.  People with longstanding EDs and/or older-age ED sufferers.
2. Younger children/preadolescents.
3. People with under-recognised/underappreciated EDs.
4. People with higher weights.
5. People with comorbidities.
6. People with neurodevelopmental conditions (neurodiverse people).
7. Digitally excluded people.
8. Socioeconomically and/or socio-geographically disadvantaged people.
9. Ethnic/racial minorities.
10. Sexual and gender-diverse people.
11. Males.
12.Caregivers/loved ones.

ED sufferers/caregivers are also an underserved group in general mental health care, so broader factors for improving ED care will be explored in a future article. These factors include stigma, research biases, inadequate clinical monitoring and diagnosing, poor-quality treatments, disorganised service transitions, systemic problems/inefficiencies, and underfunding/under-resourcing. Along with these and other broader issues, specific recommendations for underserved groups must be considered.

I advocate a humanistic care approach based on the inexpensive and “CHEAP” principles of:

• Compassion
• Hope
• Empathy
• Appreciation (of identity), and
• Patience 

Worldwide classification injustices

Eating disorder sufferers/caregivers are disproportionately underserved in mental health care compared with people who experience other mental illnesses. The UK Government still does not officially classify EDs as being ‘severe mental illnesses’, unlike conditions such as schizophrenia and bipolar disorder. Similar injustices exist internationally.

I began this paper in late 2023, when the National Director of Mental Health of NHS England (NHSE) invited me to work on improving care pathways for ED patients.

I had expressed concerns about proposed guidance on palliative care pathways for longstanding ED sufferers deemed untreatable. As someone with a longstanding ED that may theoretically fit this categorisation, I regrettably believe that little has improved for this underserved group since 2023, both in the UK and internationally.

On a positive note, Dr Jennifer Gaudiani apologised at the International Conference on Eating Disorders, in March 2024, for the harms caused by the proposal of ‘terminal anorexia nervosa’ two years earlier. This matters profoundly in the UK because the justifications given for (and related assumptions of) the ‘terminal anorexia nervosa’ hypothesis and palliative care pathways are very similar.

Identifying the underserved groups

Given that longstanding ED and/or older-age ED sufferers continue to be gravely underserved, they are the first to be discussed in this article.

Unfortunately, longstanding/older-age ED sufferers are not the only underserved group in ED care. Therefore, after discussing them, I consider the 11 other groups I have identified as more likely to be underserved.

The identified groups are grouped by their shared characteristics and/or circumstances. Despite my unavoidable use of categorisations, every person must be appreciated for their unique identity.

A person may be in more than one group at a given time. For example, longstanding ED sufferers are more likely to have comorbidities, gender-diverse ED sufferers are more likely to have higher weights and neurodevelopmental conditions, ethnic/racial minority ED sufferers are more likely to be socioeconomically disadvantaged, and male ED sufferers are more likely to have under-recognised EDs.

ED sufferers and caregivers are also an underserved group in general mental health care, so my recommendations must be considered alongside broader problems, including stigma, research biases, inadequate clinical monitoring and diagnosing, poor-quality treatments, disorganised service transitions, systemic problems/inefficiencies, and underfunding/under-resourcing. These and other issues will be explored in a future article on broad considerations for improving eating disorder care.

Defining ‘underserved’ and ‘care’

I use the word ‘underserved’ when referring to people who have inferior access to and/or experiences of ED care.

Although access to and experiences of care overlap, a person may have equal access to inferior care or vice versa. For example, an autistic ED sufferer with good access to autism-unfriendly care is underserved.

I use the term ‘ED care’ when referring to interventions provided specifically to treat and/or support ED sufferers and their caregivers. ED sufferers who receive ED-specific care are referred to as ‘ED patients’.

Genuine care is delivered in a caring way, whereas disingenuous care is delivered uncaringly. Genuine care requires compassion, hope, empathy, appreciation (of identity), and patience. For this reason, I proposed the ‘CHEAP’ care model/approach in 2024, to remind healthcare professionals that humanistic care is affordable even when funding and scientific evidence are lacking.

I urge the ‘CHEAP’ approach to be naturally embedded in ED care, in line with the normalisation process theory.

If healthcare providers claim this is unaffordable, their self-declared ethics must surely be disingenuous?

Mental health care is as much an art as a science

Quality improvement (QI) is a broad discipline that aims to improve patients’ experiences of care. Having been involved in QI for ED services in South London for many years, I passionately believe this unique and underappreciated discipline has the potential to bridge the gap between research and clinical practice.

Integrating QI and research has enabled me to appreciate that good ‘experiences’ of care/life (which QI focuses on) lead to positive ‘outcomes’ (which evidence-based research tends to focus on more).

This is why evidence-based treatments do not always lead to scientifically predicted outcomes. True mental health care is an art as much as a science—or a ‘scientific art’ measured by unquantifiable experiences and quantifiable outcomes. Integrating evidence-based treatments undoubtedly enhances ED care and must be strived for as much as finite resources allow. Nonetheless, humanistic care is not conditional on scientific evidence.

An ‘artistic science’

Notably, the same type of care may be experienced in different ways by different people, underlining the importance of patient-centred approaches. Hence, I encourage readers to imagine the experiences of the unique individuals being discussed in my article. It may be argued that this process is a form of phenomenological research, which I interpret as a science with art integrated into it – or an ‘artistic science’.

The phenomenological experience of standing (or at least trying to stand) inside the shoes of others has been profoundly moving.

Although I have lived through and/or been in several underserved groups, I am not an expert on others’ experiences. Thus, the recommendations and ideas in this article are intended to prompt deeper discussions led by the true experts.

Aly’s complete article

To read Aly’s complete article, go to: https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-024-01145-2
Additionally, Aly’s article will continue to be explored over the next few weeks on www.lifestoriesdiary.com/blog