Mind The Gap
Quite a few years ago, I got some funding to research the ‘healthcare interface between primary and secondary care for eating disorders in Wales’. What that meant was the changes that people and their families had to encounter and overcome when their main medical and psychological treatment moved from their general practice / family doctors to a specialist mental healthcare setting, for their eating disorders.
I already had a pretty good hunch, from what patients and families told me, that this interface could be a problem. I pictured it in my head as a big gap, and I wanted to find out more about it. I called the project ‘Mind the Gap!’ – a little joke as it echoed the announcements in the London Tube Stations when you step from platform to train – telling passengers to ‘Mind the Gap’ as you cross from platform side to the train, or the other way around. No one wants to get stuck in the gap in between.
How wrong I was! After my research, the picture in my head was no longer of a nice straight gap anymore. Instead, it was – Crazy Paving! What I found was there were cracks and gaps everywhere, not just between primary care (that is, general practitioners/family doctors) and specialist care, but between every type of service and care you could think about. For example, there were gaps between medical/paediatric services and mental healthcare services; there were gaps between inpatient and outpatient services; there were gaps between child and adolescent and adult medical and mental health services (and, even worse, in the United Kingdom you jump from paediatrics to adult medical services at age 16 but you jump from child and adolescent to adult mental health services at age 18 – it wasn’t even in sync!).
Every type of service had its own ethos, its own rules, its own culture. Diabetes services didn’t talk to eating disorder or mental health services, even though we know people with diabetes often have disordered eating or outright eating disorders, and they’re at very high medical risk if they do. Obesity services don’t talk to eating disorder services. And that’s just within healthcare – schools and universities often don’t talk to health services or school or teachers or parents either, even though it’s crucial for young people for everyone to work together to help them. And it’s the same for adults!
What I found out
What I found was that although there were some good individual examples, in general everything was not joined up. At all. And as part of the national eating disorder service reviews across Wales and Scotland, we ran public workshops where the public told us the exact same story. We heard the same thing over and over again. Individual services could be absolutely excellent, clinicians could be excellent, kind, expert and compassionate. But it was difficult to get to them, and often you had to wait to be seen, and just hope you see someone good. Even worse, with scarce resources and ever-increasing referrals (which has only got worse in the pandemic), people who desperately wanted help were hearing that they weren’t ill enough or thin enough to get help – and that if they went away and got worse, they’d then get help. It didn’t make any sense to them or to me, because it’s no secret to anyone that if we wait until people are really ill before we try to help them, we’re not very good at getting them better, and by then they often don’t want the treatment anymore because the eating disorder has taken over too much.
It's not all doom and gloom. The Welsh and Scottish Governments are committed to trying to improve services in those countries, and changes are now slowly happening in the United Kingdom. Internationally there is ongoing research on prevention of eating disorders, and even more promising research on early intervention for eating disorders, as well as more peer support work and services designing things to meet the needs of patients and families.
Journey with me.
As one of the many casualties of the Covid pandemic, I am no longer able to work in a normal clinic. However, I want to use this as an opportunity to develop something quite different, which doesn’t compete with treatment services and models but just offers something additional which may be helpful to some people. I have been on a personal journey rediscovering myself and learning to develop new sides of me now I have had to give up my workaholic medical academic ways.
I have begun to enjoy learning art and crochet, where I would have told people I had not an artistic bone in my body and no talent for either, I have learnt to explore and enjoy this other side of myself. And that’s precisely the point – I can enjoy creativity without worrying about perfection. I think this openness to exploration and creativity and discovery is what I would like to take forward, using my own skills and experience, in this new enterprise with people. I will never be a great artist or craftswoman or artisan or writer, but that’s exactly the point, I just enjoy it and love what it’s teaching me about myself. And you don’t have to be a great artist or craftsperson or writer, either, if you choose to journey with me.
Welcome to My Lighthouse.
References
Welsh Government: Eating Disorders Service Review. https://www.gov.wales/eating-disorders-service-review-2018
Scottish Government: Eating disorder services review: summary recommendations
https://www.gov.scot/publications/scottish-eating-disorder-services-review-summary-recommendations/
Scottish Government: National Review of Eating Disorder Services: report and recommendations
https://www.gov.scot/publications/national-review-eating-disorder-services/
Johns, G., Taylor, B., John, A., & Tan, J. (2019). Current eating disorder healthcare services–the perspectives and experiences of individuals with eating disorders, their families and health professionals: systematic review and thematic synthesis. BJPsych open, 5(4), e59.
Demmler, J. C., Brophy, S. T., Marchant, A., John, A., & Tan, J. O. (2020). Shining the light on eating disorders, incidence, prognosis and profiling of patients in primary and secondary care: national data linkage study. The British Journal of Psychiatry, 216(2), 105 -112. https://www.cambridge.org/core/services/aop-cambridge-core/content/view/A00E32E32B0FB324075CF2CF0973687F/S0007125019001533a.pdf/shining_the_light_on_eating_disorders_incidence_prognosis_and_profiling_of_patients_in_primary_and_secondary_care_national_data_linkage_study.pdf
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