"More could have been done"

I was treated by the team at Sheffield Eating Disorder Service and although I feel there are good individuals within the service my experience was overwhelmingly negative with my eating disorder getting worse whilst under the service. I have tried to access my medical records but have had no response so I am unfortunately not able to give exact date etc.

- I felt communication under the service was poor. On numerous occasions we called the service but our calls we not returned. I also turned up to the service to be told that my appointment had not been booked in. On another occasion I was told my nurse was on holiday only to turn up and see her there.

- I was left on a waiting list to see a psychologist for months but never updated, even when we got in touch, and I was taken off the waiting list for that treatment without being told.

- Appointments were often irregular and inconsistent. Until my school intervened, I was waiting up to 5 weeks between appointments. Throughout the entirety of my treatment I never received the 20-40 appointments suggested by the NICE guidelines for anorexia.

- I feel there was an overwhelming focus on my weight, at the detriment to considerations around my mental health. I was initially turned away from the service because my BMI was not under 17. 5. This was very upsetting and stopped me from seeking help again for over a year. I later sought help from SYEDA and was offered 16 sessions, but despite having had only a few appointments there, I was sent back to SEDS because my weight dropped below their criteria. This transitioning between services was based purely on BMI and meant that it was hard to generate trust and get started with treatment. I felt this attitude was observed throughout my treatment with my weight being the focus instead of considering it as part of my general wellbeing. Even once I was being seen by SEDS I felt there was sometimes an attitude that my weight ‘wasn’t that bad’ which at times encouraged me to lose weight in the hope of being taken seriously/getting treatment.

- The whole atmosphere at SEDS was very uninviting. The building was often freezing cold, which is not suitable when this is a common problem for those with eating disorders, and generally felt tired and unsuitable. As some of the consultation rooms surrounded reception conversations could sometimes be heard so you felt a lack of privacy. Some of those on reception were not welcoming and arguably indiscrete. I felt there was often a general lack of warmth and compassion and much more could be done with the space to make it a more relaxing environment.

- On the occasions when I was told that treatment was not suitable for me, I was left completely without any support or plan of how to keep myself well. Whilst still being ill I was left for an extended period of time without any contact from the service at all. I feel that service users should be offered regular check ins with a mental health professional when they are not currently being offered support as well as having a clear action plan as to what they can do not to deteriorate and what other services will be involved in their care if necessary.

- I feel like my discharge from the service could have been handled better. I saw the threat of being discharged as something which was being used against me due to lack of progress at a time where I was really struggling and highly emotionally distressed. I do not feel I was in a place to be making rational decisions about what would be best for my future and yet it was clear I wanted to find a way to engage with the service. I think more could have been done to make me feel safe and supported in order to continue with treatment.

Unfortunately, I feel like my experiences with this service has put me off seeking support from them in the future. Although I believe that there are some good clinicians there, I feel like they are held back by the service’s very rigid, one-size fits all approach to treating eating disorders. There was very little flexibility in terms of treatment, with a huge focus on what I ate/weighed, instead of how I felt and thought. I understand the service has to be evidence based and cannot always help everyone but I think having such rigid criteria about who they treat and how, means that anyone that doesn’t fit into those specific boxes will fall through the cracks.

I think much more could be done to make the service feel a safe and compassionate place. I also think that it is key that those who aren’t currently receiving regular treatment but are still struggling and want to engage with the service are offered some kind of support. I think having phone calls from someone in the service would have helped me feel like I hadn’t been abandoned, as well as a clear plan of what I should be doing whilst waiting for support.