Friday 28 February 2020

The Need for Changes to NHS Eating Disorder Recovery Services

Emily shares her experience of living with an eating disorder and struggling to get help.
- Emily

Experiences in the NHS vary from person to person in different locations across the country. The NHS is absolutely brilliant in many cases, but since it is underfunded in many areas, people in need can slip through the hands of the system. Having myself struggled initially to access professional support through the NHS, I am sharing my story to inspire others to keep on asking for the help that you need, whilst shining a light on the need for change to NHS mental health services. 

When I initially told my GP that I thought I had an eating disorder and my periods had stopped due to my low weight, I was told that unfortunately my weight meant that I was not a priority for professional support. This can be the case for many of those suffering eating disorders as the threshold for referral to specialist treatment can be based on having a very low BMI. To my eating disorder, this felt like a challenge to keep on losing weight, encouraging it almost, which can feel so distressing especially when you are finally finding the strength to reach out. It can feel like you have to be ‘sick enough’ or to have reached crisis point before you ‘deserve’ help. 

My ED continued to spiral during college and university; I became more isolated, stressed and anxious with the intensive workload and exams, while the evil voice in my head was pushing me to eat less and less in order to cope. I struggled to focus in lessons as my starved mind was fixated on my hunger and I didn’t have the energy to want to do anything with my new friends, so I had no one to turn to for professional support as my particular university didn’t have a counsellor or nurse available at that time. With my body changing, I hated the way I looked as my ED focused on starvation and punishment rather than body image. Clothes didn’t seem to fit, my body was constantly struggling to keep warm and my body hair grew excessively so I just wanted to stay home.

I returned to the GP once again several months later, after having lost more weight and still not had my period. I was referred to a dietician on a 3-month waiting list. Having hoped for more targeted support to manage my eating disorder, I was left disappointed and let down. She suggested I eat healthy foods, do more exercise and stated that I didn’t have an eating disorder. 

At the start of the new year, I realised that my mental health was continuing to deteriorate and that I needed help. I decided I didn’t want to live with my ED controlling my life anymore. So, I asked for help again after having lost even more weight. I was tested with bone scans, blood tests and ECG’s until I was finally referred to a specialist clinic an hour away. I was grateful for some support, but the appointment availability was scarce and few, with my first appointment even cancelled due to lack of staff. 

However, now I am receiving proper professional help, I can’t stress how glad I am I reached out and how impressed I am by the services of the caring NHS nurses who are dedicated to getting me better. It shows there is light at the end of the tunnel once you make the first step in asking for help. 

My experience, like many others, shows how underfunded and unspecialised the NHS system for eating disorders can be. Given these limitations, it is even more important to stay focused on asking for help in order to get the support you need. GPs need more training on how to spot the signs and how to refer specific treatments to ensure patients get to help they need fast without getting lost in the busy system. And for those that might feel like they are slipping through the fingers of the NHS, keep asking for help no matter how discouraging the process can feel. There is a light at the end of the tunnel. 

For more information on finding support, click here. For advice on support a friend with an eating disorder, click here 

Emily is a first-year university student in London sharing her story to inspire others to get help.

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