Blog written by experts by experience group

Transformation Partners in Health and Care has worked closely with a group of experienced clinicians and experts by experience to develop a set of guiding principles on disordered eating, and how to best support and meet the needs of this group. This blog has been published as part of a series to explore the topic of disordered eating in more detail and will feature many of the experts by experience and clinicians who helped develop this work. Find out more about this series here.

Young People’s advice on navigating the health service

Navigating the health system and getting the right support for struggles with eating can be difficult. For many of us this meant facing longer waits for treatment, not always getting the diagnosis and treatment we were expecting and dealing with setbacks. We are all individuals and each of us will have different needs. As young people and experts by experience who have contributed to the new Disordered Eating guidance and management approach, we have written this blog to share our experiences of navigating the health system and how we dealt with unexpected diagnosis and setbacks.

Referrals and assessments can take time

We know how difficult it is to get support for your mental health. The process can be difficult and long. From the time you start to realise that you are struggling through to starting treatment is different for everyone. From our experiences this process often includes realising that you are not well. For some of us, it helped to do some research about symptoms from trusted sources like the NHS website or national charity, Beat Eating Disorders. You then build up the courage to tell a friend, maybe someone you know who has accessed support for their mental health. You might then tell your parents and get a referral from your GP or school. At this point there may be a long wait before your referral and assessment can be completed. During this time, you might start to build up a picture of what you think support will look like.

Not getting the support or diagnosis you thought you would can be difficult

There is a common misconception that all issues with eating will lead to a diagnosis of an eating disorder. This isn’t true and goes back to why we have been working to increase awareness of disordered eating. Issues with food can be a symptom of lots of different mental health conditions including eating disorders like Anorexia nervosa and binge eating disorder. They can also be symptoms of other conditions including dysregulation or linked to things like autism. This means that many young people do not always get the diagnosis they were expecting.  We have had similar experiences and want to acknowledge how difficult this can be. You might feel hurt, rejected, scared and unsure what to expect. Your feelings are yours and they are valid. We have pulled together some advice which we hope will help you if you find yourself in this position.

Advice for how to move forward

1. The health system is not perfect and many of us had experience of ‘bouncing around’ and or not getting into the service we thought we would. Our first piece of advice is to not to be put off by the time waiting time: it is important not give up because you deserve help and to feel better.
2. Often with disordered eating, young people may be referred to CAMHS or a Paediatrics’ team when they thought they would receive support from their Community Eating Disorder Service. This can be difficult as you might not know what to expect. With cases of disordered eating young people may be offered Dialectic Behaviour Therapy (DBT) or may need an assessment from the neurodiversity team. Always remember that you can ask your GP or the service you have been referred to for information on what the next steps are and what you should expect. It is important that you feel reassured and understand what to expect next.
3. No matter what diagnosis you have or what service you are referred to, our advice is to get support and lean on those around you. Support from friends and family is so important. The road to recovery and feeling better is difficult and it’s important to have support, rather than trying to cope on your own or relying on behaviours you are experiencing which might get worse if you feel worse. Try to reach out to friends and family and create a good support system so they can help you help yourself.

We hope that the tips in this blog are helpful if you are struggling with your mental health or with issues with eating. We know that not getting accepted into a service or not getting the treatment you expected can be very difficult. Many of us in the group have had setbacks and things we didn’t expect on our journeys towards recovery. We have all been where you are, and we hope that this information in this blog reassures you that you are not alone.

We have also included some resources to support your mental health which we think might be helpful.