Sukayna Al-Aaraji, Independent Mental Health Advocate (IMHA) at The Advocacy Project
Eating disorders affect around 1.6 million people in the UK. Recent figures show that, in one year, more than 2,500 were hospitalised as a result of their condition. The average age was just 15 for girls and 13 for boys. Our team of advocates give an insight into their valuable work with people who have eating disorders.
What makes advocacy for eating disorders different?
Because eating disorders lead to the controlling of food intake, everything on an eating disorder ward is strictly regulated. Food is treatment – so meal times are regimented and routines revolve around that. We help patients negotiate these strict conditions which they often find upsetting, helping them to have a voice. Patients are of a young age and the mortality rate is high.
How we support patients
When a patient is newly admitted, Sukayna – one of our advocates – explains that our role is confidential and independent from hospital staff. If they are sectioned under the Mental Health Act, we will explain their rights and support them to access legal representation if they want to challenge it. Helping patients communicate with their clinical team is a key part of our work; we attend ward rounds and support them in advocating for themselves. Above all, we are there to listen, to amplify their voice, to inform them of their rights so that they are able to be active in the decision making affecting them.
Understanding the challenges
As advocates, it’s our role to uphold patients’ rights and not to judge them. If a patient wants their section to be lifted, but are in a life-threatening condition, we don’t advise them on what we think is best. We explain their rights, and the consequences of acting against medical advice. This helps build trust and means they can make informed decisions.
Little things can make a big difference
Sometimes the small things we do have a really positive impact. One young woman felt empowered when she realised she could leave the ward with a member of staff for some fresh air. Another teenager was desperately homesick and felt she couldn’t get her concerns across to the consultant. Her advocate helped her plan the points she wanted to express and came to the meeting with her. She had a very positive discussion with the consultant, which led to her attending the clinic as a day patient instead.
The younger children we support often lack confidence to express themselves. One nine-year-old patient felt nervous about the number of adults in her care plan meeting. Together, she and her advocate came up with a way of communicating: the patient would tap the advocate on the arm if she wanted the advocate to speak for her, or tap the advocate on the knee if she needed a break. This collaboration boosted her confidence and helped her communicate.
Although it’s demanding, advocacy for people with eating disorders has a clear and positive impact. Our skilful and experienced team provides a vital service in helping people to have a voice.