Dear ICED: "We need change NOW"

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Jen’s experience

East Sussex, UK

My daughter was diagnosed with Anorexia Nervosa in March 2007. She was just 14. Turns out she also had depression, which to my shame I hadn’t realised. We’d moved home the previous year as her dad and I had split up; I’d moved closer to work and my family. It made sense to move, but it meant that she and her younger brother had to change schools. I knew her brother would be fine, but my daughter was always anxious as a child and found the change hard. Now I know that anxiety and hyper-sensitivity can be a sign of being predisposed to an eating disorder (ED). To my knowledge, no-one in my family ever had an ED.

We were referred to CAMHS (Child & Adolescent Mental Health Services) and were seen within a few weeks. We were asked about diet, family dynamics, recent events etc. I was told to feed her three meals and three snacks a day. But these professionals didn’t have the resources or the knowledge to tell me how to re-feed my daughter. Mealtimes were a battleground. If only I knew then what I know now, nine years later. At one stage they sent a nurse round to help, but all she did was get cross with my daughter and told her she was ungrateful for not eating the food I’d cooked. I instinctively knew that was the wrong approach! I was right in that, at least.

Many CAMHS and Adult Services still don’t provide up to date ED treatments. In fact, one particularly difficult female clinician, who was assigned to my daughter when she was 20, actually said to me a couple of years ago on my questioning: “This is how we have always done it, since the 1970’s.” This old-school approach needs to end!

Resources in mental health services are desperately needed in general, but more specifically we need:

• more ED hospitals/beds
• more and better qualified staff
• vastly improved community care
• more psychological therapists for both in-patient and community care
• access to latest research and treatment methods
• law changes to allow over 18’s suffering with ED’s to remain under parents’ care

Currently in UK, as soon as you hit 18 the parents are rarely consulted and are frequently told to back off. The UK’s legal system means that an 18 year old can leave home and, if deemed ill enough, are entitled to Disability Benefits, rent payments to a certain level and just enough money to live off. All this does is provide a ‘safe’ bubble that allows them to isolate further into their illness, unless the sufferer wants to recover and works with their treatment team. If not – and many sufferers, my daughter included, finds it too hard to eat what their bodies need when alone – they face a miserable life of purgatory. If they even survive.

We need change NOW!