"Lack of support for young people with eating disorders"

My son started treatment for suspected labyrinthitis. We went back to the GP as he wasn't getting better and, during a routine blood pressure test, he passed out. Several days later I had to call 111 as a result of headache, dizziness and nausea, and was advised to go to A&E where we spent 12 hours. After MRI and blood tests which were all clear we went back to the surgery, where it was suggested this could be an eating disorder.

I started to monitor his food and drink and had the discussion with him and we agreed we needed help, so went back to the GP, who referred us to Sheffield Children’s eating disorder team. They wrote to me 3 weeks later to say that we are out of area and they couldn’t accept him. I made a self-referral to RDASH eating disorder team (CEDS) and they triaged us with the outcome that they suspect ARFID but that there is no pathway in Rotherham. We went back to the GP, where I demanded a referral to Camhs and a dietician (as advised by RDASH). 

We had a Camhs triage last week with RDASH, again it was suspected ARFID, and are waiting on a decision for their 30-week waiting list, and have an appointment with a paediatric dietician at the end of April.

On the advice of SYEDA, who have been really helpful and are supporting me to better support him, I contacted my GP surgery and demanded a regular medical appointment. At the first checkup he again fainted and his bloods show low phosphate and iron levels. The GP advised if he continues to feel unwell the only avenue is A&E.

Last week, still unwell and unable to go to school I called 111 and we were sent to A&E where we spent 8 hours, had more bloods and were again sent home. He didn’t faint but it was close! Unhelpfully, the doctor we saw didn't believe in eating disorders, but referred us to the Rapid Access Paeds Team. At that appointment, I found out his phospate was really low and the doctor we saw was very helpful and approachable. They agreed with the ARFID diagnosis but we now have a prescription for phosphorous and vitamins and a repeat visit in a month.

My son eats around 1000-1500 calories most days, weighs 7 stone and is 6 feet tall. He feels unwell and/or lethargic most of the time and his mood is really low (3 out of 4 where 4 is absolutely miserable and suicidal).

I have asked for help now everywhere that is available to me. I worry for my son’s immediate and long-term physical health, his mental health, and for his education as he is missing a lot of school.

How can it be allowed to happen where a young person in desperate need of help doesn't get any? I have complained to the ICB twice and not had an acknowledgment. His physical and mental health are only going to get worse!