"My experiences as a carer of a daughter with anorexia"

Over the past 18 months I have experienced one of the worst events of my life. In late 2015 my daughter was formally diagnosed with anorexia nervosa. Before this we had believed she had a physical health condition which would explain her rapid weight loss; however all our worst fears were confirmed when the final physical tests came back negative and we were told to seek psychological interventions. At this stage our daughter was 18 so we turned to our GP to refer her to the Notts. Trust Eating Disorder Service (ED). We had our first appointment having waited for a number of weeks and watched our daughter gradually becoming more and more unwell. By the time the appointment came, her BMI was below 14 and as I sat waiting for my daughter to come out from her first appointment I fully expected to hear that she was being referred to inpatient services; however, she came out holding an appointment card to be seen in a further two weeks.

I was amazed and infuriated. I demanded to see the psychologist and when I got into the room, demanded that an inpatient referral be made. This was agreed but I was left wondering what might have happened if I'd not insisted on it. It was at this time that I discovered that Notts. Trust does not have it's own inpatient ED service, nor does it have any substantial out-patient service and aside from a once a week appointment at our local Bassetlaw hospital, any additional support must be sought in Nottingham which is approximately one hours drive away from where we live. Our daughter eventually found a bed out of area which the commissioners agreed to fund and was in hospital for 8 months.

At her review, her psychologist was given clear instructions to re-refer her back to in-patient services if her BMI went below 15. Our daughter came out of hospital a year after diagnosis and gradually began to relapse. Having come from hospital with a 24/7 support network to a once a week appointment and occasional meeting with a dietician just wasn't enough. In an attempt to prevent a relapse we spent hundreds of pounds trying various therapies but it was difficult to find specialists in the ED field without travelling long distances which our daughter found too much. Eventually it was our daughter who said she was becoming concerned about her relapse and asked me to weigh her. When I did I discovered that her BMI was 13. 7 and she had not been re-referred to in-patient services.

Once again I have had to contact the ED service to arrange for a psychiatrists appointment and travel to Nottingham where it was confirmed that our daughter does indeed need to go back into hospital. Unfortunately, because it was left so late, she is now critically ill and the ED service has had to search for an emergency bed anywhere. We are now waiting for the confirmation of a bed in Glasgow. Our daughter is only 19 and although we welcome the bed, we are distraught at the idea of sending her so far away. The money that it must be costing the Trust to fund long periods of stay in hospital settings could surely be better spent setting up a more robust day service with more rural hubs to support patients more effectively in the community. As we speak, I am waiting to find out whether my daughter needs to go into Bassetlaw to be tube fed, in which case she will lose her bed in Glasgow and go back on the waiting list.

The system appears to perpetuate the need for the patient to become more and more unwell. My daughter is well aware that the only way to move up the priority list for a bed is to become more unwell than the next person so that she can jump the queue. A day service and a specialist crisis intervention service may have averted this need. The ED service is only open 8. 30-5pm Monday - Friday. There is no emergency phone number. On the one occasion when we were in crisis we called the Bassetlaw Mental Health Crisis Intervention Team and they suggested we come for an appointment at the A&E Department. Whilst the clinician that saw our daughter was very kind, they may have inadvertently triggered our daughter's anorexia due to their inexperience and made her much worse. Surely it would make sense to train some of the staff in specialist ED skills. ED kill more people each year than any other mental health diagnosis so why then is it considered to be the poor relation within this Trust and nationwide.