‘We’re playing with death’ - Woman who has suffered with anorexia for 30 years hits out at lack of support
PUBLISHED: 06:00 17 February 2019 | UPDATED: 11:47 17 February 2019
A woman who has suffered with anorexia for more than 30 years has highlighted how services continue to fail those with eating disorders.
Sarah Middleton, 62, and from Norwich was moved to speak out after this newspaper revealed demand for help was so high that adult patients could only get into treatment when another was discharged.
While GPs were concerned they had to monitor patients while they were on the waiting list, and the service was failing to recruit staff, including the position of a senior psychologist which had been advertised five times without success.
Ms Middleton, of Barnards Yard, was diagnosed with anorexia in her 20s and said she was the victim of the “revolving door syndrome which costs the NHS a fortune and would be unnecessary if aftercare existed”.
She was refused ongoing help from the Norfolk Community Eating Disorder Service (NCEDS) after being discharged from the specialist Newmarket House Clinic in Norwich.
She said: “I was discharged despite the professional admitting I needed help, as I was losing weight but NCEDS does not offer that ongoing service as it’s a ‘recovery’ service.”
Ms Middleton said she had agreed to come out of Newmarket House at a certain weight, but that she told NCEDS she would need help when she no longer had the intensive support of the clinic.
MORE: ‘Patients end up suffering’ - Anorexia service still failing patients, says father of teen who died in 2012
“I told them I cannot cope,” she said. “I said I’m not going to be able to stop so when I get down to that mark I’m going to need help to stop.”
Ms Middleton had some sessions with the dietician at the service, as well as a therapist, but the sessions were stopped when she felt she needed more ongoing, long-term support.
“But then I got a letter from my therapist to say it was the end of therapy,” she said. “She said at some point in the letter ‘I’m aware you need help but that’s not what we offer here’.”
Ms Middleton sought help from charities Beat and Eating Matters, but found her BMI was too low for the later.
“You’ve just got nothing between the really low end of the scale of help and hospital,” she said. “Unfortunately we’re playing with death. You have to get your body down to a weight which is dangerous and almost shuts down to get help, I don’t particularly want to get down to that.”
She said she would like to see not only more long term support but also step down facilities, so those in the middle ranges of needing help did not slip through the gaps.
“You can’t deal with life because you never get to try it,” she said. “Because there’s no one there to hold your hand. It doesn’t have to be 24/7 overseeing feeding but something in between, to stop people getting in the same situation again.
“They have no respect of age or the fact that, as an individual I have lived at a low weight for about 20 years and this was accepted by two senior consultants at Newmarket House. I was treated and spoken to like a child and if I was to dispute a decision I was told that was my eating disorder speaking - in effect closing any further discussion.
“In the final letter, they said my reaction to having help refused was due to long term ‘starvation syndrome’ preventing me from understanding their not wanting to help - this does not exist but again, puts down anything I have to say.”
A spokesman for Cambridgeshire and Peterborough Foundation Trust, which runs the NCEDS, said: “We cannot comment on individual cases.
“The Norfolk Community Eating Disorder Service, which is operated by CPFT, is a small and highly specialised service and patients referred to us are prioritised according to urgency of need and clinical risk.
“Eating disorders are highly complex conditions and while recovery is possible, research has shown that around 20 per cent of people with bulimia and anorexia continue to suffer chronically.
“We work very closely with GPs who provide patients with long-term support and care while there a number of third sectors organisations also offering highly effective counselling, support and advice.”