Eating disorder patients' lives at risk due to long waits for NHS treatment

Overstretched specialists forced to prioritise anorexia patients while delays of up to three years mean those untreated become more seriously ill

The lives of people seriously ill with eating disorders are being put at risk because they have to wait up to three years for NHS treatment.

Experts warn that specialist services are struggling to cope with a growing caseload and are so overstretched they have to prioritise patients with anorexia, because they are at greatest risk, ahead of those with bulimia - even though their condition is seriously affecting their lives.

Patients forced to endure long delays are at greater risk of serious damage to their health because it deteriorates while they are waiting. They also have a smaller chance of making a full recovery.

Some people wait so long they are forced to pay for help privately or get help abroad - in South Africa, the US and elsewhere - to tackle conditions that have the highest mortality rate of any mental illness.

Psychiatrists who treat people with eating disorders - often girls and young women - say NHS services are so inadequate that in some places patients who are very unwell have to lose more weight to qualify for treatment.

"Certain services only see people when they reach a certain level of severity with their eating disorder. People might be told that their weight isn't low enough to be seen, that they need to get sicker to get seen," said Ulrike Schmidt, professor of eating disorders at King's College London. "It's paradoxical. It's horrible for patients to be told that you have to get worse before you get any specialist help. That's soul-destroying and very frightening.

"Adults with eating disorders do often wait a long time; that can be more than six months."

Schmidt, one of the NHS's leading specialistssaid that at the south London and Maudsley NHS mental health trust where she works: "We try to prioritise those people who have anorexia nervosa, who really are very, very severely ill [and] are at risk of dying or coming to serious medical harm.

"That means that people who aren't at that level, including people who have quite severe eating disorders, such as bulimia nervosa or binge eating disorder, they really have to wait a long time. People with bulimia can sit on the waiting list for months.

"Being on a waiting list is pretty toxic. Their symptoms worsen. Anorexics lose more weight; bulimics can binge and vomit more frequently. And people offered treatment after a delay of several months may not engage with the treatment, perhaps because they have switched into a degree of learned helplessness."

Lorna Garner, the interim chief executive of Beat, the eating disorders charity, said: "Long waits are relatively common among people with eating disorders, and in some cases they can be life-threatening. One in 10 people with anorexia will die prematurely either through suicide or organ failure. So if there's a delay in treating them, that increases the risk of premature death."

Beat is receiving more critical calls from people who have been unable to get help from the NHS. "We often hear of people having to wait one, two and sometimes three years for therapy treatment."

Recent Beat research involving 435 eating disorder patients found that 41% waited more than six months after being diagnosed to start treatment, while 19% waited more than a year.

Norman Lamb, the former minister for care and support, said: "These waits are intolerable. Just as with cancer, it's just as important to speed-up access to eating disorders treatment. Both sets of patients deteriorate if they don't get early treatment."

The NHS needed to train and hire more psychiatrists "to eradicate this appalling practice of people being told in effect that they need to go away and get sicker and then we might help you", he added.

Meanwhile,Dr Carolyn Nahman, a specialist and spokeswoman for the Royal College of Psychiatrists, said the health of children with eating disorders destabilised much more quickly than that of adults.

The shortage of resources means in some places a very underweight child with a body mass index of about 15 is deemed not thin enough to get care.

Nahman said: "When they don't get treatment quickly, the risk of sudden death starts increasing. A waiting list is the same as a weight-loss list. While someone is waiting for treatment, they generally continue to lose weight and that can be dangerous. As their health deteriorates, their risk of collapse or a cardiac event, or risk of a sudden death, or other risk associated with starvation, starts increasing and their mental health deteriorates significantly, too."

Dr Max Pemberton, a specialist psychiatrist in London, wrote earlier this month that "in the eating disorder service where I work there is a two-year wait for psychotherapy. My colleagues and I are distraught".

Parents seeking help for a child with an eating disorder end up feeling "frustration but also worry and fear", said Garner. "You have this sense of disempowerment and that there's nowhere to go to get help," she said. "You know there's a service, but you can't access it, or not as soon as you need to, because you have this ridiculous merry-go-round of constant referral to one place and then another before you get to see the eating disorder specialist. And while that's happening, the person's health is deteriorating. That's also awful for the child, who needs help."

The Department of Health said it was tackling historical problems in eating disorders provision: "For years, services that treat people with eating disorders have suffered from underinvestment and haven't been prioritised by the NHS. We are putting this right. We are investing an additional £150m to improve the way these services work, with new money this year. And for the first time in the history of the NHS, we are introducing new targets so that patients have the same guarantees about treatment times they would for a physical condition."

The DH said it would honour a commitment first made by Lamb to introduce a maximum waiting time for people with an eating disorder. It will be introduced next year, the spokeswoman said.

Cries for help

The following accounts are examples of people who rang the Beat helpline with their experiences of waiting for NHS treatment.

• My daughter suffered age 12-14, had four good years then relapsed spectacularly when moving to university and was made to wait 10 months to get any help, which she had asked for and wanted. It was a nightmare to watch as she deteriorated, and when she got to treatment it was already entrenched and she was more resistant to change. The impact of the poor treatment when she was 12-13 years old as an inpatient makes her reluctant to trust treatment again.
• I have been waiting for therapy for 13 months and it is predicted to take another six until I am top of the list.
• Initially, we were booked in to see the specialist consultant for a much later date. However, my mum was very persistent and luckily a cancellation meant that an appointment became available within a week. Had I not been able to see the consultant that week, I may not have survived.
• My daughter's been ill a long time - since she was 18 and she's now 26. She's been in hospital nearly 70 miles from home for 21 months and the previous year was in for eight months and has been under section for much of that time. Had she had earlier specialist intervention, she might not be where she is now. I feel traumatised by that period and how things were handled. Financially, it's been a real strain. I've spent thousands of pounds on petrol and parking alone.
• I was not referred for specialist treatment until three years after I was diagnosed because I was told there was no specialist service in the area. I was just prescribed antidepressants. I only got specialist treatment when I moved to another area.

'I wasn't thin enough to get NHS care'

Kat Pugh has suffered from anorexia nervosa since she was 11. She sought help from the NHS when she had a relapse in 2012. But after waiting 10 months for an appointment and being refused treatment, she paid for private care. Now 26, she is stable and works for an education charity. She lives in Wimbledon, south-west London.

"I was diagnosed with anorexia nervosa but I'd always had a combination of trying to starve myself and then bursts of binge-eating.

"I have never been able to access the NHS system due to astronomical waiting lists and my own health not meeting the criteria, despite it being a disabling condition.

"In December 2012, I went to my GP and asked if I could get some help because I was really struggling. She put a referral letter in for me straight away.

"Over the course of 2013, things got increasingly and significantly worse - especially in terms of my mental health. I felt particularly vulnerable because my job got busier and more stressful. I was aware that I'd heard nothing back from the referral. It was about April when I started chasing it.

"By the time it got to July, I had a bit of a breakdown. I felt emotionally very unstable and I was fixating on the numbers on the scales. As well as starving myself, I was exercising a lot more and using laxatives and diet pills. I rang my GP to chase what was going on, but I had kind of started giving up on ever getting an appointment. I have a really brilliant GP, but there was nothing she could do. It was very frustrating.

"Having fought to get help over quite a long period of time, I was losing the will to get help with my eating disorder. Finally, in September I was told I could have an appointment in mid-October. By that time, I had waited nearly a year to get my appointment; my health had deteriorated and I had lost more weight. The insupportable reason is that with mental health there is no maximum waiting time as with other areas of NHS care.

"I had the assessment but afterwards I was told I didn't meet the really strict criteria for treatment. The criteria includes things like 'system or organ failure', which obviously I didn't have. Everyone knows early intervention is both cost-effective and saves lives, so it's completely contradictory that they are working off this model in this day and age. The system is so complicated.

"It felt like it was a case of 'not being ill enough, not being thin enough', and if you tell someone with an eating disorder that they don't fit the criteria, what's going to happen? So by the time of the followup appointment in November, I had lost even more weight but I still wasn't given treatment. After Christmas, I got really unwell again and I ended up in A&E in January.

"My parents stepped in and paid for private treatment. We came to the conclusion that the NHS wasn't going to help. For 14 months, I had outpatient help. I saw a therapist once a week and a dietician fortnightly. The therapist was a trainee, which helped keep costs down as she only charged £25 per session. The dietician was £105 per appointment. I was lucky they were able to support me; not everyone has this option.

"By the time I started this outpatient treatment, I'd had an eating disorder for 14 years. Why was it necessary to pay for help privately when I had a chronic condition? It would be different if they were treating a physical issue like diabetes or asthma.

"Why do we pay our taxes, which go to fund the NHS, only to get denied treatment when we really need it?"

As told to Nicola Slawson. Pugh is a volunteer young ambassador for Beat