Access to treatment for Eating Disorders: Money or mindsets?

A Manchester health trust apologises for turning away Hannah Pearson aged 23 who is suffering from serious bulimia nervosa. Because she is not ‘thin enough’ nor ‘bulimic enough’ she doesn’t meet the criteria for an urgent appointment. She is on a waiting list for treatment and the Trust says it does not have enough funding to meet demand. Today I spoke with a few colleagues who are giving everything to help people with eating disorders in the NHS.  It is the same old story about waiting lists and only being able to help the sickest and the most difficult cases for anorexia, bulimia and binge eating associated with severe life-threatening obesity.

Everyone is a deserving case whatever their weight.

I set out my stall. I am passionate about getting people the right treatment and I spend my life trying to help people with eating distress. But I don’t think that anyone is thinking straight when they make complaints about long waiting lists as if it a problem that can be solved with just a little more dosh..

I hear that there are promises to step up to getting more help for eating disorder patients. The promise is great and the problem is HOW.  If there was enough money to both treat all patients in need and to pick up early cases before they get sick (clearly the best option) we would need £ BILLIONS to meet this demand.  Every year.  These £ BILLION would be spent on appropriate mental health prevention programmes; a whole set of new buildings for Camhs and adult services;  specially trained nurses, psychiatrists and psychotherapists; eating disorder qualified nutritionists or dietitians who know how to talk to patients with eating distress; and in/day patient places in hospitals.

Oh; and we need thousands of ancillary staff on permanent call to stop patients from doing the things that anorexia makes them do, such as water loading to deceive their weight or pulling out a feeding tube.

Because sadly, many Ed patients who are very ill get their treatment but they fight tooth and nail against their helpers.  Sometimes physically.  Eating disorder patients deceive their carers and helpers, aggress against therapists and pretend to comply with meal plans that keep them safe, refusing to embrace the idea of change even if they want to.  This is the nature of this terrible illness. One young sufferer getting the best possible help at the Maudsley told her carers ‘I would rather be happy at 35 kg than unhappy weighing more’ – and die she did, of the complications of her disease, having cost the NHS a pretty penny for a treatment that failed her. 
Sufferers cannot be blamed (so no trolls please),  because anorexia and sometimes bulimia are forms of madness with vicious, intrusive thinking making a person rather stay ill or be dead than be– in their own minds anyway – ‘fat,’ where fat is often just a delusion of the illness.

So eating disorder treatment is thwarted by the illness itself, where beds and access to help is blocked by a never-ending revolving door of need and money flowing out like a river. Services respond by letting sufferers go – even though they clearly need more help, possibly for a lifetime. But there are also other needy people pounding at the door of the money tree.  One might think that this could be solved by finding better treatments, but even this is not a question of spending more money. We are spending plenty of money and not getting as far as we would like.  

We do better with the overeating disorders like bulimia. But, despite all our efforts and our real-time experience, despite millions of pages of well-funded research, there is no known treatment guaranteed to work for anorexia. There never will be.  People with anorexia need to try everything before they find a fit; most will eventually find a fit and recover, some do it by themselves, some never get well.  Actually, most sufferers recover in time although the illness leaves a lot of scars. I never lose hope nor put my head in the sand that there is a magic bullet and that one day we will find it.

We cannot blame the poor old NHS for failing the public. There are too many people needing help. The NHS is groaning under the weight of having to provide medical and social care for an ageing population, treating drug addiction, confronting cancer. The NHS is a victim of its own success in keeping us alive. Mental health problems are a feature of affluence and no one wants to make us all poorer.  A small increase in funding will do nothing at all.

Because there is no point providing access for help if the people who deliver it just aren’t there.  It takes half a generation to get specialist psychologists, psychiatrists and health professionals like nurses and dietitians with the right academic training; who know what they are doing with people who are at war with food. Money won’t get them off the production line any time soon. How will we find (and fund) the places to create the 5000 new clinical psychologists (7 -year training) and 1000 new eating disorder psychiatrists (10-year training) to fill the provider gaps.  This is always going to leave big holes in service provision as mental health suffers spend time bonding with a healer and then the healer needs to go elsewhere.

So what we need, at the very least, is a conveyor belt of super- effective therapy for eating disorders and other mental health issues, so that new sufferers can enter the system fast as other people leave it, but mental health is not that simple to address.

Activists and journalists always point a finger somewhere for a failure of what they think is a lack of care, lack of attention, lack of priority or failure to spot early cases.  Even experts can not spot early cases because dieting is common. Eating in your room or being angry and withdrawn are normal adolescent behaviours. Behaviour that we used to call quirky, such as becoming a vegetarian, is both a symptom of an eating disorder and also mainstream. Activists make a big noise about not enough money being spent (true; but there will never be enough) and that we don’t know enough about treatment – which is a dangerous falsehood.

The real truth is that people who care about eating disorders (thousands) have spent their lives and their professional experience researching what works for eating disorder therapy and learning from the real people who enter our services.

When it comes to accessing treatment, I say; yes, it’s hard, but you are competing with a cancer case, a child with autism, a patient with post-natal psychosis and an alcoholic . You don’t just need to go and see your GP.  If people are worried about their loved one, one has to ask why not turn to the Independent sector where there are many professionals with varying levels of training ready, willing and able to offer support.  The argument that it is ‘costly’ doesn’t hold water. What price can be put on someone’s life? A proper assessment costs £65 with us at least. Therapy can cost less than an annual subscription to a mobile phone or your subscription to Sky.

6 months of valuable therapy at whatever the costs can give a person back their life. I am shocked that the sufferer here did not reach out to the private sector – if she did the article in The Times doesn’t admit to it; it just targets the NHS again, which is not helpful.  Until we accept this, we are all tilting at windmills and not thinking straight.