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In the Eating Disorder Unit

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The Parliamentary and Health Service Ombudsman found last month that Averil Hart, who had anorexia nervosa and died in December 2012, was failed by ‘every NHS organisation that should have cared for her’. ‘Sadly these failures, and her family’s subsequent fight to get answers,’ the PHSO report says, ‘are not unique.’

In October 2009 I went to see my GP to ask for help with my anorexia. A few months earlier, I’d completed 30 sessions of therapy, and improved; but with great humiliation and anxiety, I had to admit that it hadn’t been enough, and things were getting worse. The advice was not encouraging. Since I’d already been given the treatment available in my borough, and my weight was only just within the ‘anorexic range’ (below a body mass index of 17), I was told I’d be better off registering with a university GP with access to better mental health services.

Reminded of the endless assessments to nowhere of previous years, being made to feel like I wasn’t thin enough, or wasn’t crazy enough, or was too crazy, or wasn’t consistent enough in my craziness, I resolved instead to keep fighting on my own. A few months later, even more ashamed, I was at the university GP. I had lost more than a stone. In April 2010 I was admitted to a daycare programme, but I was already falling downhill faster than I could clamber up, and after a few weeks my doctor referred me for inpatient care, warning me that it would be a long wait.

The hospital I was referred to had (and still has) 20 inpatient anorexia beds. Thanks to NHS ‘restructuring’, these serve five London boroughs, as well as parts of Essex and occasionally elsewhere in the country. When I was treated, only two beds at a time could be allocated to male patients. A patient had died the year before I was admitted; another died shortly after being discharged while I was still being treated there; and a third ex-patient, a close friend, killed himself two years ago.

Weeks before I was admitted, I was told that my heart and kidneys were at risk of failure. I was ordered to stay in bed as much as possible, to avoid walking or taking stairs, but at the same time I had to make it to two appointments a week at two separate hospitals, one for blood tests and one to be weighed and checked up on. One week at a weigh-in, I was told that I had been at the top of the waiting list, but the person below me had lost weight, so I had been moved down. When a blood test suggested my organs were failing, I was told to go to A&E and ask to be admitted. I was kept on the acute ward for a couple of days, where I was vaguely monitored and then allowed to discharge myself. By that time I had lost everything – my job, my degree, my relationship, all facets of my ‘normal life’ – and become suicidal.

By the time I arrived at the eating disorders unit in August 2010, my BMI had dropped below 12, indicating ‘serious risk of death’. My memories of the first few days are hazy, but I know that for much of the time there was no doctor on site. I refused to eat or to drink the squash offered to me, and was told that I couldn’t have water because there was no dietician present ‘to prescribe it’. I became delirious, and blood tests confirmed that I was in kidney failure. I was taken by ambulance to a different hospital, where the exasperated A&E doctor, confused as to why I had been brought there if I was already in hospital, tried to discharge me, despite my nurse escort explaining that they didn’t have the equipment to care for me on the EDU. Another doctor intervened and admitted me for the night. The following day my heart and kidneys failed. My blood sugar was below 1mmol/L, and I was clinically dead for eight minutes.

I spent three weeks in critical care. For a while I wasn’t expected to survive. My sister was called home from a holiday to say goodbye to me. I am lucky not to be permanently physically disabled. I spent a further five weeks immobile on a cardiology ward which had recently experienced dramatic staffing cuts, and often had to wait for hours for help with basic care. On one occasion, my mattress deflated, leaving me with the metal bed jutting into my back. It was only when a friend showed up for a visit and found me in tears, trying to pull myself off the bed, that it was dealt with. One nurse refused to help me turn over, telling me I had done this to myself. Another, after accidentally bursting my catheter bag and covering me in urine, told me she didn’t have time to clean it up and left me lying in it till morning.

There were ongoing conversations between the eating disorders unit and the medical ward about whose care I should be under (and therefore who should pay for it). As soon as I could stand and walk a few metres with a Zimmer frame, a meeting was held to discuss moving me. The physiotherapists and EDU staff, who were not equipped to care for me fully, recommended that I stay on the medical ward until I was fully mobile, but I was discharged in a wheelchair the next day and taken back to a locked ward.

Patients below a certain weight were allowed out once a day, to sit on a bench outside the ward for 15 minutes, but only when a nurse had time to take us. There were very strict rules, many of them humiliating, and often harshly enforced. When I was told I wasn’t allowed to do my physiotherapy exercises, I argued back, and was picked up and slammed to my bed. A nurse broke the arm of another patient, but avoided legal repercussions because the patient, like many with severe anorexia, had osteoporosis. My belongings had been put in a damp storage room, and many of them came back ruined and mouldy. For the first few weeks I felt like I was in prison. I had severe flashbacks of intensive care and of my mother’s death years earlier, but the overstretched staff didn’t have much time to support me, and I was often left crying on my own. Sometimes my tears were taken as evidence of ‘non-compliance’.

The hospital itself was old and seemed to be in the process of being shut down around us. Half the wards were empty, including the one opposite – a strange sight to those of us who had nearly died waiting for a bed. In winter, when it was too cold to be taken to ‘the bench’, we would instead be taken down another, deserted corridor, to sit for 15 minutes in a disused waiting room. When the five-bed rehabilitation house for patients leaving the inpatient unit was threatened with closure, doctors started to send patients there at a lower weight than advised, to secure its funding. Funding applications had to be made for each patient every two weeks, and I remember at least one patient being discharged suddenly and prematurely, because she had reached a weight beyond which her Primary Care Trust wouldn’t pay for treatment. Others, including me, had to prove that we weren’t ‘chronic’ cases and therefore worth funding. The ward was designed for patients who had already begun recovery, and would be healthy enough to engage with therapy, but it mostly dealt with early stage ‘refeeding’, which several doctors told me should be done in medical hospitals.

Some of the help and therapy I eventually received was excellent, but as much as my recovery was supported by the NHS, it was also fuelled by my determination never to have to rely on it again. As I reached a healthier weight, less help was available to me, which often leads to relapse. The continual need to fight for help exacerbates an illness that is often fuelled by shame and self-hatred. I was lucky enough to be able to get private treatment towards the end of my recovery, but most health insurance policies will only cover 28 days of inpatient care – far less than is required to treat most cases of anorexia. The hospital I was in cost £750 a night, not including therapy or consultations.

NHS England has claimed, since the inquiry into Averil Hart’s death, to have improved its service provision and waiting times for people with eating disorders. But as far as I am aware, anorexic patients are still just as at risk of falling into the gaping hole between gradually eroding ‘medical’ and ‘mental’ health provision.

The website of my former mental health trust tells me that ‘there is an exciting new vision’ for the hospital I was in. Two-thirds of the site is being turned into housing, an unspecified portion of which will be ‘affordable’. The ‘poor quality mental health wards’ will be replaced with a ‘new purpose-built inpatient building’, but nowhere does it say anything about an increase in beds.

Comments

  1. cgo says:

    This is harrowing. A number of the problems you experienced (closed wards, resource shortages etc) might be placed at the feet of deliberate underfunding by a government that does not value the NHS. However, the horrendous failures in providing a basic level of care for your condition are astonishing. Some of the behaviour of the people appointed to care for you is appalling, and must be investigated.

  2. Guernican says:

    Bloody hell, this is harrowing.

    I hope it’s of some solace to hear that you’re part of this “opportunity” for private enterprise that Mr Hunt is so keen on.

  3. whisperit says:

    Thanks for posting this story, upsetting as it is. Up to my recent retirement, I had worked in the NHS for most of my career. In the last 6 years, I was part of a community mental health team, set up to assess and provide mental health interventions for less seriously unwell patients.

    In that time, I experienced how care became increasingly de-personalised, as rigid protocols and database-friendly “metrics” replacing humane judgements about what care was right for individual people.

    My colleagues throughout were caring and committed people, but as waiting times and throughput grew in importance, in order to provide compassionate care, we had often to deliberately ignore management guidelines. For example, we had instructions to limit an intervention to a maximum number of sessions (six, or eight, say). If a patient had not improved by then, they *had* to be referred on. However, this would usually mean a lengthy hiatus as the patient would be placed on an internal waiting list. This was fine for the “metrics”, as this internal waiting list wasn’t counted, but for the patients – precisely the ones who needed more intensive support – such an interruption in care might be disastrous. It left us with an impossible, daily, dilemma – to surreptiously continue our sessions and risk a growing waiting list and disciplinary action or to follow protocol, knowing that our patient would deteriorate as a result.

    One result of having to cope with the chronic stress produced by this system was to adopt a mechanistic view of oneself and one’s patients – we were just parts of a system. To consider our own compassion or our patient’s needs was just too difficult.

    The primacy of financial cost, of “best value” and of being able to boast about “treating more patients than ever before” has led to our losing sight of why we are doing this work in the first place.

  4. M.G. Zimeta says:

    This is a devastating read. Thank you for sharing with such courage. I wish you a strong recovery.

  5. MartayShremple says:

    As has already been said: what a harrowing read. I’m so sorry you’ve had such a horrific time in just wanting, and needing to be treated for what is such an awful condition. Unfortunately, apathy within the NHS appears to be prevalent – on a much less harrowing, but nevertheless unacceptable note, I recently visited my very elderly mother in hospital on a daily basis to often find an array of discarded medical detritus either on her bed, the floor or her bed tray – one of which was a receptacle for men to pee in, despite it being an all-female ward. She was once left in a blood-stained gown, where the nurse attempted, and failed, several times to insert a cannula, which also left my mum black and blue and with a right hand four times its usual size and incredibly painful. I can only imagine the humiliating and distressing times you experienced were of a magnitude far worse than those I’ve just outlined, which, in one of the richest countries in the world, in the 21st Century, absolutely beggars belief. I wish you a strong and continued recovery – you were very brave to share such a traumatic experience.

  6. Chrisdf says:

    Anorexia is a devastating condition. I wish you continuing and lifetime-sustained recovery. However, Tory policy on the NHS is to set exigent budgetary and performance targets ever higher until the patient itself is reduced to a final state of debilitation whereby privatisation will be generally accepted as the only solution. This, despite a much-trumpeted programme of “extra funds”, and in a grisly totentanz mirroring the anorexia pathway, will allow Tories to claim that despite being surrounded with plenty, the NHS starved itself to death.

  7. DrVanini says:

    Though I never took a special interest in eating disorders, I worked – until just before the internal market reforms – in a couple of good teaching hospitals that did. I cannot imagine that anything like this could have happened then. The NHS was not perfect but it was cost-effective and medical morale was generally high. Both features have been destroyed by the bean-counters and in London especially, everyone in the generation before me seems to be counting the days until they can retire. When they go, things will probably get even worse. At a pinch, you can treat emergencies and do a lot of surgery without much continuity of care but not psychiatry or the more psychosomatic bits of medicine. For most patients, it also helps if your treatment team are very fluent in colloquial English. Not all overseas doctors are. Having said that, severe Anorexia Nervosa does not always respond even to the best treatment and not all deaths can be avoided. Deviousness is often part of the problem. One patient earned a place in my memory by packing her vagina with coins to conceal her weight loss until one day, they fell out.


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