Recently the ME community online had to deal with the sad news of three deaths, including one of its best-known and most loved activists, Emily Collingridge (right). There were also two inquests which reported in the last couple of months, those of Lois Owen who died in 2009 and Victoria Webster who died last year. All had very severe ME and, it appears, died of its complications (the immediate cause of Emily’s death will not be known until the inquest is heard later in the year). A major cause of Emily’s final deterioration was a hospital admission in late 2009, following a period in which her condition had improved somewhat; the environment in the hospital was clearly very unsuited to someone who was highly sensitive to light and sound and needed a low-stimulation environment. A further problem with British hospitals has to do with the medical and nursing professions: the fact that there is a substantial number of people within it who are uncaring, dismissive or abusive and it has led to many people with chronic illnesses becoming fearful or even phobic of hospitals. This simply should not be the case.
Last year, there was a book published by Jessica Kingsley Publishers titled How We Treat the Sick by Michael Mandelstam, which exposed abuse and malpractice in British hospitals. It was an excellent exposé of how hospitals treated elderly patients with a little bit of content related to younger disabled people, but it does not cover the NHS’s treatment of the chronically ill very much if at all. The journalist Christina Patterson has had a series of articles (, , , , ) published in the Independent this past week, her interest in the subject having been sparked by receiving inadequate care from nurses after treatment for cancer, which she spoke about in a Radio 4 broadcast. She concentrates on the quality of nursing and on what can be done to improve it, but also does not cover those who are subject to repeated, sometimes lengthy, hospitalisations, who see a variety of qualities of care depending on when they are admitted and in what circumstances.
I became interested in this as a result of hearing the story about Lynn Gilderdale in 2010; she had suffered from very severe ME (myalgic encephalomyelitis) from 1992 until her death by morphine overdose in 2008. She was entirely bedridden, was unable to speak or swallow, was in terrible pain (hence the morphine) and suffered persistent nausea, had osteoporosis and various endocrine disorders, and also had a drastically impaired memory, although this improved in the last five years or so. She required between 50 and 60 admissions to hospital, during which her mother remained with her, partly because she was terrified of hospitals as a result of traumatic, abusive experiences during two admissions in mid-1992, and partly because her mother needed to interpret the hand-signs she used to communicate (patients, including adults, often need a relative with them when in hospital for interpretation or advocacy purposes, but some staff fail to understand or accept this, as a senior nurse in Cambridge demonstrated very brutally to someone I know the night before I wrote this).
The main problem for Lynn, and many other severely-affected ME patients, was the widespread view in the medical profession that ME did not exist, or was a misnomer for a psychological or behavioural disorder, or was at worst a mild fatigue syndrome which could not possibly be as severe as Lynn’s condition. A well-known ME specialist diagnosed her with “hysteria” and handed her over to a psychiatrist, saying he had never seen anyone that ill or anyone fitting like Lynn did; a consultant on a psychiatric ward at Guy’s hospital lied to the Gilderdales that he believed ME was a physical disease, but did nothing to treat it and allowed Lynn to be abused by patients and staff. There were serious failures on subsequent occasions when she was admitted, including one where a surgeon who had performed a Hickman line replacement did not believe her when she indicated that she was in distress after the procedure; it turned out he had punctured her lung, turning what should have been a minor procedure into a life-threatening emergency which put her on life support, and resulted in a three-month hospital stay. On another occasion Lynn, who was immune-compromised and very sensitive to light and sound, was refused a side room because “protocol had changed” and had to stay on a main ward during an outbreak of a vomiting and diarrhoea bug.
Lynn was not alone in suffering such appalling treatment, and ME is not the only condition whose sufferers are affected in this way. The most vulnerable are those with rare or poorly-understood chronic conditions or those with controversies attached to them, like ME. While being wary or afraid is hospitals is not uncommon (they are, after all, places where people die), an awful lot of people with chronic disabling conditions have had repeated traumatic experiences and are afraid or even phobic of hospitals. I have a number of acquaintances with the connective tissue disorder Ehlers-Danlos syndrome (EDS), also known as Hypermobility Syndrome, the most obvious symptom of which is weak, hypermobile joints which dislocate easily. The most severely affected require full-time wheelchair use, tube feeding due to gastroparesis, and sometimes mechanical ventilation; some have lost their ability to speak and others have developed paralysis because a collapsing spine injures their spinal cord. A great many of those I know had difficulty getting diagnosed, and a long period in which many doctors suggested that their problems were “in their heads” and treated them with disdain and disbelief led to a permanent fear of hospitals, often leading to a dangerous reluctance to go to hospital, or stay there, in critical situations; the misdiagnosis can also lead to critical situations that would not otherwise have happened. A friend of mine recently wrote an article about her 13-year-long struggle to get her condition (which turned out to be EDS) recognised, during which she was referred to a team in London which is notorious for promoting psychological explanations for demonstrable physical conditions, and told to ignore her symptoms and not to associate with disabled people online or in person as it would make it look like she was “learning to be disabled”. She also noted that many doctors did not understand the difference between genuine conversion disorder (which the patient has no control over) and malingering.
Any campaign to improve nursing care and conditions in hospital is incomplete if it does not mention the terrible toll it takes on people with rare and chronic conditions. People have died, people have had their health permanently ruined, others have acted in ways that harmed themselves because of wrong advice or fear of doctors, nurses or hospitals, and others have committed suicide, wholly or partly because of trauma from medical abuse. The people who are campaigning on NHS standards should talk to some of the people affected by this and include it in their campaign. The charities concerned with these conditions, such as the ME Association and Hypermobility Syndrome Association, should also make campaigning for improved hospital conditions and against abuse a major priority. Major demands of the campaign should include:
- Appropriate units for patients whose conditions require a low-stimulation environment, whether in terms of noise, light, chemicals or anything else. This should include separate units in major hospitals; such patients should have priority for side rooms in others.
- Less credence should be given to psychological explanations for physical symptoms when a particular group of doctors cannot explain them; a diagnosis of hysteria or conversion disorder could lead to prejudice against them whatever they present with in the future.
- Patients’ knowledge of their condition, and of what works and what does not in their experience, must be respected.
- Staff should act rationally and not capriciously, share relevant information with each other and not act against each other, such that a decision taken by one team should not be countermanded by another with an excuse like “Dr so-and-so is not here now”.
- Patients should have the right to have a relative stay with them if necessary.
- Charities should act in the interests of those they purport to represent, and not endorse harmful advice from “on high” or useless research
- Medical students must be educated about “rare” disorders like EDS, such that they could spot it, even if they lack the resources to treat it (or its complications) adequately. This is vital to ensure that, for example, parents do not face wrongful accusations of harming their children when they present with injuries or other complications from the condition.
- There must be a robust complaints procedure so that staff who lie to patients or their guardians or are cruel or dismissive are subject to appropriate sanction, or dismissed
- Medical and nursing students must be educated about the rights of their patients to be treated with respect, believed about their symptoms and concerns, not subject to cruelty of any kind, and not made to fear hospitals, medical staff or medical treatment in the future.
- Patients should not be prevented from communicating with the outside world, including by using the Internet. If they cannot bring their own (e.g. if mobile reception is lacking or its use is dangerous), the hospital should provide it, and if not for free then at affordable rates (British hospital internet access is often at exorbitant cost to the patient). This includes most patients with mental illness.
- All the demands related to improving care for the elderly and others with disabilities, such as those related to toileting and feeding, apply to this group of patients equally.
Hospitals, clinics and other medical facilities should be fear-free for patients as far as the behaviour of the staff is concerned — the kind of behaviour my friends tell me they have witnessed from doctors and nurses (and members of related professions, including a particularly unpleasant tale one of my friends told me about an optician) would get a minimum-wage shop assistant sacked. There must be no excuse for highly-paid professionals to behave in a way that would be unacceptable for a much less skilled, and less well-paid, worker. There needs to be a concerted campaign for fear-free healthcare, care that does not worsen anyone’s condition and does not leave people who will need to use the health services on a regular basis traumatised and fearful to do so.
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“Fear-free Healthcare” was originally published on Indigo Jo Blogs — http://www.blogistan.co.uk/blog/ — on 15th April 2012. Republished from Indigo Jo Blogs with permission from Matthew J Smith, author. All rights reserved.
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