The Learning Disability Mortality Review was published this week and it has largely gone unnoticed in the press and news. While we flaunt the successes of our health service, and describe it as the “the envy of the world“, we have ignored the fact that there is a serious problem with how the NHS treats one of the most vulnerable groups in our society. The report looked at those with learning Disability dying in NHS care and found that in about one in eight of those deaths neglect, abuse or incompetence had “adversely affected” the care that the individual had received.
The report makes harrowing and upsetting reading. It is clear that this group of people are being sold short by our health service, that they are often felt to have lives not worth saving. There are reports of staff failing to recognise the worth of the individual and thus they are discriminated against. This utilitarian view of life is very dangerous and particularly dangerous, in a system such as the NHS, where the client is not the patient but the state itself. The state will have the tendency to value some lives are more productive than others, more valuable than others, and thus worthy of more attention. This group of people find themselves at the bottom of the pile when priorities are being drawn up. When the calculus of how much someone is worth is reckoned their values – the pleasure they bring to their families, the love they express, the friendships they make – don’t weight well in the scales and they loose out.
Staff recognise this and start to behave accordingly; they care less for the patients and come to view them as obstacles in the path to giving better care to more deserving patients, and, in extreme cases, unworthy of using the resources which could be better used by someone more valuable. All of this has echoes of the film “Dasein Ohne Leben ” (“Existence without Life”), the 1942 Nazi propaganda film which was intended to soften the public’s opposition to the euthanasia, or murder, of the physically and mentally handicapped.
Although this group of people almost certainly suffer the most from this neglect they are unfortunately not alone. When I was working I was repeatedly shocked by the contempt that medical and nursing staff could express for patients with dementia seeing them as nothing more than “bed blockers” who were misusing scarce resources. Recent scandals about breast screening errors again show that ageism is still prevalent. Older women have higher risks of breast cancer but screening is avoided because it is “not worth it” in this group. Were the NHS an insurance system, as it was initially intended, then people who had been in the scheme longer, and contributed more, would expect better dividends not a scheme which rewards their involvement by reducing their entitlements.
But advanced age is not necessary to be a victim of this type of calculation. The high profile cases of severely disabled children being removed from their parent’s control causes further concern. In these awful cases, the parents asked for nothing extra from the NHS other than to get out of the way and to let them try what they could for their babies. Their hopes for their offspring were almost certainly futile but it may have helped the parents to know that they had done all that was humanly possible for their sons. But the system felt is was important, having assessed the importance of these infants lives, to stop the parents and other systems doing what the might lest they squandered resources.
When systems become too large they often become inhumane. When the patient and their family is not the focus then the system operates on economic principles of value for money. It stops being an insurance scheme to protect us form the high costs of health care, by aggregating risks, and becomes a system to ration care. In a rationing system the vulnerable groups of the disabled and elderly always loose out particularly in times of scarcity. As the NHS becomes increasingly unable to meet the demands put upon it it will start to ration ever more strictly. Then it matters not a fig, whether you paid your taxes diligently, or worked productively, or are a valued member of your family and community, if you are deemed too expensive and too unproductive then your services are going to be poor. You will get the minimum that can be offered if a callous system allow even that to happen.
Our sons and daughters, and brothers and sisters, with learning disabilities are not lesser people than us. They have every right to care and we should feel ashamed that a system what we hoped would provide universal healthcare is failing to do so for the weakest and most vulnerable of our fellow citizens.