Charlie Gard and NHS versus private care

A handmade poster hung on the railings of the Royal Courts of Justice in London. It is decorated with lots of green and clear glass 'jewels', some arranged in two heart shapes. There are pictures of Charlie, the words "Save Charlie Gard" and a map of the world with the words "The world stands with Charlie Gard" above and below.So, the tragic story of Charlie Gard, the terminally-ill baby boy whose parents have fought a legal battle to stop doctors at Great Ormond Street in London from turning off his life support, has drawn to a close; his family spent their final moments with him in a children’s hospice today and he died this evening. The American neurologist who had claimed to have treatment to offer that could have helped him turns out never to have examined Charlie and to have had a financial interest in the treatment which, at this stage, could not in fact have helped. Melanie Phillips has written a series of interesting articles, such as this one, condemning the American right-wing ‘mob’ which has been busy condemning the NHS and the doctors involved for being motivated by a desire to save public money, which (unusually for her) are worth reading. It is worth exploring the paradoxical relationship the American pro-life Right have with the world of disability, and their attitudes towards life itself in contrast to having to pay for anyone’s healthcare. (Update: Charles Arthur, former tech correspondent with the Guardian and Independent, has written this piece on the same misrepresentations being made by the campaigners.)

It has long been a myth on the American Right that a single-payer public health system like the NHS would ration care strictly on a financial basis, making decisions on who lives and who dies based on cost. In the 2008 presidential election, John McCain’s running-mate, Republican former governor of Alaska Sarah Palin, suggested that Professor Steven Hawking might be left to die by an NHS “death panel”, when in fact he has used NHS hospitals all his life. The claim is not entirely untrue, as some treatments have been rationed on cost or cost-effectiveness grounds, including new and expensive drugs (mostly for cancer) and some second-chance cancer treatments for people who have already been treated once and relapsed, but for the most part, if you have a treatable disease you will get treated and the cost of your medication will be heavily subsidised (if you have certain specific conditions, entirely subsidised). The NHS is not without its critics or its problems, but it’s something many of us are proud of and do not wish to see sold off or dismantled. Our answer to problems in the NHS that lead to bad care or rationing is usually more money.

My involvement in disability activism came largely as a result of a prominent news story involving someone with Myalgic Encephalomyelitis or ME in 2010, and the ME activist community is strongly linked to other chronic illness communities. The case of Justina Pelletier, who was held in a psychiatric unit at Boston Children’s Hospital for more than a year because doctors there disagreed with doctors in her home state about her diagnosis (she had been diagnosed with mitochondrial disease, similar to Charlie Gard’s although obviously milder; they suspected a psychosomatic disorder, a suspicion which has bedevilled many an ME patient), was widely debated on the British ME social media platforms. The people who stood up for Justina and her family against the arrogance and cruelty of the Boston psychiatrists were the pro-life Right, not the liberal Left, who have a long history of siding with the ‘experts’, i.e. doctors, in such cases — as had been the case with Terri Schiavo, which brought about the split between pro-life conservatives and liberal hawks that had made up the Bush coalition before the 2008 election. In the UK, I noticed that both the liberal and Tory presses and the BBC took the side of the psychiatric lobby over the patients, eagerly recirculating stories of death threats sent to researchers who supported a psychiatric origin for ME and portraying ME sufferers who believed the origin of their illness was a virus as ‘nutters’ or liars (implying that, for example, that as they clearly had enough energy to harass Simon Wesley and friends, they should have had enough for work, this also being the time when the reforms to Disability Living Allowance were first being threatened).

Disability activists are often perplexed at the spectacle of American conservatives who are opposed to any kind of public funding for health and social care leap to the defence of a disabled person when their life is under threat. Someone asked me why “forced-birthers” do this and the best I could offer was that “they’re for life after birth as well as before, just as long as they don’t have a tax rise to pay for it”; she pointed out that the same people are also in favour of police shootings, as long as the shooter isn’t Muslim. The answer could be simple partisanship: they regard the medical profession as part of the ‘liberal’ educated class, therefore “the enemy”, while ‘rationalist’ (if not always entirely rational) liberals rally round the medical profession and brand anyone who doesn’t accept their authority at face value as anti-science fools. Personally, I regard defending sick or disabled people against doctors with pet theories that abuse their position as neither a left nor a right issue; history shows that such abuses can be committed by people of any political views, but a professional position always helps.

I’m sure Melanie Phillips has spent time in the USA and knows what healthcare there is like, and was before the Affordable Care Act (which many Americans apparently support, while opposing ‘Obamacare’, unaware that they are the same thing): that many people simply cannot get healthcare because they cannot afford insurance, or because insurers will not entertain them because of pre-existing conditions which mean they actually need the care more than someone who can get insurance. She also knows that people go bankrupt to pay for medical treatment and that if you have treatment forced on you in an emergency (e.g. because you’ve been stabbed in the street), you can be hit with a huge bill. Their system denies home care to disabled people who need it, resulting in their having to enter a nursing home (which often costs the state more, but does not give the impression of a ‘handout’) while both industry lobbyists and trade unions resist the closure of large long-stay institutions which deny disabled people, especially those with learning disabilities, freedom. Will Melanie Phillips defend the NHS as robustly when the Tory party seek to slice bits of it away and sell off whole chunks of it (including to American healthcare companies such as those who profit from the American insurance-based model) as she does when ignorant Americans attack it as being run by penny-pinchers with no regard for human life?

As for the rest of us here in the UK, I have long believed we should distinguish between the medical profession and the NHS when we talk about failings in healthcare. The NHS is a funding mechanism and model; the health service itself is made up of institutions such as hospitals, clinics and civil service departments which use public money to pay staff and buy and maintain equipment to deliver care. We should be careful in talking about “the NHS” when talking about attitudes or behaviours that damage people’s lives or health and which are just as prevalent in private healthcare as in publicly-funded healthcare; they are the same medical and nursing professions and trained in the same colleges. We should talk of specific hospitals, specific trusts or the medical or nursing professions or management, as appropriate, and when we see failures such as neglect leading to patient deaths attributed in the media to “the NHS”, we should protest and demand correction. It is widely understood that the privatisation of the NHS requires the population to be dissatisfied with its performance and to blame it for the failures of specific individuals, trusts or the government; all attempts to foment that discontent have to be resisted, or we will wake up with a system which delivers less care, costs more and benefits its private owners, not the people.

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