Some notes on recent ATU publicity
Last week two separate stories about people with learning disabilities were in the news. One was that a woman had died following the extraction of all her teeth at a hospital in Worcester which has a history of performing tooth removals beyond what patients’ families had consented to (e.g. removing all instead of just a few). Also, the parents of two of the autistic people who have suffered long-term captivity in Britain’s mental health units gave testimony in Parliament to the Joint Committee on Human Rights about the nature of their children’s treatment and what led to it (Jeremy, father of Bethany from the File on 4 programme, and Julie Newcombe whose son Jamie was held for 19 months following a change of medication and inappropriate treatment from carers. Two new articles by Ian Birrell about this issue were published in the Daily Mail over the weekend: one about Bethany whose father is supposedly “suing the NHS” and one about a woman with Asperger’s syndrome who has been held in various hospitals since she was 14; she is now 26.
About the teeth removals: I know a family whose daughter has autism and learning disabilities and has had to have all her teeth removed in two stages about four years apart after they decayed and broke because she was unable to tolerate going to the dentist. On both occasions a general anaesthetic was required. It does appear that her quality of life improved on both occasions as teeth that had been causing her pain were removed. Obviously, without any teeth, you are restricted in what you can eat and it does not appear that they are considering dentures for her, but for some people that is preferable to constant pain. However, nobody should be dying from this and if there is a persistent pattern of going above and beyond what a family had consented to, let alone tricking consent out of a patient’s guardian by saying “here, just sign this” when what they are signing agrees to more than what has previously been discussed, clearly this reflects an attitude of arrogance and disdain for the person whose welfare and rights are supposed to be paramount. Rachel Johnson’s death is still under investigation.
As well as appearing at the Human Rights committee last week, Jeremy announced that he would be taking legal action to establish that his daughter Bethany’s treatment (in which she is kept in a single room, fed through a hatch and not allowed to have her family in the same room, among other things) violates her human rights, and is being supported in this by Mencap. This led to a lot of criticism on social media and speculation about why Mencap took on this case and not others; they have a history of staying away from legal battles but showing up in the media afterwards and claiming they always supported the families involved, and also run institutions which rely on government contracts and abuses have been exposed in some of them. Mencap’s conflicts of interest are well-known, but let’s not forget that Bethany’s treatment has been among some of the most egregious of anyone still living and Jeremy has said on Twitter that he has not had a queue of other organisations offering free support or pro bono legal representation. I get the impression that some people just resent someone getting support from a big charity when others, or theirs, did not.
The Daily Mail’s article last Sunday proclaimed that Jeremy was “suing the NHS for ‘torturing’ his daughter”. This is misleading. You cannot “sue the NHS”; you have to sue an NHS trust or body such as (in this case) NHS England. The legal action is also against Walsall Clinical Commissioning Group (CCG), Walsall borough council and St Andrew’s Healthcare which is the charity that actually runs the hospital where Beth is being held. It’s ironic that the Daily Mail is cheering on a lawsuit that is based on human rights principles given that they largely treat the HRA with absolute contempt, but the reference to “suing the NHS” is part of how the Mail softens up the public for the dismantlement or privatisation of it by constantly reminding us that the NHS is crap. Actually, it’s not crap; it’s why we have free healthcare and without it we would all have to pay for insurance which could deny us cover because we might require treatment (e.g. because of an existing condition), as is common in the US. The NHS lacks enough mental health care and relies on St Andrews as well as private units run by a set of profit-making corporations, mostly based abroad (Cygnet, Priory and Elysium being the major ones) because successive governments have allowed it to be run down and wards to be closed, one after the other, as if this is a good thing in itself. These are political decisions.
Ian Birrell’s other article last weekend was about Jade Hutchings, a 27-year-old woman with Asperger’s syndrome who was hospitalised at age 14 after a suicide attempt at school triggered by bullying. She has also been transferred from hospital to hospital all over the country (St Andrew’s, Bath, Cambridgeshire, Wales, now Nottinghamshire) and unlike Bethany, she received “decent treatment” during her three-year stay at St Andrew’s and at her subsequent placement, at an autism unit in Bath, she was allowed trips abroad. However, she was then transferred to “another secure unit outside Cambridgeshire (sic) where, her parents said, she was locked for weeks in a secluded attic room with just a television and rubber-sheeted bed – and clad in a rubberised gown”. However, the article does not say why this took place. The only other mention of Jade Hutchings anywhere on the Internet is a comment from her mother, Linda Hutchings, on Sara Ryan’s blog which mentions a detail which isn’t in Birrell’s article: that one of her diagnoses is treatment-resistant psychosis.
Jade’s current situation is a unit called Farndon in Nottinghamshire, which according to a whistleblower who spoke to a local paper, had been a chaotic and violent unit but under new management, both patients and staff had reported that the unit had improved and was less chaotic and the frequency of the use of restraint had gone down. Jade was sent to this unit two years ago and so would have been there during the chaotic period mentioned in this report — surely a unit should not be allowed to take on new patients if there are serious ongoing problems with violence until they have been sorted out. The most recent CQC report rates the unit as “good” in all areas, but that was in November 2017 and the website says they are carrying out checks at the unit now.
Anyone who has been involved in this campaign for any length of time knows that some fo these units are dreadful, that people are held under section for no good reason and sent to places that are completely unsuitable even if they should not just be closed down and all the staff barred from ever working in the profession again. However, every so often a story has too many unanswered questions and gives you the impression that you are being manipulated or that the author is not letting the facts get in the way of a good story and this seems to be the case here.
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- On responding to anti-vaxxers
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- Autism, driving, and changes to British notification rules