Today the Mail on Sunday published two long articles (, ) by Ian Birrell, a former speechwriter to David Cameron who has a disabled daughter, on the scandal of autistic people and people with PDA (pathological demand avoidance syndrome) trapped in institutions in the UK. This follows the outcry started when BBC’s File on 4 broadcast an interview with the father of a young woman named Bethany who had been in seclusion at St Andrew’s hospital in Northampton where her father could only visit her by talking to her through a hatch in a doorway; this has now been ended as a result of the publicity, though not before the local authority tried to take out a court injunction to prevent him talking about his daughter’s situation. Birrell’s articles include a brief run-down of a few people’s stories, most of them well-known to the activist community already and most of which have been in the media before. Birrell also claims credit for getting Beth moved out of seclusion into a “three-room unit” within St Andrew’s by saying that it took place after his article was raised in parliament and read by the health secretary, but fails to mention the File on 4 piece which actually brought Beth’s case to public attention.
Mark Neary also tweeted this morning that he was “disappointed there was no mention of human rights in these articles”. Not all the cruelties mentioned in these articles have anything to do with money; some of them are just downright cruelty or the product of a rule-ridden and risk-obsessed culture in British mental health care. It is, for example, standard practice not to allow parents or other visitors to see the room their child or friend/relative lives in, ostensibly to protect their privacy and those of other patients. When they visit, they have to do so in a visitor’s room (if they are not allowed out with them). There have been cases of families coming to visit and being told that one family member cannot enter because they are under 18, resulting in them having to sit in the car for the entire period. In other cases, visits have been refused after the family has travelled for several hours to visit them because they are “not calm” or have not been for two hours or some arbitrary period. Some institutions make no attempt at person-centred care and some treat their patients with no regard for their dignity. This has nothing to do with money. The fact that the mental health sector has, over many years, failed to educate itself on autism and PDA so that it can treat people with these conditions effectively and without abuse, and so that consultants and qualified nurses dealing with autistic people know more about autism than healthcare assistants or other sectioned patients, cannot be blamed on money either.
But the reason people are trapped in these places for extended periods often can. It has become very common to complain about the cost to the public purse of keeping people in these units particularly given the atrocious and neglectful treatment they receive, and Ian Birrell’s articles are no exception. But local authorities would have to foot the bill if they were not under NHS care (either directly or through a contract with a private provider such as St Andrew’s or a company such as Priory or Cygnet) and they have been starved of funds over many decades simply because people hate paying taxes and would rather complain about poor services, be it social care or bin collection, than pay for them. In some areas, councils have carried out consultations asking local people what they would be willing to pay more council tax for and the reply usually comes back as “nothing”, leaving the council to sell off assets such as playing fields and staff car parks in schools to raise money.
We’ve all heard of, for example, care home companies hiring staff at minimum wage, often who don’t speak English properly and who do not have proper training. If you are in contact with disabled people for long enough you will hear of some of them losing good carers because they cannot afford to live independently on a carer’s wage, or because more money is offered elsewhere. In some places people with personal budgets are ‘encouraged’ to put their staff on zero-hours contracts because offering a proper employment contract with holiday pay and so on costs extra money. I have heard of numerous cases where autistic people were discharged from hospital into a bespoke housing and care arrangement which fell apart months later, resulting in them having to be re-admitted, often hours from home; these things would be less likely to happen if carers were well-trained and well-paid. In the case of St Andrew’s, we heard that evenings and weekends were being covered by agency staff (who in Beth’s case were forbidden to open the door of her room, hence the ‘visits’ through the hatch) rather than full-time staff, and this was only remedied as a result of publicity. The same charity was able to pay its chief executive nearly £1m over two years and has 72 other staff on six-figure salaries, but cannot afford specialised nursing care for its patients outside of business hours. Why? Because private contractors have to tailor their bids for public contracts to be “cost-effective” so as not to cost the taxpayer more money than they absolutely have to because ultimately, no political party can contest a general election with the promise to put up taxes, and ideally want to be able to promise to reduce them.
The Tory party, which Birrell supports, and its supportive press such as the Daily Mail, has driven this trend towards cutting taxes at the expense of public services since the 1980s and the cuts that characterised David Cameron’s time in office have made it all the more difficult for local authorities to provide the care that elderly and disabled people need. Of course institutions need to be exposed if they are subjecting people to cruelty but the ultimate reason people are trapped in them boils down to central government policy and a culture of meanness and penny-pinching that has built up over several decades and that is something we do not see the Tory press complain about. One of the parents featured in this article asked on Twitter this morning “When will our most vulnerable be treated with love and care?” and the answer is: when people are willing to pay for it, when they realise that these are things that don’t only happen to other people, and when the same newspapers which complain about poor care and blame staff get honest with the public about the real reasons social care has been cut to the bone.
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