Claire Dyer and the LB Bill

Picture of Claire Dyer, a young white woman with shoulder-length hair, looking through a closed window at her dog, Jonjo, who is being held up to the window by a person in a black raincoat.On Friday 1st August, Claire Dyer’s family lost their legal bid to stop her being transferred from an assessment and treatment unit in Swansea, where her family live, to a medium-secure unit near Brighton, some 230 miles from her home. Claire was transported within an hour of the decision being made, without any of her family being given the chance to say goodbye. A number of charities have spoken out over this dreadful decision, including Mencap, after Claire’s supporters contacted them en masse through Twitter in the days before her transfer. Hamish Laing, medical director of the local health board, promised a number of people who alerted him on Twitter that he would “speak with MH team to get more info”, but it didn’t have the desired effect, if he said anything (although she is still under the board’s care, even though she is a long way out of area).

The disadvantages of the move to everyone except the staff at her old unit (and the American-owned company that runs the unit where she is now) are obvious: it’s more than 200 miles from home, a five-hour car journey (one of the family gets car-sick, by the way), which makes it not only a lot more difficult to visit her but also to attend care team meetings and to communicate with the staff, all of which could be done easily while she was in Swansea. That she does not need to be in secure conditions is borne out by the fact that she was allowed out almost every day during the entire period she was sectioned (since last September), including after the supposed need for a secure unit was determined, except for about three days in the last month, including spending almost every weekend at home. There is plenty of photographic evidence of this, and if the unit could be bothered to contact the management of the various public places Claire has been, they could easily verify it. The health board’s solicitor said that they believed that the family had been under-reporting incidents (while they, of course, had been meticulously logging all of them), but they were not, it seems, called on to provide evidence, and the fact that the places Claire goes have allowed her back time and again, including various public sports facilities, demonstrates that there have not been that many outside the unit.

In addition, there is concern about the types of other patients Claire is being exposed to at this unit. I searched for the name of the unit and three separate stories appeared; two of them were about suicides of women who were referred there for serious crimes, and another of a woman who died of a heart attack and an ambulance was not called for 25 minutes after she was found unresponsive. That woman, who was sectioned after being admitted voluntarily, had recently complained that family visits were being made difficult (and she only lived in south London). The unit’s main patient focus is identified on their website as mental illness and personality disorder, and the website mentions “mild learning disability” and not autism at all. Claire is, in other words, being housed in a unit known to be unsuited to her needs among women with severe mental health problems and a history of serious violence who are mostly of normal intelligence, which puts her in considerable danger, when she could be out in the community if the authorities were willing to provide the necessary support. It also appears that the staff do not understand either her autism or her communication difficulties; she cannot attend meetings without having someone to explain what is going on in simple language (which her parents previously did), which has not been provided.

Picture of Connor Sparrowhawk, a young white man wearing a blue shirt and denim shorts, squatting on dry muddy ground in front of a wire fence, behind which is a green fieldThere has been a movement to introduce an “LB Bill”, named after Connor Sparrowhawk who died in an ATU in Oxford last July as a result of negligence. Of course, poor care and neglect happens in a variety of different types of homes and hospitals, and a report by Mencap in 2007, Death by Indifference, found that people with learning disabilities were more likely to die preventable deaths and that they were not receiving equal healthcare. Unlawful or abusive long-term deprivation liberty is a different issue facing people with learning disabilities, and their families, as they try to access care and suitable accommodation. The main thrust of the “LB Bill” would be to enshrine in English law the right to independent living which is part of article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Although the UK has ratified this treaty, it does not become enforceable without an Act of Parliament.

The problem is that merely legislating a “right” does not mean that this right will be honoured; there are numerous countries which have constitutions that supposedly enshrine rights, but these rights can often be overridden, especially when the political class and most of society believes it should be (usually during times of war or other crisis). In this case, a right on its own could easily fail to be delivered because of lack of money, lack of suitable alternatives to needing to “balance their rights with others’ rights”, or because other legislation prevents it. And an important piece of such legislation that is being used to deprive people with learning disabilities of their liberty is the Mental Health Act, under which Claire is being held and which is what facilitated her transfer. Mental health hospitals are often unnecessarily restrictive environments; they often restrict family visits and ban under-18s from visiting altogether, even on adolescent units; they confiscate personal possessions on “safety” grounds without reference to whether they pose a risk to that individual’s safety; they bar access to the Internet, often for no good reason (a common excuse is that the cameras could be used to violate other patients’ confidentiality, but if only used in patients’ rooms, this problem can easily be avoided). Patients who are newly transferred are often put on the most restrictive level of security on arrival, regardless of what ‘privileges’ they enjoyed before (and regardless of the reason for their transfer). In Claire’s case, she has not been allowed out of doors since moving on 1st August. This could have been avoided if the responsible clinician had not been on holiday, but why are patients allowed to be transferred at such times, other than in emergencies?

Others have covered such issues as reforms that need making to the Deprivation of Liberty Safeguards, especially in the light of recent court rulings that have resulted in a dramatic rise in applications for Deprivation of Liberty authorisations under the Mental Capacity Act (although there, more money to handle the volume of cases is needed as well). Besides the relevant section of the CRPD, the right to family life under article 8 of the European Convention on Human Rights should be emphasised in protecting the rights of people like Claire, and Steven Neary (who was threatened with similar machinations under the Mental Health Act to transfer him to Wales, of all places) before her. However, the Mental Health Act is widely being used to side-step the safeguards and abusively detain people with learning disabilities, particularly autism, for the convenience of staff rather than their own best interests. Among the reforms which must be implemented are:

  • It should be less easy to detain a person with a learning disability under section 3, and there should be a distinct mental illness rather than the effects of their disability (in cases of their causing severe injury to someone, court orders should be available to allow them to be held securely).
  • Sectionings should be subject to review, so as to make sure there is a genuine reason and not a mere pretext (e.g. “s/he behaves better when on the section than when off it”).
  • There should be a requirement to distinguish between behaviour in a unit setting (where there are often particular stresses, such as a hospital environment, chemical smells, unfamiliar rules, other autistic patients, obstructive staff behaviour etc) and their behaviour when out in the community or with their family.
  • Their best interests should be paramount in any transfer decision, not those of the staff unless they pose a dire threat which cannot be handled by increasing staff.
  • MHA Tribunals should be convened promptly, should not be subject to undue delays and should not lapse if a section lapses and is renewed.
  • Patients’ security status should be passed on when they are moved to new wards or units, and maintained.
  • Patients should not be transferred when the responsible clinician at their new units are away, except in an emergency.
  • People with learning disabilities should not be accommodated alongside those without, especially where staff are not specialists in (their) learning disability.

I have been following the updates in Claire’s situation and it is appalling. Her treatment is simply cruel; she has not been allowed out of doors in all the time she has been there; she has been allowed to see her family only in a visitors’ room and only with staff present; she has been told off for crying in front of unit management; she has not been provided with the means to communicate with her sister, who is deaf. She should, however, simply not be in a secure unit, let alone one hundreds of miles from home. She should not be in a mental health environment, or in any kind of detention, at all. She should be home with her family, or in a suitable residential care placement nearby. The law needs reforming so that such abuses cannot keep happening to vulnerable people.

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