Claire Dyer Belongs With Her Family

Full details of the Claire Dyer case covered here at the weekend. Cross posted from here with permission of Matthew Smith.

Claire Dyer is a 19-year-old who lives in Swansea, south Wales, a keen supporter of Swansea FC who loves going to watch them play and has met some of their players, who has a severe form of autism as well as a learning disability. She is currently living in an assessment and treatment unit (ATU, the same class of institution which Winterbourne View and the Oxford STATT unit were, although there is no suggestion that this unit is anything like either of those places), under Section 3 of the Mental Health Act, but is allowed out or home with her family most days of the week and for one night a week. She has challenging behaviour (i.e. she can be violent, although as with most such cases in autism, this is chiefly when she is bored or stressed), and has had to leave autism-specific units because they could not cope with her behaviour or she was bored, or both, or the places proved unsuitable for other reasons. Despite having spent a fairly successful five weeks at home last year, which had to end only because of lack of support, she is currently being threatened with a transfer to St Andrew’s Hospital in Northampton, which by the shortest reasonable route is 185 miles from home, something which is causing her considerable distress.

There is currently a petition being run by her family, which you can sign here. There are also a number of background articles in which her mother, Cath Dyer, gave interviews about the difficulties in looking after and finding suitable care for Claire: [1], [2], [3], [4]. Claire’s autism is unusual in that, although with hindsight there were some signs of it when she was in primary school, it only really manifested itself when she was 12, following a fall on the trampoline. In the years following, she was variously diagnosed with early-onset dementia, vascular dementia, psychosis, “a badly behaved and spoilt child that needed to be placed on the naughty step in order to learn the error of her ways”, and finally autism in 2010. She has lost the ability to read and write anything except the simplest of words, but can still speak both English and Welsh and passed grade 5 in piano (although she has given this up, but only recently). She has variously been in mental health units and specialist autistic units, and has either seen or experienced inappropriate things in most of them, including people setting fire to a toaster, slashing their wrists and having to be resuscitated mouth-to-mouth, and in a more recent placement a male carer “fell asleep in her bed”.

She has thus suffered quite a lot of trauma in a few years in which she has been less able to understand and process what is happening to her. What is disturbing is that the place in Northampton that she has been offered also houses people who are there for offending behaviour. St Andrew’s has a 105-bed unit for women and a 100-bed unit for young people (Claire is likely to be in the women’s unit as the maximum age for the young people’s unit is 18).

National Secure Service for Women – 105 beds Provides care for and treatment to mentally disordered women and specialist services for those who have a learning disability and personality disorder. The service also provides assessment and treatment for women who commit serious offences and present as a danger to themselves and others.

National Secure Service for Young People – 100 beds Provides assessment, treatment and rehabilitation for young people with psychiatric disorders including those with developmental disabilities and challenging and associated offending or high risk behaviours.

A further examination of their website reveals that they have the following learning disability units for women:

Women’s secure learning disability – 7 beds

Medium secure Learning Disability – 13 beds

Secure borderline personality disorder unit, including ASD – 23 beds

The men’s facilities include a medium, low and an “ultra-low” secure unit — why are women not provided with low-secure facilities?

Someone on the Facebook group on which I have been discussing this matter (along with Cath Dyer and Mark Neary) have said that she knows a psychiatric nurse there, and “they seem quite forward thinking in our conversations and are driven to rehabilitate in the community where feasible”. However, Claire’s community is not Northampton, and so rehabilitation in the community is not going to be ‘feasible’ when her family and friends are all 180 miles away (the round trip, even if they have a fairly efficient modern car, will cost about £30 per round trip; some may be subsidised, but not all). She will be reliant on the staff to take her out when they have the time (and short staffing is a problem noted in two CQC reports), or when they have suitable activities, or when her family can make it all that way, which will be much less frequently than she can go out or home with them now. Nights home will, I expect, be much less frequent, if there are any (a previous placement broke down because she could not cope with the twice-daily hour-long commute). The family previously refused a placement in North Devon as it would split up this close family; they want her living at home with appropriate support until suitable residential care can be found, and her meltdowns and ‘challenging’ behaviours occur much less frequently when with her family (which means, of course, that they happen when the professionals are there to see them). However, it is particularly disturbing, to me at least, that this institution houses people who display offending as well as merely challenging behaviour: it could easily lead to her being badly influenced, or assaulted. Even if they are housed on separate, locked units, is there a danger of her coming into contact with them?

Claire is currently held under section 3 of the Mental Health Act, and Mark Neary has noted that when the family has talked in terms of the Mental Capacity Act, which is the usual legislation concerning the interests of those with learning disabilities, they have been informed that the MHA ‘trumps’ the MCA. It is quite an unusual situation, because section 3 is normally applied to people with mental illnesses who are a danger to themselves or others and require long-term care. I was recently in contact with a woman with paranoid schizophrenia who was sectioned last September after a relapse which was triggered by surgery. She was initially not allowed out of the unit at all, then under supervision for two hours at a time, then unescorted, and gradually her hours were increased in the weeks before her discharge in December (which sadly happened before she had suitable accommodation, and she was re-admitted last week). Claire’s section was imposed after she tried (unsuccessfully) to escape from the unit, which simply gave the nurses greater powers to hold her under lock and key (which is unnecessary in the case of people with learning disabilities or dementia who are liable to abscond and possibly harm themselves, as courts have upheld numerous times). It is highly unusual to hold someone under Section 3 and then allow them out for a family meal that evening, and then most days over the entire life of the section. It goes to show that the law is somewhat confused (a law meant to ensure the care and safety of people with disturbed minds and possible dangerous behaviour should not be used in response to the normal behaviour of a stressed person with a learning disability), and is somewhat convenient for professionals who want to override the wishes of the people they care for, and their families.

Besides, the age in which disabled people, especially those with challenging behaviour, were expected to be shunted off to institutions for years, if not for life, was thought to be over. The age where children with such impairments were routintely removed from their homes, regardless of the quality of their family bonds, to boarding schools (as happened to me at age 12) was also presumed to be over, although for some it may still be unavoidable. It is simply cruel and thoughtless to send someone hundreds of miles from their home, to a place where they know nobody, not the professionals, not the other residents and not their family or friends. St Andrew’s could be the best place in the world (the last CQC report passed the women’s unit in all but two areas, short staffing being the most common problem which persisted across two reports, and the adolescent section failed all eight areas in an inspection last year), but would not be suitable because of its distance from her home: it is that simple. It is simply criminal to separate a person with autism from their family when they have good relations with them — these could be damaged irreparably, with devastating, far-reaching consequences. There is no excuse for this to be happening in this day and age, and no excuse for there not to be a suitable unit in such a highly-populated area as south Wales.