Kids in Crisis was a programme about children with severe mental health problems in the UK who are being transferred a long way from home, sometimes hundreds of miles, because there is no inpatient care anywhere near where they live. They focussed on four families (with one exception, the young people themselves did not appear in person), three of whose children were already in that situation and one who was displaying difficult behaviour including damaging property and self-harm, and who it was suggested might need inpatient care in the future, which was not available in his home area. While at least two of the young people have Asperger’s syndrome, this was about child and adolescent mental illness, not learning disability; similar cases involving children and young people with challenging behaivour stemming from severe autism (e.g. Josh Wills, who is expected to return to Cornwall from Birmingham after three years this month) were not featured. They also interviewed mental health support workers from the local NHS trust, who explained the difficulties they had in finding beds for young people during a mental health crisis. It was mentioned in the programme that the Royal College of Psychiatrists reported that nine out of ten psychiatrists surveyed said they had sent a patient a long way from home for treatment in the past year. (The programme can be viewed in the UK on the Channel 4 website for the next 29 days. More: Upside Down Chronicles.)
The four young people whose stories were featured were Oli, aged 13 and Chloe, aged 17, both from Cornwall, Beth, aged 15 from Hull, and Emily, aged 18 (although she was 16 when she was first admitted) from Belfast. Oli is currently living at home with his mother and sisters, and sometimes has long and violent meltdowns which stem from mental health difficulties and Asperger’s syndrome; he also has epilepsy, and is aware of and distressed by some of his seizures. He enjoys surfing (there is a local charity, the Wave Project, which uses surfing as therapy for young people with mental health difficulties) and music, and his mother describes him as a lovely boy when not in a meltdown. Currently his behaviour is controlled, where necessary, by temporary increases in medication, but it is feared that he might need to be admitted to hospital at some point, which would mean moving out of county, as the nearest children’s mental health inpatient facility is in Plymouth, and the next nearest is in Bristol. Oli’s mother said “I don’t know how children are expected to heal when they are separated from their family”; the reality for many is that they do not.
Chloe, also from Cornwall, is 17 and adopted. She was a happy child, did well at school and was keen on sport, especially cricket (she was described as someone who “made things happen” and could turn a game when she became involved), but when she reached adolescence anxieties that had already been present became more severe, and eventually she became violent, suffering hallucinations and wrecked her room. She was admitted to hospital and was moved several times, all of them close to London, before ending up in a secure unit near Orpington. Her parents have to travel the 300 miles to Orpington for a two-hour visit and then go straight home, saying they would “get into trouble” if the visit exceeded that time. While home leave is considered an important part of getting someone in inpatient mental health care back into the community, this is extremely difficult because of the distance — it would require two staff to travel with her, and back. There is talk of finding less secure accommodation in “the south-west”, but as her mother pointed out, that could mean Wiltshire, itself nearer to London than to Cornwall.
Beth, whose case I have been aware of since it was reported anonymously in the local press in 2013, has Asperger’s syndrome and her problems also began with the transition to secondary school; although her mother, a nurse, had moved the family to their “dream home”, she became withdrawn and refused to come out of her room. Eventually, she had to be admitted to the local West End children’s unit where she made progress and was released and was able to go back to school. However, when she needed to be admitted again, West End had been closed because of “restructuring”, despite being a well-regarded unit. Beth has since been in some 14 hospitals, mostly in the north-west. At the start of the programme, she was looking forward to a transfer to another hospital in Liverpool which would allow her home leave, which she got; however, after some “violent incidents” with other patients, she was moved somewhere else (a very restrictive environment which does not allow home leave). The crisis meant that her mother was unable to work full-time and it led to her home being repossessed. Beth is desperately homesick and her mother said she was losing hope that she would ever return home, but she has also picked up destructive behaviours from other mentally ill teenagers she has had to mix with. Her mother says she “tends to morph” into whoever she is with. The programme showed her and her son trying to maintain family life with Beth gone, playing the games with him that Beth would have done if she was still around.
Emily, from Belfast, was admitted to a local eating disorders unit, but had to be transferred to the main hospital in Belfast because the ED unit lacked the expertise to fit naso-gastric tubes, which are essential in treating severe eating disorders. She was then transferred to an adolescent ED unit in London, requiring her parents to fly weekly to London to see her, and when she turned 18, she was abruptly moved to an adult ED unit, where the focus changed to encouraging her to “take responsibility” for her condition, while excluding her parents, who have never been allowed into her room. This exclusion of the parents of young adults from their care and treatment has been widely complained of in the learning disability field as well, when often families are well-placed to explain their relatives’ individual needs, triggers, likes and dislikes and so on, which do not suddenly change when someone reaches 18.
None of the three who are in units away from home featured in person in the programme; the Telegraph’s review noted that “their presence was felt in their absence, in letters and phone calls and empty bedrooms”. We did not hear Emily’s voice at all, but only saw pictures; we heard the voice of Chloe down the phone, talking about what she was going to be doing and what she wanted her parents to bring, and we heard most from Beth, whose letters were read out by her mother (and her local MP, in Parliament) and we also heard her talking on the phone to her mother and younger brother. Beth’s non-appearance was her mother’s decision, though this was not explained. One of the phone calls we heard was Beth talking to her brother about what he was doing at school and both saying they loved each other, before her brother hugged and kissed the phone as if it was Beth. Later on, we hear Beth crying that she wanted to come home and her mother tells her hug her pillow and imagine that it was her. Beth replied “but it’s not you” (from personal experience, I was not surprised that this did not comfort her much). This was certainly the most emotionally affecting part of the programme.
I do not think the programme asked deeper questions about why this is happening and why more was not being done to accommodate the parents. It has been known for some time that parents have to travel far to visit their children (and the same for relatives of adults in far-away hospitals), so why is there nowhere for them to stay so they can spend a weekend with their loved one rather than one or two hours in between eight or twelve hours’ travel? It did not ask why there is only one children’s mental health inpatient facilities south-west of Bristol, despite a fairly large population even if not in Cornwall. The reason in the case of Hull is obvious — it was shut down — but it may also have something to do with much of the capacity being in private hands; both Oakview, where Chloe is now, and Cheadle Royal, where Beth is, are run by private companies (Emily’s unit in London looked like it was as well; there was no NHS sign outside) and private companies go where the money is. If a private company will not invest in building a children’s mental health unit in Devon or Cornwall, the state needs to do it.
The lack of person-centredness of the care being provided was not examined either. It was clear, for example, that Beth benefited from home visits, but the unit she was in at the start of the programme and the one she is in now (I am not sure if they are the same place) do not allow them. If she is in a unit for reasons other than needing the particular type of care they provide, really there ought to be some flexibility rather than a “that’s how we do it here” attitude. (The same was true when Claire Dyer was sent to a medium-secure unit hundreds of miles from home last year; she was confined to the building for several weeks despite having been out almost every day for the past two years without incident. The care in these places is often centred around the needs of the institution, not the individual forced to live there.) And does a young girl who self-harms and trashes her room really need to be confined in a place with fences some four times the height of a man? Is she being confined with convicted offenders, as has been the case with autistic young people sent away? (The prospectus for Oakview [PDF] is careful not to show it, but it was there in the programme.) It has been understood for years that you should not mix young people with autistic spectrum disorders with disturbed, violent teenagers (something that was explained to me as an adult with regard to my own schooling), but the lesson seems to have been lost in mental health care, leading to enormous damage and lengthened time in institutions for the former. And as was seen last month in the case of Maisie Shaw, also from Hull, they have been known to discharge patients suddenly and inappropriately, without ensuring there is on-going support. An NHS hospital that doesn’t badly need to free up a bed would not do this.
The programme exposes one scandalous fact — that children with mental health problems who are vulnerable are being sent hundreds of miles away from their families for treatment, which in some cases makes them worse — but really doesn’t look at the deeper issues besides the closure of West End, perhaps for lack of time. For one thing, there is the nature of secondary schooling, with its inappropriate 11-16 or 11-18 age ranges which present numerous problems of their own (bullying, sexual harassment), the lack of ASD bases in many schools and the closure of special schools, even day schools, often on ideological grounds. But the main reason is the public attitude to mental health and health care. For decades we have been closing local mental health provision, outsourcing it to private companies who can build glossy-looking “units” rather than refurbishing existing hospitals to provide modern conveniences and privacy. Some of these old hospitals were grim, but they were large (and so can accommodate the smaller number of inpatients we have now) and they were local. People were glad to see these places closed; there is a stigma surrounding both the patients and the institutions (there is distrust even for psychiatrists themselves) but do not think of where those who do need inpatient care will go. This does not just affect people in remote areas, either in mental health or learning disability; people from London and Essex have been moved to unsuitable units in Manchester, people from central Scotland to Middlesbrough.
We must get back to having local inpatient mental health care and there must be some slack — there should be empty beds, so that those who need a bed locally can get one. We are not a poor country and we do not need to pinch pennies in an area of healthcare which is not glamorous, but can mean long-term illness or good health, or life or death, for a child.
There is still a petition to re-open the West End unit in Hull, so that young people like Beth and Maisie, who has featured on this blog previously, can receive appropriate treatment and have ample support from their families. There are now plans to re-open it, but it has not been decided for sure and there is still a long way to go before it does open. Maisie was released last month.
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