The continuing sacrifice

In my more cynical moments I dream of writing a Hand Book of Bureaucratic Postponements. ‘He’s in a meeting. I’m sorry – can you call back?’ ‘She’s on holiday, off sick, on maternity leave, out to lunch, h’mmm I saw him somewhere about just a moment ago: shall I take a message?’

That’s only level one: then it gets worse: ‘we closed the case, de-allocated, she left and no, no one’s taken up the case, maternity leave’ Many of you will know the story. Long term sick leave figures at some point, as does understaffing. Then they move offices, lose files, suffer system failure. Then they decide that they can’t offer a service because ‘he doesn’t match the entry criteria’, which is when it ceases to be funny. Then they call a meeting and because so many people have to attend it can take three months to schedule. Then finally they agree to fund something and you are put on the waiting list.

It is not they the services or the people in them don’t care, only that they are unable to help this group because they are neither trained nor funded. In trying to manage their time, budgets and caseloads, all the fault lines in the system are exposed.

For instance:

Daniel is 30. His mum called me this week. He has recently been identified as having Asperger’s or PDD (14 points out of 21, so it is a little equivocal, as it often is). His paediatric appointment was five years late, so he was over the line between adult and child by that time. He got himself to university at21, but felt degraded by having to repeat his first year (he had done well in his exams but had not done his coursework), and was suspended. He spent four years in his room then became angry, met the mental health system and was prescribed anti depressants. Social services could not help because his IQ was above 70. Someone suggested Cognitive Behavioural Therapy, but none was available in the borough in which he lives. The doctor applied for funding for an out of borough service, and the local mental health team closed his case because he stopped taking the anti depressants. He was becoming dangerous and odd, scared and frightening in his behaviour and was put on a 6 month waiting list for a local service, (which you have to try before any out of borough support can be considered) which he left after three sessions as it was not apparently useful to him: ‘He discharged himself’. By doing this, he has now qualified for the CBT that was suggested and is on another waiting list for the service at the Maudsley Hospital in London. It will be surprising to me if he avoids being sectioned and being taken into a psychiatric hospital.

On July 30th, I read in the Telegraph of Tim Whattler, who committed suicide at 17. Diagnosed at age 8 as having Asperger’s Syndrome, he annoyed his teachers with his autistic behaviour and at age ten became depressed, attempting to die by sleeping in the snow outside his home, hoping never to wake up. Seven years later he hanged himself in a psychiatric unit to which he had been transferred. In those intervening seven years his story runs like this:
- Attends a special school where he stayed for three years before having to leave because of changes in the school premises.
- No suitable unit for him, so sent home and put on Seroxat (known for increasing suicidal tendencies).
- To a residential unit amongst anorexic girls. His weight drops dramatically, parents blamed for his problems.
- Kept at home for the next four years. Lonely and bored, he tried to hang himself.
- To an adolescent residential psychiatric unit where he is introduced to cannabis (known to increase psychosis).
- To a more secure unit at which they play loud pop music all day (anathema to someone with Asperger’s and sensory sensitivities).
- To a rural unit for people with learning disabilities (Tim had an IQ of 140).
- Moved from 24 hour care to his own flat, against his parents wishes. All medication withdrawn ‘because he could not administer them himself’.
- Tried to hang himself with a kettle lead, and so sent to residential unit in the West Country
- After three days transferred to another unit. Allowed to keep his razor and shoelaces, he cut himself 75 times, and was allocated a room with ten points from which he could hang himself, far away from the nursing station. Within six hours of being admitted he hanged himself on a wardrobe door knob, unnoticed by staff until his Dad came to visit.

200 people a year kill themselves in psychiatric units.

Suicide is the second most common cause of death for 15 to 24 years olds

People with Asperger’s are noted for their elevated suicide rates.

It is not good enough: there are an growing cohort of people who are diagnosed with this condition, many who are not. Some end up in prison or psychiatric wards, and are give inappropriate medication that masks their condition and people are brushed off and shipped around in a way that is desperately hostile to their needs. People with Asperger’s need the same attention that people with Learning difficulties and mental ill health get, and there is no justification for denying them.