Kay is an intelligent woman who had a professional job before she became ill. She is also a very caring person. During our stay one of the other patients (call her Sophie) suffered a very upsetting incident. She locked herself in her room & wasn’t responding to people trying to comfort her. We were worried that she might harm herself, so Kay & I went to check on her. (Sophie was in a different building to us, on her own at the time). When we went over, late in the evening, we found she had emerged from her room. Seeing she was alright, I was about to go, but Kay asked “would you like us to stay for a bit & talk to you?” She stayed for 2½ hours.
Kay had been ill for 20 years. When she came to the ADRU she wouldn’t even wear trousers because she was so worried that the bottom of the trousers was so close to the ground that they would be contaminated. In her last weeks she was lying down to do exercises on Gym mats which were so dirty you could see footmarks outlined in dirt. She was sparking with life until she was told she wasn’t going to get her extension. She said what made it so bad was that she had begun to hope she would be cured, and that hope had been snatched away.
So far I have only seen the bits of the documentary about me. However, I have talked to the documentary makers Pete & Dave about Kay & why they couldn't say something about it. The fact that she didn't want to be filmed or identified was given as a reason. I wanted a short voiceover or written text at the end of the program, just a few sentences, to say what had happened.
I strongly support the work of the ADRU (Anxiety Disorders Residential Unit), and I believe the documentary makers are good journalists. It’s disturbing that even good journalists are making documentaries which fail to report such disturbing facts.
Other things which are not being reported are:
The ADRU have had to reduce their number of therapists by one because of budget cuts. The head of occupational therapy took on some patients to compensate, but this has affected the quality of OT.
ADRU patients are now to be denied access to help from the Welfare department because of budget cuts. Both I, and Kay, had essential help from Welfare to sort out problems which had been festering for years.
Care in the community means little or no care for most mentally ill people, and things are set to get even worse.
At least four of the 12 patients at the ADRU had been left for years with no working central heating, living in squalid conditions. This includes Kay and me. Kay had a broken, east facing window in her bedroom. Two of us had been unable to feed ourselves properly. Kay and I had had vermin running around our homes (a rat in my case, mice in her case). I had scarcely been able to open a single letter in seven years. I had received no help with this until things passed the crisis point (I was heavily in debt as my benefit had been cut off because I was not responding to letters to calling for me to be re-assessed or to re-apply for benefits). Kay pointed out that even a murdering paedophile wouldn’t be left in the conditions we had been living in. If they were, there would be an international outcry by Human Rights organisations.
At the Channel 4 launch of the series on Monday the Series Editor Dave said that none of the Care Coordinators he had spoken to had raised shortage of resources as an issue. My own current care coordinator said the idea that there wasn’t a shortage of resources was “absolute rubbish”. Neither she nor any of her colleagues, nor my therapist at the ADRU felt they could allow their views on the matter to be known by any journalist, because it would mean the end of their careers. So, although the researcher Pete Beard told me yesterday that they had talked to Care Coordinators in a dozen different CMHTs, they probably weren’t hearing what those people really thought.
My Care Coordinator told me yesterday that CMHTs were being transformed into Recovery teams, the idea being that people who had no prospect of further improvement would be discharged & given no further help, even if they are seriously ill & likely to deteriorate drastically without continuing support. This is repeating the disastrous move by the last Labour government, which gave CMHTs a quota of people to be discharged every year. They too felt that people who were not improving should be discharged to make way for new people to be treated. In addition, Labour told mental health services that they should stop giving people so much help, & encourage them to do more for themselves. Whatever was intended, the result was that lots of seriously ill people had all help & support cut off. My mental & physical health was permanently damaged as a result. Before they introduced this stupid policy, I was far more functional, for instance I was able to drive my car & use my own PC at home. Because I was unable to care for my physical health I also suffered skin damage, nerve damage, kidney damage & lost several teeth.
None of this stuff is being reported by ANYBODY.
Nevertheless, the situation for many of its clients is increasingly desperate. Commissioning favours those that indicate they are amenable to 'cure' (external management and control), and tends to disinvest in those of us unfortunate enough to fail this eligibility test.
At Mid-Staffs, Francis commented about the falure of an institution, and the difficulties whistle-blowers had in stimulating remedial action. With mental health, we are witnessing the failure of an establishment, with front-line staff disincentivised from citicism by fear about career progression.
Increasingly, service users are involved in service management. The trouble is, trenchant critics are seldom those recruited to such work. The boxes are ticked, and the critical voice eliminated.
Adam Papier Black