Debate: Care in the community

Has care in the community failed? Two people who have been through the system give their views
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Indy Lifestyle Online
The Government is planning to reverse parts of the care in the community mental health policy, so was it a failure? No, says David, a schizophrenic; it has allowed him to lead a normal life, to have a job and to marry. Not everyone has been so lucky, says Diana, a depressive; the policy continues to fail many, and sometimes with tragic results

David believes care in the community has allowed him to live a normal life despite suffering from schizophrenia.

I manage to lead a relatively normal life, which is what I want. Being in hospital is not a pleasant experience: you're not in control of your illness or your life. It can be very painful, especially during the first few days. I've only ever been a short stay patient, for a few weeks at a time, but I have had to go in about 10 times.

I haven't needed to go into hospital for five years, and I'm capable of leading an independent life. Of course I go through periods of great stress, and I'm on medication because of my illness. I need someone to help me out with things, and that's the role that Community Psychiatric Nurses (CPNs) fill. I've had a couple of nurses over the years and they've been first class.

I can call the CPN and he'll be out within the day. He helps me with problems I'm going through; he's a good friend as well as a nurse. I couldn't do without him. He's a tremendous person, and he'll come and see me, and we'll share jokes, talk about stress, marriage problems, and he'll offer technical advice about things like my driving licence.

I got married seven years ago. My wife is a great support to me. Since our marriage my health has improved, and my work took a turn for the better - I now work across the country. I don't tell my customers that I'm ill because in the past I have had an unfavourable reaction. If they knew I was a schizophrenic I would be labelled. If you can do your job well, you don't have speech problems, you can be a normal member of society.

As far as marriage goes, it helps having a good friend. She's 19 years older, and I enjoy having someone I can share things with, talk over things with. The sexual aspect is very good too. It gives me someone to care for, and she cares for my needs. We don't actually live together, but on nearby streets. She found it difficult to live with me, so I took a flat down the road. I can be on my own when I need to be.

We go on holiday when we can. I'm a church organist, and have recently got the post of church organist at my local village church. Music is one of my talents, and the socialising and the fellowship is a great help. It's something I can give and receive.

I have now got a lot more customers, and I've also had a book of poetry published. I've begun to take control of the illness, rather than it controlling me. I did that with medication, which I think is essential to recovery. A lot of people stop the medication because of the side effects, like I have a problem with head movements, having been on these drugs for 20 years.

I decide what to take entirely, which is normally four tablets a day but I can increase it to eight if I'm feeling bad. The limit for driving is six. I can manage my illness by using the tablets, which is entirely up to me and in my control. The CPN can advise, but it's finally down to me.

If someone's reality becomes warped, I think they should be hospital - if they're floridly ill. But that hasn't been the case with me for five years. When it isn't that bad one should be in the community, as long as there's proper back up: somewhere to live, with friends, social contact and proper support.

Diane feels that the policy has let her - and many other people - down.

I've been in hospital three times, each time for a period of months. I've also spent four years in a Mind hostel. I don't have any back-up in terms of family: I'm widowed, my parents have died, and I have no children. The rest of my family live up north and I think they're embarrassed about my illness.

Patients discharged from hospital are supposed to have periods of rehabilitation, to be taught how to boil an egg, how to shop and pay bills and so on, but it doesn't always happen. It sounds mundane but think about it: if you're not used to dealing with the world then places like supermarkets can be frightening. The trauma of being forced out into the cold world after a life inside a hospital can be hell. I've seen people virtually destroyed by it.

They may have problems with memory, especially if they have had electro- convulsive therapy. Some people are very slow in reactions and concentration, so their comprehension is very poor. If they're bad depressives they won't respond to this by making an effort: they will just stay in bed and hibernate. That has happened to a friend of mine. Care in the community is supposed to be about allowing social interaction, but sensitive or depressed people just become isolated.

The main factor is that the chronically ill have been moved out into bed and breakfasts. They're supposed to have CPNs or social workers, but many of them don't turn up. Often people cope for six months or so and then start to go downhill. If landlords or the council don't know the situation then they may be evicted and end up living on the streets.

Another problem is the lack of medical supervision. I've done it myself; you start to feel fine so you stop taking the tablets you're supposed to. You forget that you've got a chemical imbalance, then you get very ill.

It's a revolving door situation: the council, the social workers and the hospitals don't coordinate. My consultant psychiatrist suggested that I should contact a social worker to see about getting some funds to go on holiday. It took nine weeks to get an interview and that was two weeks ago, and I've still had no response. It's the same when you want to get rehoused. The cogs of bureaucracy are jammed. Housing don't talk to the council, the council don't talk to medical services. It is a nightmare.

Many people cannot fill in forms and without forms there is no disability allowance, no accommodation and so on. I simply didn't know, half way through the winter, that I needed to reapply for housing benefit. Without volunteers there would be no net. The government is doing very well out of all these volunteers.

I'm lucky: I have my own flat and I do have a CPN. I do a lot of gardening, and I have cats and dogs, but I get very lonely. Chronic depression is just as serious as schizophrenia but many people don't have any help. Everything in the health service closes at 5 o'clock in the afternoon and then you're on your own for the night, and everything closes over the weekend.

These are the things that cause agitation. These are the things that make people cut themselves, jump on railway lines or attack someone. They are acting out of sheer desperation.

David, 45, is a musician and piano tuner. He has suffered from mild schizophrenia since his first breakdown in 1978.

Diana, in her 50s, has suffered from episodic bipolar depression since the age of 16. Formerly a secretary, she is unable to work but helps out at a day centre in West London.

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