The text of a talk given at Tayside Carers Support Conference on 29 September 1999 by Professor Rex Last
Today, I want to talk to you about children. No, I'm not going off the subject of the conference as I hope you'll see in a moment. What I am going to do is to approach it from an entirely different direction. I am deeply concerned about new directions in the care of the mentally ill, but I believe that it is not just the latest chemical bullet or the newest brand of cognitive therapy which can and should make the difference, valuable though they are. Other factors are just as significant in my view - if not more so. Where was I? Yes, the children.
There was a program on Channel 4 a few days ago entitled: Do children need parents? It was an absorbing, challenging exploration of the unorthodox view that the peer group (i.e. other children) had a far greater impact on upbringing, character development and so forth than the parents.
The scientific establishment hated it. Why? First, because it was unorthodox, it didn't build on existing research in the painstaking, brick by brick conventions of academic investigation. And worst of all, the woman putting forward this view - although very well versed in the subject - didn't have a conventional scientific background. She hadn't climbed up the slippery pole via PhDs, refereed research papers and the rest. So the whole thing was condemned out of hand.
What's that got to do with New Directions in the treatment of schizophrenia? A whole lot, in my view. The medical establishment has to do two things which can transform the care and treatment of the mentally ill: (1) they must dare to think differently and (2) they must accept that they aren't the only experts on the block. And then perhaps some real advances will take place in the care and treatment of users.
I firmly believe that the way people are treated is as important, if not more important, than what they are treated with. For example, a user emerging from a florid episode is allowed to leave hospital, is found a flat, given daytime activities, and has his or her DLA and other benefits evaluated. Fine. But in the current system 9 times out of 10 this means that the user gets interviewed at least four times by four different people and asked the same daft questions like what is your name, how old are you and who is your GP.
No one seems to have cottoned on to the fact that every one of those interventions will cause serious stress and upset to the user and he or she may end up feeling a whole lot worse because of them, although they were designed to achieve the exact opposite. Ask the questions just once and get the professionals to coordinate their work, and the stress goes away. Simple? In an ideal world, perhaps.
The establishment has to dare to think differently, to undergo real cultural changes, not just to nod politically correctly in the direction of joint working with housing, GPs, social work and the voluntary sector, but to do something about it in real terms on the ground. The patient isn't divided up into separate needs, he or she is one whole person, so why carve up the delivery of those needs?
So the seamless delivery of care based on sensitive needs assessment will in itself transform the treatment of the user of mental health services.
And what about my second point, about who the real experts are? I know from personal experience and from the experience of other carers that we may not be the top experts on pharmacology, psychiatry, cognitive therapy and the whole alphabet soup of specialisms surrounding the care of the mentally ill, but we are experts in one subject - the user who is in our care.
The experts ignore that invaluable resource at their peril - and believe me, they have, time after time. I have lost count of the number of occasions when I have heard of a carer stating unequivocally that their son, daughter, wife or husband is, quotes, an accident waiting to happen. They can see all the signs of deterioration because of the fact that they've lived with that person over years, decades, maybe and know them inside out. They can see the signs. But because they haven't got the medical degree, the qualifications, they are ignored. And more often than not, the accident happens, sometimes with fatal results.
Including the carer or carers as part of the loop, as a full member of the professional team delivering care for the user, would again transform mental health care. Just as would the cultural change in health, social work, housing and the other providers. The voluntary organisations in Scotland are getting very good at joint working and joint commissioning. Now it is the turn of the statutory sector.
Let me now turn to other areas in which new directions in the treatment of mental illness are crying out to be implemented.
The first is yet another area in which new directions in the treatment of schizophrenia can be created. It's one I hinted at a moment or two ago when I spoke about treating the whole patient holistically. This one will take government action, though.
I believe that the logical conclusion of the shift towards the joint delivery of care is that the damaging and entirely false divisions in mental illness between medical and social need should be abolished. They are all part of a seamless spectrum of need. A decent flat, money for a reasonable lifestyle, a volunteer befriender, a daytime drop in - these are just as much part and parcel of the treatment and rehabilitation of the user as the depot or the handfuls of pills they have to swallow.
The next area concerns the daft but still persistent notion that becoming mentally ill means you are brain dead, that your intellectual facilities. Remember the program about the physically handicapped: Does he take sugar? I'd like to call this similar attitude to mental illness: Does he take procyclidene?
All too often the assumption is that the user can cope only with mindless tasks like basket weaving and art therapy - valuable though they may be in their place - without recognising that, apart from anything else, this is a generation brought up with computers and modern technology who would benefit enormously from what IT can offer. Interaction with a computer which doesn't have a threatening human personality is one excellent way of bringing many users back to something approaching normality in their daily lives.
The mentally ill are not subhumans, they are ordinary folk like you and me, and let's face it, one in four of us who go to the doctor are presenting with some form of mental unwellness, to put it at it's mildest, so mental illness impacts on all our lives.
I've not quite done yet. The next area for new directions in treatment is in the simple word information. Carers and users must be given the fullest possible information. Not just factual information, either. Information about what it feels like to be or care for the mentally ill, how to cope, how to react, and how others have faced the same challenges. Once again, though, that requires a cultural change on the part of the establishment. Knowledge is power, and if it gets into the wrong hands, people may actually start to challenge the consultant and ask about different forms of treatment. And that kind of thing would never do.
Dare I say that in my view, information - or rather proper access to information - has in itself a hugely important therapeutic value, especially for the carer trying to come to terms with and cope with a loved one who is in the early stages of mental illness. The knowledge that they are not alone, that there is information out there which can be tapped and drawn upon is of the greatest significance.
There's one new direction that concerns me a great deal. It comes from New Labour, from the government's apparent obsession with the notion that people who are not in work are workshy, and that the mentally ill, particularly the recovering mentally ill, are going to be caught in the trap of looking well, acting well and being persuaded that they really ought to be back in the workplace, often with devastating results when they discover too late that they can't cope.
Another area for a new direction is stigma. Briefly - and this is a large and very important topic which deserves, and has received, whole conferences to itself : Has it ever occurred to you just how good society has become at trying to legislate bad behaviour out of existence? It wasn't until seat belts became compulsory that people reluctantly started to clunk click on nearly every trip. And then there came the laws against discrimination: on grounds of sex, race, gender - even age is being touted as the next on the list of politically incorrect things not to discriminate against.
What about mental illness? It's way past time that this stigma was confronted by society in the same way as other kinds of discrimination. It will take a while, and maybe not until there are real breakthroughs in treatment, as happened with the big C of cancer which isn't such an ogre now as it used to be. But beat stigma - or at least considerably reduce it - and you bring about a vastly significant new direction in the treatment of mental illness.
Finally (one of the most keenly anticipated words in any speech). Finally - prevention. The worst aspect of the medical model of human beings has been the emphasis on treating established illness, fire fighting as it's known in many professions. Waiting until something goes wrong and then patching and mending to make it better. And let's face it, there's far more glamour and much more funding attached to heart/lung bypass operations than to cervical smears or screening for breast cancer.
It was only when consultant posts were created in the cinderella service of Accident and Emergency that this aspect of medical care gained the prominence and high profile that it deserved. How's about a consultancy or two in preventative psychiatry? Take the bottom line of what it costs to care for the long term mentally ill, and I don't just mean pounds and pence, I mean cost in trauma to the patient and his or her family, cost to the community at large, and the waste of human life and the denial of happiness and a fulfilling existence. If just a proportion of the one in a hundred could be detected and spared that first florid episode, that truly would be a great advance, a key new direction in the treatment of mental illness.
So that's it. I believe firmly that, to coin a phrase, there is more than one way to skin a cat, and new directions in the treatment of schizophrenia doesn't just lie in the hands of those researching new medical interventions. In a real sense, it's up to all of us in one way or another. We'll never entirely rid our society of the scourge of mental illness, but there's a vast amount more we could and should be doing which will mitigate its impact. We can:
- Change the culture of the deliverers of care
- Involve the carer in the delivery of care
- Banish the false distinction between medical and social need
- Don't assume the mentally ill are mentally deficient
- Put information far higher up the agenda
- Handle benefits and work issues with sensitivity
- Work towards the abolition of stigma
- And finally, embrace the notion of preventative medicine and postive mental health.
Am I hopeful that some of these things will happen? Not excessively so, as the NHS for one is a huge ship that takes an age to stop and turn into a different direction, but the signs are positive. That program on Channel 4 I referred to at the beginning of this talk, whatever the merits of the case, offered a breath of fresh air from someone prepared to think in an unorthodox and challenging way. It needs us as carers and all those involved one way or another in mental health issues to be equally prepared to think anew, to keep pressing for change, for - in every sense of the term - new directions in the treatment of schizophrenia.
