Eye to Eye
Presenter Ruth Wishart
Discussion on Mental Health
Guests Jim Dyer, Director, Mental Welfare Commission;
Mary Weir, Chief Executive, NSF (Scotland);
Lawrence Wilson, Development Worker,
Greater Glasgow Mental Health Network.
(Transcribed by Oksana Last)
RUTH Wishart: Schizophrenia sufferers in Scotland are not receiving the service of treatment they deserve according to a report published just this week. The Clinical Standards Board for Scotland has reviewed the performance of 18 Health Trusts and Health Boards. The study found that none of them met all of the established criteria for the treatment of a mental illness which affects around 50,000 people in Scotland.
Report from NEIL Moodie: There are a thousand new cases of schizophrenia expected in Scotland every year. Most patients will require long term care and treatment and it is one of the most costly conditions for the NHS to deal with. The CSBS published its criteria in January last year. The report looks at how the health service measured up. The results reveal that despite mental health having been declared a priority by the Scottish Executive, schizophrenia is not receiving the attention it demands. Lord …… Patel is chairman of the Clinical Standards Board.
LORD PATEL: To a degree mental health has become a Cinderella of the health services and the challenge is to raise the profile of mental health services so that its address, its profile becomes the same as coronary heart disease and cancers.
NEIL Moodie: Those working in primary care are particularly aware of the problems caused by schizophrenia and how badly the condition is missing out. Certainly, compared to high profile conditions such as heart disease and cancer. Dr Alistair Noble is a general practitioner from Nairn.
Dr NOBLE : The figures that we’ve now got about cancer and about cardio-vascular disease for most of Scotland, excluding Glasgow and Lanarkshire, which are distorting the Scottish figures very badly are actually that we’re doing as well as anybody in the world. But as a GP I see an enormous number of young people with very severe mental health problems, often made much worse by drug and alcohol but underneath that very vulnerable and very very worried and anxious people and that affects not just them but it affects their family it affects their friends, it affects their work. But its not just about health and its this whole integrated approach, its about their social care, its about their housing. So what we’re seeing often is that we make people medically better and put them back into exactly the same situation. Where quite predictably they go back to their original state so we get this revolving doors pattern.
NEIL Moodie: For those who suffer from schizophrenia the battle for proper care and treatment is simply another burden to add to the misery and stigma attached to an illness, which they believe, is largely misunderstood. Maggie Keppie has been advising the Clinical Standards Board of her experiences as a patient.
MAGGIE Keppie: It’s quite frightening when you go into an acute ward for the first time and I think that if you have more information and you know what’s going to happen to you its actually a lot easier on yourself.
NEIL Moodie: The Board’s report highlights the important role played by carers and recommends new systems and support are put in place to help them. Sandra Dow whose son was diagnosed as suffering from the illness 16 years ago says that although the situation is better than it was then, there is still room for improvement.
SANDRA Dow: I think there’s the fear of stigma, the fear of isolation that stops people asking. And I think that there’s still a lot of fear and stigma about. I think the public in general still think its somewhere where they should be shut away and that’s not the attitude today which is that they want them to live in the community but it’s quite scary living in the community if you’re not terribly sure what people are saying to you and so it’s difficult, it’s a whole difficult situation and its not going to be resolved right away.
NEIL Moodie: The report does not simply criticise, it makes suggestions and recommendations for improvement. These involve better access to information and intervention. A review of the skills and composition of locally-based mental health teams and the development of better training for staff dealing with those suffering from schizophrenia. For sufferers, like Maggie Keppie, all these things are important but above all she would like to see a better public understanding and acceptance of schizophrenia and an end to some of the myths and mystery surrounding the condition.
MAGGIE Keppie: There is quite a lot of stigma attached with mental health. Everybody thinks that you’re the mad axe man. They don’t actually realise that somebody with schizophrenia can live quite happily in the community, on medication or some people without medication and you know, if you had met me on a bus yesterday I don’t think you could have turned round to me and said I was mentally ill.
End of Neil Moodie’s report.
RUTH Wishart: Here to look at the issues in more details are Jim Dyer, the Director of the Mental Welfare Commission in Scotland, Mary Weir, the Chief Executive of the National Schizophrenia Fellowship in Scotland and Lawrence Wilson whose a Development Worker with the Greater Glasgow Mental Health Network. Mary, let me come first to you first because this report, although obviously there is a cross-over with problems with other mental illnesses it dealt specifically with schizophrenia, it talked about essential criteria and desirable criteria to be met. What are the essential criteria that Health Boards and Health Trusts should be meeting?
MARY: Well, the main ones which have been outlined in the report are that there should be a systematic and flexible approach to providing information to both service users and those who support them. That was a key issue which was addressed in the standards and it’s certainly been a matter of concern to people involved with NSF (Scotland) for many many years.
RUTH: So there is something of an information gap here?
MARY: Absolutely, yes, yes. People need to know about not only about their diagnosis when that has been reached, but they need to know a bit more about their medication. For example, many of the medications for schizophrenia have quite severe side effects and people need to know what these are. They need to be involved in discussions about their care and treatment beyond medication. For example, the report has highlighted the fact that there need to be far greater availability of social and psychological supports for people within the NHS, that doesn’t even include the kind of social supports that people need when they’re not involved with the NHS, there’s a huge social care agenda. There needs to be a way of working with people which will promote a sense of recovery of people being what and who they can be.
RUTH: Jim Dyer, when Care in the Community was first introduced as a policy initiative there was a lot of cynicism about, a lot of people thinking this was just sloughing off a problem using the need to close institutions as a way of just kicking the problem into touch in the community without the support services being in place. Do you think many years later that the support is still very inadequate?
JIM: Yes, there was that danger about community care that it could have been seen as a way of saving money, closing down hospitals and so on, but it was a policy that was supported both by the mental health service and by users of the mental health service. And providing it’s properly resourced it works very well and people much prefer not to be in hospital if they don’t really need to be in hospital. But what this study shows us is that we don’t have the fully comprehensive range of service that we need to underpin community care.
RUTH: What’s missing, specifically?
JIM: It’s pointed up a number of areas, for example, as has been mentioned, carers not getting enough contact with services, not getting enough information and support. And patients seem to be getting pretty good treatment in terms of pills and monitoring of medication but not nearly enough individual treatment with psychological treatments and help with everyday living skills and so on. And another major gap is the whole service is hampered by not having good records about what it’s doing. So it’s difficult to demonstrate what it’s doing.
RUTH: Lawrence, is this an area where by and large the professionals in the field and the users of the services are in broad agreement as to what’s missing, which we’ve just been hearing about, and as to how to fix it?
LAWRENCE: I think, generally speaking, yes, I think quite a lot of professionals wish to improve the service and I think users for many years have been complaining or mentioning about the lack of services, specifically in the community.
RUTH: One thing that interests me about what Jim was saying there, he said that the services seemed to be reasonably good in terms of the provision of medication. Now for years we’ve been hearing that the community psychiatric nurses among others were overburdened because of the number of patients they were dealing with and therefore proper monitoring wasn’t possible. Is that improved greatly then?
LAWRENCE: I wouldn’t go as far as to say it’s improved greatly. I think community mental health services are still under a great deal of pressure and I think there should be not just more community mental health nurses I think there should be a wider range of type of services available between the point of someone not being too well living in the community and the need for that person under crisis to be admitted to hospital. I don’t think there’s an effective range of services.
RUTH: I was going to ask you that because I just wondered if somebody is living in the community and getting regular medication and so forth but they run into some difficulty for whatever reason, how easy is it for them to access somebody in a local mental health team to help shore them up over that period?
LAWRENCE: I think over Scotland, it would be fair to say that there’s a range of different responses. To do with Glasgow, I know there’s an out-of-hours crisis service. But I suppose sometimes there are issues maybe why that person came into crisis in the first place because of lack of contact with the community mental health team or, as I was mentioning earlier, the lack of effective services in between community mental health teams and acute admissions.
RUTH: We’ve heard you say, Mary Weir, quite often not just from users but from carers that it’s very very difficult, for instance, on a most basic level to get an emergency bed if things get to that stage.
MARY: That experience is reported by many people. I think that there are two issues there, one is as Lawrence said, what services are in place to help prevent the need for hospital admission and that can mean quite active intervention in the community and there are now models in place as Lawrence said, there is that particular model in Glasgow where people can actually receive intensive support in their homes to avoid hospital admission unless that’s absolutely necessary.
RUTH: That would be difficult to replicate in a rural setting presumably?
MARY: It’s more difficult, I think there would have to be a lot of flexibility about how that was achieved and I know that in rural parts of Scotland, quite a few individuals and agencies are looking at how that support can be delivered. I think the main thing is for people to know and that’s whether they’re services users or carers, family members who are supporting someone, that when they say they need help there will be some kind of meaningful response to that. And the pressure on health services and other services at the moment is such that at times there isn’t a useful response and sometimes the situation deteriorates until the individual has to be detained under the Mental Health Act.
RUTH: We talk obviously because that’s the nature of the problem here about the difficulties and the stress faced by users but I imagine the ongoing stress faced by carers is this is a kind of life-long condition must be immense. Tell me a bit about that.
MARY: Initially a lot of carers and families feel, when the person does reach a point where they usually in the first instance are admitted into hospital in a crisis, on average families have been trying to get some sort of help, an intervention for a period of years, up to five years before that.
RUTH: What would be the initial warning signs and symptoms then?
MARY: Well, very often families wouldn’t know, they just know there’s something wrong, there’s something not right.
RUTH: Because of the behaviour of the person concerned?
MARY: Yes, it changes from the behaviour which has been for that person, normal. One of the difficulties is that quite often the early experience of something like schizophrenia is when the person is in their teens and as we all know to our cost, or many of us know to our cost …
RUTH: … there are changes in mood in adolescence anyway.
MARY: … but, by and large what we hear from our members and the people who use our services for example, is that people have markedly changed in their behaviour. One classic situation I suppose is that the person starts to spend more and more time on their own in their room. They start to disconnect from friendships they’ve had. They can sometimes become very anti-social with everybody, not just with their families, but at other times, families just know there’s something not right.
RUTH: They can’t quite pin point it?
MARY: But once somebody’s reached the age of 16 obviously, if they think there’s nothing wrong with them nobody can require them to see a doctor and that’s one of the reasons why sometimes situation does escalate into crisis. So that by the time families are in contact with health services, they are undoubtedly dysfunctional, that’s not because they are to blame, families are not the cause of schizophrenia and that’s still quite a common myth.
RUTH: Jim, we’re living in an age of quite sophisticated chemical intervention now, so how good are the drugs in managing schizophrenia on a day to day basis?
JIM: They’re generally pretty good at dealing with what are called the positive symptoms of the illness, that is, things like having delusions, having beliefs, for example, that food is being poisoned or that somebody is being persecuted and symptoms like hearing voices. They don’t work in everybody of course, but they do in the majority of people. What they’re not so good at is what are called the negative symptoms of schizophrenia, the tendency of some people with the illness to develop symptoms like lack of activity, a kind of emotional flatness, what’s called poverty of speech, not being able to communicate very much, and so on.
RUTH: This is just anecdotal, because I’m far from being anything of an expert in this field but I have heard that some people not taking their medication, not because it was ineffective but just because of what you’ve just mentioned that flatness, that emotional apathy, and that they don’t want to live life in a monotone, if you know what I mean.
JIM: That can be worsened by the medication if the medication is an excessive dosage, but it’s a common mistake to think that these things are usually caused by the medication, these things in fact are intrinsic to the illness and are difficult to deal with and really need more psychological and social approaches which are the very things that this important survey by the Clinical Standards Board has found to be deficient.
RUTH: Well just on the subject too, of the kind of day to day living, let’s suppose for the sake of argument, that somebody has been diagnosed, the medication is appropriate to them but then, when they are in the community the bit that’s missing is what you might call the ability to live a normal day to day life because they can’t find adequate employment or because the neighbours are hostile or whatever.
JIM: Yes, that’s right. I mean there are various causes of handicap, if you like, in schizophrenia. Some of it from the illness itself but some of it from secondary consequences like difficulty getting work, like negative attitudes from other people in the form of stigma because people can be frightened about mental illness and ignorant about it, and maybe have fears exaggerated by distorted reporting in the media that tend to focus on the few scare stories about violence and mental illness.
RUTH: Well, I’m glad you brought that up because I was just going to ask Lawrence about that...
LAWRENCE: There is an education programme within secondary schools in Glasgow, and I know that there is an increasing involvement from voluntary organisations to try and get mental health education at, if not secondary school level also primary school level, and hopefully what I would wish to see is, with national TV campaigns that most education boards in Scotland introduce an education programme for schools. Because, I think, quite often when people are older it’s more awkward to change their opinions but we should maybe start with today’s generation of people within schools.
MARY: I would absolutely agree with that. NSF (Scotland) actually, in association with University of Glasgow undertook research over the last couple of years, and we published the findings in November (2001) and found that 41% of people living in the community with serious mental health problems were experiencing harassment against 15% of the general population who also formed the control sample. And many of the people were young people.
RUTH: What this brings out is that when we have a lot of money spent on health education spent in a different field, if you like, we’ve got a lot of money spent telling us what not to eat, how much not to drink, what not to smoke, all of these things. Is it the case that as far as these messages going out at national government level that this is a kind of Cinderella service?
MARY: I suppose there are two ways I’d like to respond to that, because if we’re talking about a service yes, there is a Cinderella element….
RUTH: … I’m thinking in terms of making people aware, You know, raising public profile.
MARY: Well at the moment to be honest I sometimes feel as if I’m living in two separate worlds in Scotland because there are some very exciting work happening at a national policy level which the public won’t yet be aware of …
RUTH: … give us a flavour.
MARY: The Executive are beginning a national campaign to improve the mental health and wellbeing of the population of Scotland. As part of that there is a helpline called Breathing Space, for example, which particularly targets young men, but not exclusively. And NSF (Scotland) in association with four other organisations is part of an alliance called [people too] which has been awarded money by the Scottish Executive to take forward a national anti-stigma campaign. And we’ll be doing that in partnership with local communities of interest.
RUTH: That sounds quite promising, Jim. I suppose if we are putting a more positive spin on the report from last week the fact that the Clinical Standards Board in Scotland took this on as one of their first priorities for a report must be quite gratifying for organisations like your own.
JIM: Yes, that was very welcome and encouraging and it really is very important because this is the first objective national picture of the standard of services for a major mental illness. Measuring services against agreed standards which are not idealistic standards, they are realistic standards, widely discussed with professionals, with users of services, with carers and accepted by them. And there is a great opportunity at the moment with more money coming into health in Scotland for mental health really to achieve the priority status that the Executive have given it on paper. It hasn’t always achieved it in spending terms but if well-argued cases are put forward for increased funding and this report will be a very good basis for that, then there is a very encouraging prospect that things will improve for people with schizophrenia and other mental illnesses.
RUTH: Can we take this report which was, as I said, was concentrating mainly on schizophrenia – can we take that report and use it as a template for other mental health conditions, other mental illnesses, or is it too specific for that?
JIM: No, I’m sure we can. A lot of the things will cross over to other mental illnesses. It was the approach of the Clinical Standards Board to use particular diagnosis and schizophrenia was chosen because it is a major mental illness and it tends to start at a young age and cause a fair amount of disability. But I’m sure the findings are typical of what the findings would be with other kinds of mental illness.
RUTH: Lawrence, listening to that, and in fact, listening to what you’ve all been saying this morning, is it too optimistic to say that the users and the carers and the professionals in the field of mental health are much more joined up, to use today’s jargon, than they might be in physical illnesses?
LAWRENCE: I think that is happening, more and more so. Even the funding of our own organisation in Glasgow shows a willingness to include users within the planning of services. However, I think with regard to the work that’s been done, it’s a massive piece of work I think it’s welcomed by everyone that was involved in it and it has been inclusive, but I suppose at the end of the day this produces a base line for people to improve upon and if the report is read not everyone within Scotland is achieving that baseline. So I think what’s important, now we have the standards, is to monitor and see how we improve on them and we actually meet them. And hopefully create better standards.
RUTH: Mary is agitating to get back in
MARY: I am, I am, yes. What I was saying a few minutes ago, was that sometimes I feel at the moment I’m living in two different worlds where there are some very positive, exciting work happening and there is a growing sense of partnership, I would say between everybody involved in mental health. But one of the things that Jim mentioned there was the new money coming to Scotland for the NHS, and what I read in the national press on Friday, indicated that this money is going to be used exclusively for heart and cancer. Now, they are NHS priority …
RUTH: … I don’t think that’s been decided yet really?
MARY: … well, that what was in the paper shall we say …
RUTH: … so it must be so!!
MARY: Well, it gives us a reason, it was quoting Jack McConnell and Malcolm Chisholm and it certainly gives us a reason to say well, why, when there’s three clinical priorities, the third one is mental health and it must be ensured that this time it doesn’t fall off the end of the agenda.
RUTH: Do you think in a sense that these three priorities were being hammered home a couple of years ago, Jim, do you worry that mental health might fall slightly off the back of a lorry when new tranches of money come along like this week?
JIM: There’s always a tendency for that to happen, and for it to be a Cinderella subject. People are less comfortable with it and it doesn’t hit the headlines in the same way as cancer and heart disease, and less infrequently for the wrong reasons. But I think the Executive do have a commitment to making it a priority and everybody who’s involved, users, carers, people like myself, people in the health service need to keep working to ensure that it does stay up the priority list and that it is given spending priority. There were figures a few years ago which showed that while it was a priority, in fact, the increase in spending wasn’t as much as the spending on other specialities. I believe the most recent figures show it’s just keeping pace, so it’s not actually getting priority yet. So, I think that has to happen in order to improve conditions for people with schizophrenia and other illnesses.
RUTH – but your confident that the Executive is on side?
JIM – yes I am. I think they are showing a commitment to it, they have declared it as a priority. Clinical Standards Board have given it priority and making it one of the early areas studied, so there is optimism and hope for improvement.
RUTH – have to leave it there. That’s all from EYE to EYE.
