Myth, Prejudice & Reality - an SHA Mental Health discussion paper

CONTENTS

1. Introduction
2. The background to recent developments in mental health
   1. The development of care in the community
   2. The dangerousness debate
   3. A national strategy for mental health
   4. Legal debates
   5. Funding long term care
3. Problems around mental health policy
   1. Lack of investment
   2. Poor co-ordination between health and social services
   3. Lack of national co-ordination
   4. Complicated funding arrangements
   5. Public attitudes
   6. Increased poverty
   7. Race
   8. Bed pressures and "diversions from custody"
4. A way forward
   1. Strategy
   2. Education
   3. Users
   4. Primary Care
   5. Commissioning
   6. Increased resources
   7. New drugs
   8. Prevention
   9. A wider view
5. Conclusion
6. Glossary

1 INTRODUCTION

The government issued their White Paper on Mental Health - "Modernising Mental Health Services - Safe, Sound and Supportive" - in December 1998. In his Foreword Secretary of State for Health Frank Dobson stated:

"Care in the Community has failed. Discharging people from institutions has brought benefits to some. But it has left many vulnerable patients to try and cope on their own. Others have been left to become a danger to themselves and a nuisance to others. Too many confused and sick people have been left wandering the streets and sleeping rough. A small but significant minority have become a danger to the public as well as themselves."

While SHA can see elements of truth in this statement, we feel that to say care in the community has failed - and focus overwhelmingly on examples of failure - is the wrong starting point. It is more geared to the tabloid agenda than to serious debate around policies for mental health.

This paper attempts to analyse some of the major problems faced by mental health services and the people who use those services. We attempt to highlight the direction for future policy development, focusing on adults of working age (18 - 65). We recognise that further contributions are necessary about the different needs of services for children and adolescents and for older people.

This paper was written prior to the publication of the Government’s long delayed National Service Framework for mental health services. We hope we can provide some concise and useful background, and suggest questions for people looking at that report.

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2 THE BACKGROUND TO RECENT DEVELOPMENTS IN MENTAL HEALTH

2.1 The development of care in the community

One of the great myths that seems to have captured general belief is that care in the community is a recent phenomenon and has only been national policy in the last decade or so. In fact care in the community has been the policy of successive governments of different political persuasions, and can be traced at least as far back as the early sixties when Enoch Powell was Health Minister. Even the 1930 Mental Treatment Act can be seen as breaking the monopoly of institutionally based mental health services.

Undoubtedly the pace of closure of large institutions has grown since 1980, even if the policy itself has been around much longer. One of the most significant factors which led to the speeding up of the closure of the long stay hospitals were Social Security rule changes in the early 1980’s. These meant a massive growth of private and voluntary sector residential care homes opened for people coming out of hospital. The DSS budget for these higher levels of income support payments for people in registered care homes rose in 10 years from £ 10 million to £ 1.5 billion.

2.2 The dangerousness debate

The 1990's though have seen mental health policy discussions dominated by issues around dangerousness and the pressures on beds in acute admission wards which were highlighted by independent enquiries. The Clunis report in 1994 is perhaps the most well known. This report into the killing of Jonathon Zito by Christopher Clunis was scathing in its criticism of the poor co-ordination between all agencies involved in Christopher Clunis's care. Numerous reports since then have all re-iterated this point - the health and social care divide breaking down.

The previous government's response to this was twofold :

1. They introduced the Care Programme Approach in 1991 which was meant to introduce a seamless dimension to the planning and provision of healthcare. Patients discharged from hospital would have a key worker, a care plan and regular reviews of their care
2. They introduced some knee-jerk measures (a ‘ten point plan’) designed to meet the growing public and media clamour around dangerousness. Supervision Registers were introduced, the Mental Health (Patients in the Community) Act 1995 was passed and more stringent tests were introduced by the Home Office before restricted patients were discharged

None of these measures amounted to anything resembling a Mental Health Strategy. Therefore, it was very welcome that the new Labour government announced that it would be introducing a National Strategy for mental health.

2.3 A national strategy for mental health

The White Paper which sets out this National Strategy was launched on 8th December 1998. Some of the key features of the White Paper included :

• Expanding the numbers of assertive outreach teams
• More 24 hour staffed accommodation
• Focusing on early intervention
• Some extra money for greater use of newer medication
• Increased 24 hour crisis services
• Improvements in training for staff

The White Paper claims to be steering a third way in between a return to the old days of the institution and the perceived failure of community care.

A sum of £ 146 million is announced as new investment in mental health. Whilst this is technically true the money is announced and then re-announced, first as a global sum, then when allocated to specific projects. This can raise expectations on the ground that are not going to be matched by the resources which become available. A further problem is that the criteria set for funding the additional services that new money is directed at are very tight. Most managers, professionals and users alike will state that existing services are stretched to breaking point - while new services are always welcome and necessary there needs to be a boost in the investment in the existing infrastructure.

Another announcement expected shortly is the National Service Framework for mental health. The National Service Framework will for the first time lay down a series of minimum standards against which services across the whole country can be judged. It will ensure that there are no backwaters and that are clear standards. The targets which it sets for services are likely to be raised each year, aimed at tackling under-performance and poor standards.

An External Reference Group under Professor Graham Thornicroft has been established to produce the National Service Framework. It is disappointing that this work has become so drawn out. Emerging findings were promised in October 1998 and never appeared. The final document was promised at the end of March and remains due shortly at the time of writing (early September 1999).

It is to be hoped that the National Service Framework will not be subject to more delays, which will mean delay in setting the minimum standards which it promises.

2.4 Legal debates

Alongside the National Service Framework the other key development from the white Paper is a review of the 1983 Mental Health Act. This forms the legal framework within which current mental health services are delivered. A Mental Health Act Review Committee (or ‘Scoping Study Review Team’) chaired by Professor Genevra Richardson reported to ministers in July 1999, though its findings will not be published until later this year.

The review was asked to look at the legal framework for services which are delivered more in community settings and less in hospital ones, and was in effect asked to establish a system for compulsory treatment in the community - addressing “the responsibility on individual patients to comply with their programmes of care” (Paragraph 4.27 of Safe Sound & Supportive). In a sense this is being set up as the ‘answer’ to the ‘failure’ of community care.

Whilst a review is overdue we would be opposed to any new legislation which merely introduces increased powers to control people diagnosed as mentally ill - the proposed new Community Treatment Orders. There are enough compulsory powers within current mental health legislation - the Supervised Discharge provision introduced in the 1995 Act is already there but little used. Effective treatment relies on a therapeutic relationship being built up between the patient and the professional - more coercion will erode this therapeutic process.

A related development is around the legal position of people with limited or no capacity to express a view on what is happening to them. Questions about whether people had consented to be in hospital were discussed in the courts over the Bournewood case in 1998, and the present law is widely seen as unsatisfactory. A review is underway. This work on incapacity particularly affects very confused older people and those with the most severe learning difficulties.

(The mental health of older people will be addressed in a National Service Framework for the health of older people generally due to be published in 2000).

Finally in the legal arena there is renewed debate around the issue of severe anti-social personality disorder and how this should be handled.

With Thomas Hamilton in Dunblane and the recent case of Michael Stone, along with the Fallon Report into the running of the Personality Disorder Unit at Ashworth Hospital there have been cries for something to be done, though very little constructive ideas about what can be done for a condition that is largely seen as untreatable. It is arguable whether the Mental Health Act should be used in these instances at all.

Home Secretary Jack Straw has announced that a power of reviewable detention will be introduced for people who pose a threat to public safety, whether or not they are have committed any offence. We are concerned about the civil liberty aspects of this measure, which conflicts with the European Convention on Human Rights and could in time spread to wider groups. We call for a much wider and better informed discussion before such draconian measures are pursued.

2.5 Funding long term care

A final strand of policy which impacts on mental health is the funding of long term care. We are disappointed at the response to date of the Government to the Report of the Royal Commission on the Funding of Long Term Care which proposed the separation of the housing cost elements of residential and nursing home care (which people would still be expected to meet themselves) and the nursing cost elements (which would be funded by the NHS).

The SHA felt the Royal Commission had put forward a workable and affordable solution which we are been disappointed is not been picked up.

3 PROBLEMS AROUND MENTAL HEALTH POLICY

As we say above we feel it is important that sensible and considered responses are made in relation to mental health. It is too easy to jump on the bandwagon and say that 'closing the large institutions has failed - just look at the number of homicides committed by ex-psychiatric patients.'

However, we would contend that the majority of people who came out of the institutions have been placed in supported accommodation of a high standard. The real issue is what services, or lack of services, were built up to meet the needs of the people who would have previously gone into the institutions.

Taylor and Gunn in the British Journal of Psychiatry (1999, 174, pp 9-14) reviewed homicide statistics and concluded that there was although there were a very few more killings committed by psychiatric patients than there were 40 years ago, as a percentage of all homicides they have dropped dramatically.

Some of the key problems we identify are as follows :

3.1 Lack of investment

There has not been the investment in the infrastructure of mental health to replace the institutions. This does not only relate to beds because the institutions were far more than that. They had a network of facilities from day-care, space and social contact that has not been replaced. It is also not clear exactly where all the capital from closures and sales of land has gone, as a large number of these buildings are now either housing developments or supermarkets.

3.2 Poor co-ordination between health and social services.

Enquiry after enquiry has been extremely critical of the lack of co-ordination at a local level. This extends to housing services, the police, courts, and primary health care as well as mental health services and social workers.

Having so many different agencies involved in the care of people with mental health problems inevitably results in some people falling through the gaps, and allows bureaucracies to spend too long fighting turf wars or passing the buck when things go wrong.

The Partnership in Action Government consultation paper was extremely welcome. It proposed that health and social services bodies could work together through pooled budgets, one body leading the commissioning of services in a particular area, and one public body providing services to the other in ways which go beyond what is allowed at present.

It received very little publicity but if implemented through the current Health Bill, with discretion for local flexibility, then it could go a long way to overcoming some of the problems of poor co-ordination. Our only reservation would be if the acknowledged “democratic deficit” in the NHS were to spread to social care, with quangos rather than locally accountable elected representatives taking key decisions.

3.3 Lack of national co-ordination.

It is remarkable how stark this can be at times. The NHS at a national level introduces a system called the Care Programme Approach whilst local government is told to introduce the Care Management system - two process for different professional groups that do not always overlap.

Failing to join up thinking is not just a local-level phenomenon.

3.4 Complicated funding arrangements. One of the most obvious failures of national policy co-ordination is around funding. Different funding systems are frequently not co-ordinated. Housing funds cannot be spent on social care, social services funds cannot be spent on health care and health funds cannot be spent on social care - however, the difference at a practical level between someone’s housing, health and social care needs are almost indistinguishable. Again the proposed reform of the funding of social housing will assist with this as long as it is not used as passing over another problem to local authorities.

3.5 Public attitudes.

There remains a high degree of prejudice against people who have experienced mental health problems. Users frequently report discrimination at work, in obtaining mortgages, etc. if they have identified as being a current or former psychiatric service user. Unfortunately this problem has been compounded in particular over the past five years since the case of Christopher Clunis because of sensationalised tabloid and other media reporting of mental health matters - when was there last a good news story about mental health story in the papers! This has made planning of mental health services extremely difficult because there will usually be widespread public opposition to any proposed new mental health facility.

3.6 Increased poverty.

Much has been written about the creation of a new underclass within Britain. It is our view that this has contributed to the growing number of incidents of mental distress particularly within inner cities. Growing numbers of homeless people in particular have led a large number of service users that fall outside of mainstream service - those described as difficult to engage.

Assertive outreach services try to have experienced staff with small caseloads supporting people who need the greatest support, but they often also have a dual diagnosis - drug and/or alcohol problems as well as mental health ones.

3.7 Race.

Again this is something that has frequently been commented upon although few solutions have been found. The numbers of black people within the mental health system is disproportionate to their numbers within the wider community. This is even more evident when you look at the numbers of people detained under the Mental Health Act and in secure facilities such as Special Hospitals. Different ethnic groups make differing use of services, with the experience of Afro-Caribbean men in particular being at the ‘sharp end’ of the system. Whether this is as a result of services which cannot engage appropriately with ethnic minorities, racist stereotyping resulting in more compulsory admissions, or the pressures of a racist society creating more mental distress is unproven. It is regrettable that the National Strategy paid such little reference to these issues.

3.8 Bed pressures and ‘diversions from custody’.

Inner city health Trusts have for some years regularly reported bed occupancy levels well in excess of 100% (up to 200% in some cases), and this is a growing problem throughout the mental health system. Patients on home leave have their beds used for other patients, people are sent home to make beds for others to come into hospital and people are waiting in casualty departments, police cells or at home to come into hospital. The mix on acute mental health wards has changed as more people there are detained under the Mental Health Act and/or are more distressed or disturbed while there. This has also led to increased pressure on staff, greater stress, sickness and burn out and an increased reliance on agency or other casual staff to keep up staff numbers. This undoubtedly affects the quality of care which can be delivered.

This is a symptom of some of the problems identified above, but is also as a result of growing referrals from prisons and courts where there is an understandable desire to have people with mental health problems treated within the NHS rather than just contained within the criminal justice system. Resources do not however appear to have followed these people, and the White Paper recognises they are frequently inappropriately placed on normal mental health wards rather than in more secure provision.

4 A WAY FORWARD

4.1 Strategy

There needs to be a national, co-ordinated strategy for mental health services - the government's Strategy launched on 8th December and the forthcoming National Service Framework will be a start but only a start in producing a comprehensive strategy for mental health services. Crucially the government must say who is to plan and commission what services (as explained at 5 below). Such a strategy must include all relevant government departments and also be reflected in co-ordinated local strategies.

The present policy focus is on people with severe and enduring mental health problems, who are or have been using hospital services. The debate needs to broaden out to properly address the mental well being of the population as a whole. Proposals around services must clear away all the petty obstacles that currently prevent joint working and prevent the buck passing that have been so apparent. There should also be planned piloting of mental health Trusts where social services and health services are fully integrated.

4.2 Education

Public education must resurface at the top of the agenda. This is partly about combating stigma, prejudice and negative stereotypes, but is also about developing people’s understanding of mental health generally. It has been very difficult to take any initiatives on this front without having the constant battle against a suspicious and fearful public and media backcloth. The lead must come from a national level and it has to be accepted that this will take some time. It should also start early in schools so that children do not develop entrenched views about mental illness largely shaped by media stereotypes.

4.3 Users

The user agenda must be developed. There is a growing user/survivor movement in this country which has many good ideas about how services should be developed. In other European countries such as the Netherlands their user movement is much more established, contributes to the public debate and gets itself involved in local decisions about how services should be developed.

It should be mandatory on each mental health unit that they establish and fund an independent Patients Council, and that Health Authorities support independent advocacy schemes.

4.4 Primary Care.

Most mental health interventions still go on within primary care and these should not just be dismissed as the “worried well” or demanding neurotics. Because the emphasis to now has understandably has been on the needs of people with severe and enduring mental health problems it has meant that all the focus has been on the hospital sector. This has meant that there has been very little attention towards prevention. Examples of home treatments teams such as in South Birmingham, integrated GP and CPN services in Enfield have indicated that investment in prevention or early intervention is both better valued by service users can also prevent hospital admissions.

4.5 Commissioning

Exactly how new Primary Care Groups (PCGs) as commissioners of services will influence mental health services is currently unclear. Whilst greater GP involvement in the development of mental health services is welcome it is essential that PCGs must not be allowed to fragment the service even further, especially when it comes to developing joint commissioning arrangements between health and local authorities.

The future development of Primary Care Trusts (PCTs) which provide as well as plan local community health services may also threaten the future of many existing combined community and mental health service Trusts, leading by default to mental health-only Trusts coming into being. If these are to be created they should be planned-for creations rather than just developing accidentally.

We strongly hope the National Service Framework will resolve these uncertainties.

4.6 Increased resources.

The old institutions were a failure, but they did offer a range of support that does not currently exist within the wider community. These services - high support accommodation, social and recreational facilities, access to employment, crisis houses have not been well developed when services are reprovided on the closure of institutions. The £146 million in 1999/00 is welcome but it barely gets us back to the level of resourcing that existed about 10 years ago.

4.7 New drugs

The White Paper addresses the issues of the benefits of the newer anti-psychotic drugs. These are better tolerated by patients, with fewer side effects, but particularly some can deal with negative symptoms (the tendency to withdraw, become isolated) as well as the positive symptoms (voices, delusions) which the older ones did. One drug in particular, clozapine, has been seen as a ‘wonder drug’ (and attracted high profile media coverage as such) but can cause a white blood cell disorder leaving people very vulnerable to infection, and a rigorous blood testing system has to be used.

These drugs are expensive, are rationed in some health authorities and some money is being made available next year to ensure more general use. There remains an argument over whether they should be used earlier, in preference to older, cheaper drugs with more side effect problems, or remain drugs resorted to only when others have not helped.

4.8 Prevention

Enhancing the role of prevention is vital. Too much of current mental health policy and services are geared towards crisis resolution. Whilst this is understandable in the context of tight resources and growing demand it has meant that preventative services struggle for recognition. A certain proportion of health authority and local authority funds should be ring-fenced for preventative services and all mental health plans must clearly state how prevention of mental ill health is being tackled. In addition to early intervention with serious mental illness we need to consider how joined up thinking strategies can be developed around:-

1. how people can be helped to tackle stress in relationships, organisational stress in the workplace, deal with loss and the psychological effects of physical ill health
2. the long term impact of child abuse and domestic violence
3. teaching people to view mental health positively, learning to recognise stressors and develop coping strategies, particularly in schools
4. post natal depression and the mental health of mothers of young children generally
5. people presenting with deliberate self harm and ‘parasuicide’
6. issues of self image, anorexia and bulimia

4.9 A wider view

Joined up thinking has also to affect other public policy areas. Welfare reform crucially affects users of mental health services, there remains a need for tougher disability discrimination legislation and other areas have a mental health dimension.

Just has the government’s new Public Health White Paper Saving Lives recognises that all government departments’ activity impacts on our health generally, it needs to refine that to looking at how so much impacts on our mental health in particular.

5 CONCLUSION

From all the above we hope it is recognised that the debate around mental health services needs to be a measured one. The serious incidents that have occurred cannot be minimised nor should they be, however, they must not be allowed to dominate the discussion about an area of policy that has been neglected for many years.

The government's White Paper strategy is welcome and many areas can be supported. However, it is only a start and it needs to lead to this area of policy receiving much more prominence than it has for many years.

Roger Harris, with David Pickersgill

September 1999

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6 GLOSSARY

Assertive Outreach	an approach by which teams of experienced mental health professionals support people in the community who may be difficult for general mental health services to deal with
ASW	Approved Social Worker - a qualified social worker who has done further training in mental health and has a range of powers under the Mental Health Act
Clunis	Christopher Clunis had a history of severe mental health problems before he killed Jonathan Zito on the London Underground. This was one of the highest profile cases of homicide by a person with mental health problems, and the report into the failure of services to understand and deal with his problems was very influential
CPA	Care Programme Approach - a process, based on national guidelines but with local variations, by which each person who comes into contact with specialist mental health services has one named professional responsible for assessing their care needs, co-ordinating the input of various professionals and regularly reviewing this
CPN	Community Psychiatric Nurse - a qualified mental health nurse, often with an additional qualification, working with people in their homes, at local clinics, etc., rather than in hospital
Depot	an injection of medication which can last for several weeks
Dual Diagnosis	where people have both drug and/or alcohol problems in addition to a serious mental illness
ECT	Electro-Convulsive Therapy - a controversial treatment, mostly for severe depression, which involves passing a small electrical current through the brain (under anaesthetic) to produce an epileptic-type seizure
MHA	Mental Health Act - the main body of law in England & Wales, passed in 1983 and amended in 1995
MHAC	Mental Health Act Commission - the main body responsible for monitoring the use of mental health law. They visit places where patients detained under the Mental Health Act are cared for, investigate complaints they receive, produce a report to parliament every two years and advise the Government on legislation
MHRT	Mental Health Review Tribunal - a body which externally reviews the detention of people under the Mental Health Act and can overrule an RMO to release a patient
MIND	the National Association for Mental Health - the leading mental health charity, which lobbies for better rights and services for people with mental health problems, and provides information, training and some services
NSF	National Schizophrenia Fellowship (now called Rethink) - a leading charity for people with severe mental health problems
NSF	National Service Framework - a promised document setting out how services should be organised and minimum standards for services across the country. Eventually there will be a range of NSF’s, e.g. for mental health, older people’s services, etc
OT	Occupational Therapy - a approach to helping people with problems through constructive activities. Qualified Occupational Therapists working in mental health do counselling, groupwork, etc.
Organic	used in mental health to describe problems caused by degenerative changes in the brain, e.g. in Alzheimer’s disease
PCG	Primary Care Group
PCT	Primary Care Trust
Psychosis	a mental health problem where a person sometimes does not understand they are unwell, and at times may not be in control of their behaviour
Richardson	Professor Geneva Richardson chaired a review group on mental health law, whose report is to be published in Autumn 1999
RMO	Responsible Medical Officer - a consultant who is in overall charge of someone’s treatment
SANE	Schizophrenia A National Emergency - a mental health charity focusing on support people with severe mental health problems and their families
Section	like all laws the Mental Health Act is divided up into Sections. It is quite common to refer to someone detained under the Mental Health Act as being "sectioned" or "on a section"
Supervised Discharge	a power, introduced in 1995, by which a person can be discharged from hospital on conditions (e.g. where they live, where they attend for day care, etc.) and if they do not follow these directions they can be recalled to hospital for assessment
Supervision Register	a system by which health and social services jointly hold a record of people with severe mental health problems living in their area who may present a severe risk
Survivor	some people who have used mental health services feel the system has not properly met their needs. They use the term survivor to describe themselves, rather than patients, clients or service users
Thornicroft	Professor Graham Thornicroft is leading work on the National Service Framework for Mental Health