Health Campaign Policy (November 2003)

1. Introduction

Health policies and the ability of health services to help people with dementia are central concerns for Alzheimer Scotland. They feature prominently in “Planning Signposts for Dementia Care Services” and the problem of postcode prescribing has not been off the agenda since donepezil was first licensed. Surprisingly there has not been a comprehensive assessment by Alzheimer Scotland of health policy issues. With the publication of the White Paper on health, Partnership for Care and the National Health Service Reform (Scotland) Bill, it is important that Alzheimer Scotland knows where it stands on the relevant policy issues.

This paper examines of some of the critical problems being faced by people with dementia and their families and considers them in the context of recent Scottish Executive initiatives; the planning, organisation and quality of services; other pressures on the health service and the potential for prevention. The paper concludes by setting out the policy positions that constitute this health campaign policy. When considered as a whole these policy positions will require a radical overhaul of dementia services in Scotland. Although this is a health campaign policy, there is inevitably considerable overlap with social care and this is reflected in the policy positions.

The Health Campaign Policy was approved by Council on 26 September 2003.

2. An initial statement of the problems

There are approximately 61,000 people with dementia in Scotland. Between 10,000 and 12,000 people should be diagnosed with the illness each year. The NHS plays a critical role in the care of people with dementia as they progress through the stages of the illness from diagnosis to palliative care. People with dementia and their families face a number of difficulties with current services.
These difficulties include:

1. a substantial number of people with dementia remain undiagnosed as having the illness;
2. poor communication/co-ordination between primary care and old age psychiatry services resulting in delayed diagnosis and access to drug treatments (postcode prescribing) for people in the early to moderate stages of Alzheimer’s disease;
3. lack of post diagnosis follow up advice, information, rehabilitation and support;
4. people with dementia who have other conditions, eg hearing loss, are not always given access to suitable services;
5. limited volume of community care services for people with dementia eg day care and community opportunities, home support and respite care;
6. lack of dedicated care management or a single point of contact for the carer and the person with dementia;
7. lack of either specialist services for people with dementia or generic services where staff have been adequately trained;
8. people with dementia who need acute medical care do not always receive satisfactory care because their dementia is inadequately recognised or staff lack training to know how best to respond;
9. variable quality of long term care;
10. nutrition problems not given proper attention;
11. lack of palliative care designed for people with dementia.

Some of these difficulties straddle the health service/social care divide and are not exclusively the responsibility of the health service. Some are already being tackled through new policies and institutions eg national care standards and the Care Commission. Nevertheless there is still much to do …

3. Recent initiatives

Although changing the NHS is probably more difficult than steering a super-tanker, it not only takes a long time but does not always go in the direction intended, this has not discouraged the Executive from trying to do so. Major health initiatives include Our National Health (2000), Adding Life to Years (2001) and Partnership for Care (2003). The first and last of these have been about adjusting the structure of the health service – initially halving the number of NHS trusts and then abolishing them. The second was intended to re-orientate the health service to reflect Scotland’s demographic structure in the 21st century and the fact that most users of health services will be older people. The other health initiative that should be mentioned is ‘Mental Health: Moving the Agenda Forward’. There has been a series of meetings, involving the Minister for Health and Community Care, service providers and users, health department officials, designed to raise the priority given to mental health services. As part of this, the role of the Mental Health and Well-Being Support Group is being reviewed.

Closely linked to these health initiatives there has been a concerted effort to increase effective working between health and community care services, Community Care: A Joint Future (2000). The importance of this has been underlined by the announcement in Partnership for Care that the Joint Future agenda will apply to all client groups and not just older people.
There are a number of recurring themes in these initiatives:

• preventing ill health by improving health and reducing inequalities
• stronger central institutions, eg NHS Quality Improvement Scotland and the Performance Assessment Framework
• giving patients a stronger voice
• improving the patient’s journey through better joint working by health and community care staff through local joint future arrangements and managed clinical and care networks.

These themes represent opportunities to improve services for people with dementia and their carers. By working with these themes there is greater likelihood of Alzheimer Scotland achieving the changes it seeks.

4. The patient’s care pathway

The concept of the patient’s care pathway can be used to bring together the health and social care problems facing people with dementia and their carers, relevant parts of recent initiatives and areas where new initiatives are needed.

The patient’s care pathway	The problems	Relevant activities	New initiatives needed
Early symptoms of dementia	Lack of public understanding of the illness, fear/denial of the illness, uncertainty about what to do	Alzheimer Scotland’s Dementia Awareness Week, public awareness campaigns, and dementia-friendly communities initiatives, over 75s screening	Larger scale public awareness campaigns, health education programmes, accessible information from Alzheimer Scotland and NHS Health Scotland
Diagnosis	Delayed diagnosis, poor communication/co-ordination between primary and secondary care, no follow up to diagnosis	Memory Clinics, Managed Clinical Networks (MCNs)	Development of MCNs, improved access to Memory Clinics, use of telemedicine in remote areas, national clinical standards
Alzheimer’s drug treatments	Post code prescribing, waiting lists	NHS Quality Improvement Scotland/Scottish Medicines Consortium, as above for diagnosis, SIGN Guidelines, pharmaceutical support	Strengthen guidance to health boards, national clinical standards
Early stage assistance	Need for support services hardly recognised	Memory clinic link workers, Early stage services, Carer Education, Advocacy, welfare benefits assistance, Dementia Awareness Week 2003	Health board recognition of the need for services for this stage of the illness, national clinical standards
Community Care	Limited volume of community care services for people with dementia eg daycare and day opportunities, home support and respite care; lack of either specialist services for people with dementia or trained staff in generic services; inappropriate services	Joint Future services,intensive care management, Care Commission and inspection against national care standards, use of direct payments to give service users increased choice and control	National clinical standards, dementia perspective in national care standards, ensuring that people with dementia have the same access to health services as the rest of the population
Admission to and discharge from acute care	Services not able to manage the ‘dementia’ as well as the reason for admission, lack of training in dementia care, lack of access to specialist advice, insufficient staff to give sufficient attention to the person with dementia, discharge may be delayed if insufficient attention is given to the patient’s dementia symptoms	Older People in Acute Care Standards	More co-operation between old age psychiatry and acute hospital care, train joint discharge/rapid response teams in rehabilitation techniques for people with dementia, national clinical standards
Long term care	Variable quality, quantity; Location unsuitable	NHS Quality Standards	Technical assistance and support from health service to assist residents in care homes whose behaviour is particularly challenging or who require palliative care, dementia perspective in national care standards
Palliative care	Lack of palliative care designed for people with dementia	Hospice movement, National Clinical Standards for Palliative Care	As above for long term care, national clinical standards

NB The list of new initiatives is not exhaustive.

5. Planning, organisation and quality

The patient’s journey approach focuses attention on the failures of service delivery as perceived by people with dementia and their carers. These failures are not only in the delivery of services but also in planning, organisation and quality of delivery.

The planning which might be expected to have an impact on dementia care is not to be found in a single plan. To date, community care plans, mental health frameworks and health plans have all contained some, if not all, of the services needed by people with dementia. The plans have been characterised by their variability and lack of attention to the detail of dementia care. The next generation of relevant plans will include community plans, joint plans for older people’s services and mental health frameworks. Often the plans, especially community care plans, have been written at such a general level as not to cover dementia adequately. The most helpful plans have been those focussing specifically on mental health and older people or older people where dementia has featured prominently.

It would be of real benefit to know exactly where dementia planning will take place in the future and what will be the relationship of the different plans. A major influence will be the Performance Assessment Framework (PAF) and the outcome agreements which will be agreed by local authorities and the Scottish Executive because what gets measured will be given priority to get done.

The emergence of community health partnerships (previously local health care co-operatives) has introduced a potential additional planning level.

Also of importance will be the Joint Performance and Assessment Framework (JPIAF) which is being developed to monitor the implementation of the Joint Future agenda.
The lack of effective joint working between health and social care has been a continuing theme for many years. The main solutions which have been pursued have been the joint planning and management of services for older people, the mental health framework and local health care co-operatives. The merit of these approaches is that they avoid the disruption that structural change would cause if there was to be a more formal amalgamation of health and social care. It is also possible to argue that this is just a stage in the move to some form of amalgamation which will happen sooner or later. Nevertheless, there is recognition that more needs to be done to effectively integrate services and this should not be restricted to health and social care. A longer term and more radical perspective would be looking at the balance of professional skills within an integrated service/workforce and possibly integrating primary and secondary care. Another development which is relevant to the way dementia services are organised is the Executive’s renewed interest in managed clinical networks (MCNs), MCNs are seen as cross cutting structures that will develop standards for services along the care pathway and integrate the different services that a patient requires. For dementia care, these will have to be managed clinical and care networks.

It is of little use to people with dementia and their carers if the services they receive are of poor quality. The Care Commission will be inspecting most of the community based services used by people with dementia but the standards which they will be inspecting against are largely generic services and are not dementia specific. Hence more work needs to be done to create a ‘dementia perspective’ which could be added to the generic standards. However, even more needs to be done to create quality assurance standards for dementia health care ie clinical standards. This was meant to be on the agenda of the Clinical Standards Board for Scotland before it was abolished and incorporated into the Quality Improvement Scotland. This needs to be a priority and put into the work programme of the new organisation.

6. Other pressures on the health service

Not only does the health service face the challenge of the problems listed in this paper but there is the political pressure to do better on problems such as waiting lists and delayed discharge. Even though increased funding has been provided to the health service and some directed at these problems, the impression, in part generated by the media, is that the health service is in crisis and unable to change. This may well be an exaggeration but it points to the problem that the health service has in living up to expectations held for it. Some commentators have pointed to the overload of initiatives and the subsequent impact on staff morale and turnover. Critical problems such as IT support for single shared assessments and the ability to recruit suitable qualified staff, from specialists in old age psychiatry to care assistants, have a major impact.

7. Is there a place for prevention?

In public health, prevention is generally accepted as having three components. Primary prevention reduces the occurrence of a disease in the population. Secondary prevention limits the progression and re-occurrence of the disease. Tertiary prevention ameliorates the consequences of disease, minimising disability and dependency and helps maintain the best possible quality of life.

Brian Cooper (2002) has reviewed preventative approaches to dementia.

For primary prevention he concludes:

• head injury should be regarded as a risk factor and therefore public safety measures eg speed limits on roads, use of seatbelts, crash helmets etc which reduce rates of head injury will tend to reduce dementia incidence
• measures to reduce vascular dementia, such as giving up smoking, exercise and better diets, will reduce the incidence of dementia
• treating hypertension and high levels of cholesterol should help.

However, it is not possible to show by how much these measures will reduce the incidence of dementia.

For secondary prevention he reviewed a wide range of approaches including gene therapy, immunisation, non-steroidal anti-inflammatory drugs, oestrogen replacement therapy, anti-oxidants and screening but finds insufficient evidence to justify preventative action or treatment.

For tertiary prevention he is cautious of the value of anti-dementia medication, contrary to the recommendations from NICE and the Health Technology Board for Scotland (now part of NHS Quality Improvement Scotland), because clinical trials restricted to the mild to moderate stages can supply only partial evidence. However, he is more positive about community support and long term care programmes for dementia. He lists 12 studies based on samples of 60 or more people that include day care, formal respite care, caregiver training and support, counselling, small group homes, staff training and psychological or activities programmes which appear to reduce or delay admission to institutions, caregiver burden and use of anti psychotics.

Cooper’s approach is helpful because it focuses attention on the possibilities of primary prevention which, although they may be modest, are a start and the more tangible evidence for tertiary prevention which is important now to people who have the illness and their families ie something can be done to help minimise the effects of the illness. It will be important to feed this information into the work the Executive is doing on mental health and well being in later life.

8. Policy Positions

This section of this paper brings together 27 policy positions under the headings of policies, structure, practice, quality and community. These are the policy positions that that Alzheimer Scotland will campaign for until this health campaign policy is reviewed. When considered as a whole these policy positions will require a radical overhaul of dementia services in Scotland.

Policies

1. There should be a national strategy for ‘dementia’ which brings together the guidance in SIGN, SNAP, national clinical standards and Planning Signposts to guide the development of services; the strategy should recognise that dementia is a complex illness, especially when there is a dual diagnosis and/or the presence of other illnesses.
2. Within national and local plans and policies, ‘dementia’ should be a distinct entity.
3. Health boards and local authorities should have distinct plans and policies for younger people with dementia and other sub-groups of people with dementia.
4. The Scottish Executive should strengthen its guidance to health boards on the availability of drug treatments in line with the advice issued by NHS Quality Improvement Scotland and the Scottish Medicines Consortium.
5. There should be greater clarity about where ‘dementia’ fits into the planning and commissioning structures of health boards and local authorities.
6. The views of service users with dementia and their carers must be brought into the planning process; the use of imaginative involvement techniques should be encouraged.
7. The Performance Assessment Framework should make more specific references to dementia.
8. There should be a review of the workforce required for dementia care over the next ten years as part of the proposed pilot project on mental health workforce development.
9. There should be awareness raising programmes that encourage earlier detection of symptoms and enhance the capacity of communities to support people with dementia.
10. The research evidence for preventative approaches should be regularly re-assessed and fed into mental health and well being initiatives, care standards and clinical standards.
11. The Chief Scientist’s Office and the Health Department should continue to sponsor research that will help improve the delivery of dementia care and support the research workforce that specialises in dementia services.

Structure

1. Core old age psychiatry should maintain its identity and be:

• integrated into community based services
• part of managed clinical and care networks which include geriatric medicine
• part of the joint management and resources of services for older people as well as those people with mental illness.

2. The roles and responsibilities of Community Health Partnerships should be clarified.
3. Community Health Partnerships should be required to co-operate on issues that require a response over larger population areas eg younger people with dementia, minority ethnic communities.
4. The joint management and resourcing of services for older people should be encouraged to develop and subsequently evaluated. If they are not found to be effective, consideration should be given to putting them under a single management structure.

Practice

1. There should be effective use of information from single shared assessment by all agencies involved in the care of people with dementia, whether they are public, private or voluntary sector.
2. When people are given a diagnosis of dementia they should also be given information about the Dementia Helpline and local dementia services. They should also be routinely offered follow up support.
3. Post code prescribing differences in the use of drug treatments should be abolished and practice in the worst performing area brought up to that of the best.
4. Managed clinical and care networks for people with dementia and their carers should be developed throughout Scotland so that people with dementia can no longer be lost between services.
5. There should be clear multi-disciplinary and multi-agency pathways to ensure that there is always continuity and someone to take responsibility for problems as they arise.
6. There is a need to increase the availability of services so that in each local authority and health board area there is comprehensive provision of services from diagnosis to palliative care. Particular attention needs to be given to memory clinics, post-diagnosis support services and community care including respite care.

Quality

1. NHS Quality Improvement Scotland should create national clinical standards for dementia care.
2. A dementia perspective should be added to the standards of the services being inspected by the Care Commission whether they are generic or specialist dementia services.
3. Services should recognise the differing and distinct needs of people with dementia and their carers eg younger people with dementia, people from ethnic minorities with dementia.
4. There needs to be an old age psychiatry and community psychiatric nursing input into long term care (residential and nursing homes) and acute and general health care.
5. Training in dementia care is essential for staff in both generic and specialist services.

Community

1. There should be more support to help improve public understanding of dementia and challenge the stigma that is still associated with the illness.
2. Positive community responses help people with dementia and their carers to live their lives as normally as possible for as long as possible, therefore there should be more work to encourage ‘dementia friendly communities’.

Jim Jackson
Chief Executive
12 November 2003