Shifting the balance of health care: the role of rehabilitation services

Evidence from Alzheimer Scotland to the Health and Sport Committee of the Scottish Parliament

Introduction

Alzheimer Scotland is Scotland’s leading dementia charity. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist services such as day care, home support and carer support in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website (www.alzscot.org) and our wide range of publications. We welcome the opportunity to comment on Improving the Physical Health of those with Mental Illness consultation paper.

There are currently 59,000 to 66,000 people with dementia in Scotland, 1,350 to 1,650 of whom are aged under 65. As our population ages there is projected to be a 75% increase in the number of people with dementia in Scotland by 2031.

Dementia is a long-term condition which gradually and inexorably impairs every aspect of a person’s mental function, from memory and decision-making to the activities of daily living and personal care. The complex, unpredictable and progressive nature of the condition means that dementia has a profound impact both on people with dementia and on those who care for them.

The Scottish Government has identified dementia as a national priority and has set NHS targets for the early diagnosis and management of people with dementia.

We have confined our comments to issues which impact directly upon people with dementia and their carers.

What are patients’ experiences of rehabilitation services? How will the framework change services to patients?

Rehabilitation services, particularly those based in communities, are still fragmented and lack co-ordination and integration. In some areas there are insufficient numbers of allied health professionals (AHPs) with a remit that extends into effective community care. We are aware of one group of district nurses whose case management approach is limited by lack of availability of AHPs, causing delay in ensuring that effective care packages are in place (particularly in rural areas).

Often diagnosis affects the rapidity of response to rehabilitation input requests. It appears that those patients managed by specialist teams such as stroke management, heart failure or diabetic community liaison services tend to fare better within current systems. There are few specialist dementia teams at present. There is also often an attitude by health professionals that rehabilitation is not feasible for those who have dementia-causing illnesses, disadvantaging people with dementia.

Alzheimer Scotland welcomes more local rehabilitation services through community hospitals and the multi-disciplinary teams based there, and their key role in promoting independence and the skills required to self-manage. Direct access to rehabilitation services will be a major step forward. However, there is a risk this will add to waiting lists for assessment unless there are more professionals on the ground, implying a need for significant reinvestment and redeployment of staff within CHPs. Services need to be more flexible and the boundaries that exist between community services and secondary care services and social care services need to be managed better if the patient is to perceive services as more integrated and enabling. All of these changes will be advantageous to those with dementia.

There is also a need to consider the role of primary carers of people with dementia; They should be seen as part of the “enabling” team. Providing carers with self-management skills is therefore also essential.

At present there is almost no provision of self-management support for people with early dementia and their carers, and this needs to be remedied urgently.

What changes need to be made to workforce planning and social services to allow the framework to be implemented?

As the document states there is a need for better partnership working, better interagency liaison, and a clear identification of a key worker/ rehabilitation co-ordinator for every person within the community. This is particularly important for people with dementia, whose condition means that communication and the organisation of services needs to be as straightforward as possible so as not to exacerbate confusion. Improved links also needed to specialist services, which may require those services to have someone dedicated to community liaison work.

More flexible working patterns for those employed in rehabilitation are required , such as improved weekend services and local out of hours advice and support.

The establishment of community dementia specialist teams is key. There needs to be recognition that rehabilitation for people with dementia is not just possible but is desirable. These teams could act as “champions” for those with dementia who are self-managing and those who can remain in the community with family or other forms of support. Case management will help to achieve this, but it is difficult to see how this form of management could work without dedicated case managers attached to appropriate multidisciplinary teams.

Currently, 40% of people with dementia live in care homes. There is anecdotal evidence that the NHS is unable to deliver sufficient AHP capacity to cope with demand in care homes at present.

As more people with dementia are supported at home, there may be a reduction in use of care home places in some areas. It is crucial to recognise that AHPs must continue to deliver support in care homes and also to the greater number of people in their own homes. The former cannot be reduced to cope with the latter since the increasing age of people in care homes, and at home, will increase the level of ill-health and frailty and so the need for AHP services such as physiotherapy.

It is vital that enough people being trained to cope with this anticipated demand and that there is funding to create jobs. Training must incorporate specific attention paid to the rehabilitative needs of people with dementia at all stages of the illness.

How will the framework change the role of allied health professionals in delivering rehabilitation services?

Alzheimer Scotland would like to see AHPs working with more flexibility and delivering services not only within community hospitals or large health centres but using local non-NHS community facilities. There should be clear lines of referral and prioritisation of workload that take account of self-referral options.

Increased use of telehealth and telecare may help to overcome time and distance barriers that exist in rural locations, although technological solutions for people with dementia must be carefully individualised if they are to be successful.

How far are NHS boards, local authorities and associated bodies able to fulfil their roles under the framework?

Increasing the number of AHPs to meet the future demand requires more AHPs to be trained, so it is likely to be some years before current shortfalls improve significantly. The move towards enhancing the provision of community care and moving towards anticipatory care models is already underway in many CHPs but the shift of funding from central secondary services to be re-invested in primary services has been much slower.

There is a need to invest in the improvement and upgrading of community health facilities to meet the intentions set out in the Kerr report in all CHP localities.

Alzheimer Scotland’s recent study found serious deficiencies in the provision of core community care services for people with dementia, undermining the impact of the rehabilitative approach:

• waiting lists for day care in most councils
• a lack of specialist dementia day care and of suitable alternative to day care
• home care services under pressure and failing to support people with dementia appropriately to maintain their independence, ad a shortfall in provision in most councils
• a lack of alternatives to care homes for overnight respite
• care managers reporting a lack of understanding of dementia among some home care workers and a fear of working with people with dementia among some staff in non-specialist day care services
• a tightening of councils’ eligibility criteria making it less likely that for people with dementia will receive anticipatory care.

The report’s recommendations included:

• increased provision of specialist dementia day care and development of the level and quality of day opportunities available for people with dementia
• more time allocated to home care workers to enable a support-orientated service to be provided where appropriate, provide high quality personalised care and acknowledge that more time may be required to provide services for people with dementia than other care groups
• greater variety and choice in respite options that recognise different needs
• improved training in dementia care for staff delivering community care services to people with dementia
• clear consistent council eligibility criteria for community care services that provide understanding of how decisions are reached and ensure people with dementia receive the same level of service, in accordance with their assessed needs, wherever they live in Scotland
• increased funding now for community care services to meet the current needs of people with dementia and future funding increased in line with demographic change and the increase in the number of people with dementia.

As NHS continuing care beds reduce, it is crucial to ensure that sufficient resources remain in the NHS to deliver assessment, active rehabilitation and enablement services to the more dependent people who will be cared for in the NHS system. There needs to be a shift of resources from secondary services towards investment in community health facilities, primary care, intermediate care and anticipatory care services.

There are costs associated with training and retraining of staff to support the framework; for example the need to provide training to community nurses so that they become effective case managers rather than care managers and to improve AHPs’ skills for the wider remit that they meet in the community and to ensure that they are fully trained in the needs of people with dementia.

What barriers to the successful implementation of the framework exist? How can these be overcome?

There is still work to be done on shifting attitudes to the provision of rehabilitation services for people with dementia, which needs to be addressed through education of health professionals and support for patient advocacy groups.

Housing issues are key to sustaining people in their own homes. People with dementia, like those with other conditions, will not be able to manage at home even with good rehabilitation if their homes are not accessible or lack the right adaptations and equipment. Anecdotal evidence is that budgets are under pressure to meet demands for equipment and adaptations.

Effective local partnership working is fundamental to getting the right balance of care to meet all of these needs and to avoid cost shunting from one agency to another. This could be usefully captured in future Single Outcome Agreements.

The lack of rehabilitation co-ordinators and case managers to support older people and those with long term conditions such as dementia requires investment in training more social workers and community nurses to participate in these roles, and Alzheimer Scotland would like to see the creation of more specialist dementia community support teams.

Conclusion
We are happy to be contacted for clarification or further discussion of issues raised in our response.

Kate Fearnley
Health and Community Care Director
9 July 2008