Response to Scottish Labour Ideas for a fairer Scotland

Introduction

Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. 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 (through training programmes and support groups) 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 Ideas for a fairer Scotland.

There are approximately 69,500 people with dementia in Scotland today; this number will increase to around 127,000 by 2031 as our population ages. We believe Scotland can cope effectively by taking steps now to plan for the future. We welcome the development of a Scottish Dementia Strategy. Making the required improvements to dementia care and support will require sustained commitment by Government and the Scottish Parliament to ensure the successful implementation of an adequately resourced comprehensive long term Scottish Dementia Strategy. It will also require the development and implementation of local dementia strategies by NHS boards and local authorities working in partnership with all relevant agencies.

Third sector

We appreciate the recognition you give to the third sector for its contribution to Scotland and the call for ideas on supporting the third sector in its work. We provide individualised dementia support services and day service in 40 areas of Scotland to approximately 1,500 people with dementia, including a range of more specialised services such as service for younger people with dementia.

These services are mainly commissioned by local authorities. We tender for local authority community care contracts when there is an opportunity to provide new dementia-specific services or when one of our existing services is involved in a retender. However, as a small scale specialist provider we are often disadvantaged by local authority practices such as tendering in geographical ‘lots’ that fail to allow for the possibility of specialisation. We recognise the need to achieve good value for money, however, believe that the wellbeing of people with dementia who are users of social care services is seriously jeopardised by tendering.

Community care provision is a large and growing sector; people with dementia and their carers deserve to be supported and cared for by a health and social care workforce with the right knowledge, skills and understanding of the illness to offer the best quality of care and support. It is important workforce issues such as pay and training are addressed, so those working within the sector are rewarded for the valuable contribution they make.

Health and social care for people with dementia

The distance between receiving a diagnosis of dementia and support being put in place is significant; we are concerned this is set to increase with tightening eligibility criteria for social care and reducing levels of public sector funding. Dementia is a progressive long-term condition; there is an opportunity to engage with people with dementia and their carers at an early stage in the illness. Support can then be planned in a way that maximises their natural supports and community links.

We believe the key objectives of health and social care services must be to assist people with dementia and their carers (family and friends) to continue to live their normal lives in the community for as long as possible; and that a move to long-term care should be a positive choice, not a last resort. People with dementia and their families have a right to receive equity of access to timely, high quality health and social care services throughout the course of this devastating illness, which can last for up to 7-12 years or more from time of diagnosis.

Alzheimer Scotland Manifesto

We call for the implementation of the following key targets to provide people with dementia and their carers with the care and support they deserve throughout their journey:

Early diagnosis and support

• Equal and easy access to information and support for individuals worried about their memory.
• Equal and easy access to specialist services to enable timely and accurate diagnosis across Scotland.
• Training for GPs in dementia and what is available to help, in order to ensure timely diagnosis and appropriate support.
• Anti-dementia drug treatments available on the NHS for every person with mild, moderate or severe dementia, where clinically appropriate.
• A comprehensive network of multi-disciplinary post-diagnostic support teams across Scotland, including NHS, local authority and voluntary sector staff to provide: emotional and practical support, memory training, assistive technology, information about services, money and legal matters and to support person-centred planning alongside small individual flexible budgets.

Personalised support in the community

• Transformation of the system for funding services to increase people’s choice and control over the care and support they receive i.e. to allow people with dementia to decide what is most important to them and to find innovative ways of meeting their care needs. Early intervention and allocation of a personal budget to maintain natural supports in the community can reduce the risk of future crisis intervention which is both distressing and costly.
• Commissioners to tender for personalised services in the community for people with dementia. This will require a stop to current block purchasing of generic home care and day care services which focus on those most at risk but which fail to meet their complex and changing needs.
• A strategic commitment to delivering specialist support for people with dementia and their carers, including home care, overnight care at home, flexible and regular short-breaks. Regard for the health and wellbeing of carers.

Improve the quality of care

• Mandatory dementia care training for all health and social care staff working with people with dementia wherever they live (at a level appropriate to their remit), with an emphasis on knowledge and skills to assist communication with people with dementia.
• NHS to set a target for reduction of inappropriate prescribing of anti-psychotic drugs for people with dementia; and to ensure expert education and support for doctors who prescribe to care home residents.
• NHS boards to mainstream the provision of Dementia Nurses in general hospitals to provide training and support to medical and nursing staff providing care to older people.
• A palliative care approach to end of life care for people with dementia at home and in all other care settings.

Investment in research

• More funding for research into dementia causes, prevention, diagnosis, treatment and care; if the onset of dementia were delayed by five years the number of people with dementia in 2031 would be almost exactly the same as it is today.

Please contact me if you would like to discuss our response.

Henry Simmons
Chief Executive
October 2009