Complementary & Parallel Research
Health and social care needs of young adults 18-25 with long-term neurological conditions on transition to adult services and the costs of service provision.

Lead Researchers:
Jeni Beecham, Personal Social Services Research Unit (PSSRU), University of Kent
Professor Martin Knapp, Director of PSSRU, London School of Economics.
Start Date: January 2007
email: [email protected][email protected]

Background In summarising the literature on prevalence the Neurological Alliance found that 10million people the UK are living with a neurological condition, over 8million of whom are able to manage their lives on a day-to-day basis requiring support only for short periods of time. Over 1million need some help with daily tasks and will be out of full time employment, including most people with congenital conditions, acquired brain injury or illness, and those who have had a stroke or who are living with MND, MS, Parkinson's and forms of dementia

While many are older people living with conditions that less frequently affect young people, there are also a significant number of young adults with various types of neurological condition who also require the support of adult services.

The National Service Framework for Long-Term Conditions (NSF for LTNC) lays down standards of care that those with long term neurological conditions can expect from services, for example, early recognition, specialist and community rehabilitation, vocational rehabilitation, equipment and accommodation, and personal care and support, but there has been very little work to date on the costs attached to the services that are required to enable this group of young adults to live as independently as possible.

Aims The focus of this short-term piece of work is to look at services used by people aged 18-25 with neurological conditions, and in particular to investigate the costs of services received from health, social care, education and other services as provided by the statutory sector or by voluntary and private organisations.

The research addresses the following questions:

  • What is the prevalence of selected neurological conditions in young people aged 18-25 years?
  • What services and supports do young people with these conditions currently use?
  • What other unmet needs for health and social care support do these young people have?
  • What are the costs of current and 'ideal' health and social care support packages for identified groups of young people?
  • What are the total costs of health and social care support packages for young people with neurological conditions?

What we will do and how we will do it The study will use the NSF (for LTNC) groupings of progressive, sudden onset and intermittent conditions as a framework for the study. We will then focus on specific conditions to illustrate pathways, patterns of services and costs for different groups of young adults and varying areas of unmet need. Information from existing survey data will be used to obtain information on prevalence and a literature search of published work for relevant studies will be undertaken. In addition we will gather information from relevant professional groups and from condition-specific support organisations to allow a picture of service use and the lives of these users to be described.

Project outputs A report for the Department of Health will be produced. Dissemination of the findings through journal papers and appropriate professional journals will be undertaken.


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