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Working group 3: progressive disability and stable conditions with changing needs due to development and ageing

  • Last modified date:
    5 March 2007

An NSF for long-term conditions working group.

Members

  • Emma Bennion - Service user - Parkinson's, Norfolk
  • Julie Charles - Chief Executive, Equalities
  • *Chris Clough - Trust medical director and neurologist
  • Karen Dinsdale - DH Allied Health Professions Branch
  • Pam Enderby - Professor of community rehabilitation, qualified speech and language therapist
  • Peter Gage - Chair, National Wheelchair Managers' Forum
  • Clare Gerada - GP South London. Project manager GPs with a special interest in neurology
  • Flora Hill - Carer - Parkinson's. Member of local PD Society and research group. Formerly research physicist
  • *Jeff Jerome - Director of Social Services, Richmond
  • Jane Johnson - Nurse consultant in neuro-rehabilitation King's College Hospital, London
  • Glyn Jones - Manager, Social services disability services, Hampshire
  • Andrew Kenworthy - CE Durham Dales PCT
  • Nigel Leigh - Consultant neurologist, King's College Hospital, motor neurone disease specialist
  • George Levvy - Chief Executive, MND Association
  • Robert Meadowcroft - Director of policy and research, Parkinson's Disease Society
  • Phil Miller - Wheelchair user, MD Essex Coalition of Disabled People
  • Jane Nation - Project co-ordinator, British Polio Fellowship. Wheelchair user. Social services background
  • David Pink - Chief Executive, LMCA
  • Roger Potter - Consultant clinical scientist developing rehabilitation engineering. Member of DH community equipment group
  • Maggie Winchcombe - CE Disabled Living Centres Council
  • Liz Wolstenholme - User: Parkinson's. Chair. Airedale PCT. Formerly Head of Disability Policy Branch, DH

Terms of reference

NSF aim:

To advise the ERG in confidence on the development of a National Service Framework (NSF) for long-term conditions with a focus on neurological services, making recommendations on the areas in which standards might be set and on how these might be achieved.

The NSF will:

  • Set standards and define health and social care models for the diagnosis, treatment and care of people with neurological conditions. This will include identifying and tackling some generic issues that will benefit everyone with a long-term condition.
  • Provide an implementation guide based on processes, key interventions and service models which have worked in practice (linked wherever possible to NICE guidelines and appraisals).
  • Recommend national and local performance indicators and outcome measures as a means of monitoring and benchmarking progress.

The working group recommendations must be:

  • User and carer-centred, taking into account both health and social care needs and building on the principles of the NHS Plan.
  • Based on robust evidence or, where robust evidence does not exist, build on the best evidence available on a broad consensus of best practice.
  • Affordable and offer best value in the use of resources, making explicit where interventions will be cost and quality effective in both the short and longer term.
  • Set within the context of other policy initiatives, including the other NSFs, and taking into account the implications of new health and social care organisational arrangements.
  • Focussed primarily within the NHS and social care but linked across to employment and relevant Other Government Department policy areas.

Areas to be covered by each group include:

  • acute care including diagnosis
  • post-diagnosis and post-acute in-patient rehabilitation
  • community rehabilitation: day care/out-patient services
  • continued support for disabled individuals and their families: community out-reach/domiciliary services; drop-in services, counselling and support in the workplace and community settings with the links to other relevant agencies.

Equal consideration should be given to all areas. A key goal is to achieve or maintain maximum independence and participation (allowing for the constraints of the condition) for users.

Each working group will also need to:

  • take account of the generic issues identified in the November 2001 NSF Scoping Event report and the Neurological Alliance's document "Levelling Up".
  • take account of transitional issues including the links to other relevant NSFs and the social care as well as the health needs of users
  • take into account the views of users, carers and other stakeholders
  • consider
    - what information and support users and their carers need throughout the care pathway
    - black and ethnic minority issues
    - what information and Information Technology systems are needed to collect data on the delivery of the service as part of the supporting NSF Information Strategy
    - implications for workforce
    -  lessons that could be applied more widely to different groups of users

Additional links

Related Links

Long-term conditions information strategy

This aims to ensure that implementation of the quality requirements in the National Service Framework (NSF) for Long-Term Conditions is facilitated by the availability of the appropriate information for patients, families and carers, the general public and care professionals.

Additional links

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