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Background on the ERG and its sub-groups

  • Last modified date:
    2 March 2007

Membership and terms of reference for the External Reference Group for the Long-term Conditions NSF and its sub-groups

The External Reference Group (ERG) for the long-term conditions NSF was appointed in autumn 2002 to take forward detailed development of the NSF. The ERG included people from a wide range of backgrounds with experience and expertise in different areas. Members included service users, carers, voluntary organisation representatives, health and social care professionals and managers. In May 2004 the ERG made its recommendations to ministers on the areas in which standards might be set and on how these might be achieved.

ERG members

Chair - Diana Whitworth, Chief Executive of Carers' UK

Deputy Chair - Lynne Turner-Stokes, Professor of Rehabilitation Medicine, King's College Hospital, London

ERG members

  • Mr Alan Burns, Chief Executive, Trent Strategic Health Authority
  • Mrs Maggie Campbell, Brain Injury Co-ordinator & Consultant Neurophysiotherapist, Sheffield West NHS Primary Care Trust
  • Ms Julie Charles, Chief Executive, EQUALITIES - The National Council of Disabled People from Black and Minority Ethnic Communities, London
  • Mr Chris Clough, Medical Director and Consultant Neurologist, King's College Hospital, London
  • Mrs Marilyn Ekers, Service User, York
  • Mr Wagih El Masri, Consultant in Spinal Injuries and Director, Midlands Centre for Spinal Injuries
  • Mr David G. Hardy, President, Society of British Neurosurgeons, Addenbrookes's Hospital, Cambridge
  • Dr Maggie Helliwell, General Practitioner, Airedale PCT & Ling House Medical Centre, Keighley
  • Jackie Holt, Director of Nursing & Hospital Services, Walton Centre for Neurology & Neuroscience NHS Trust
  • Barbara Howe, Director of Specialist Commissioning, Mile End Hospital.
  • Mr Jeff Jerome, Director of Social Services & Housing, London Borough of Richmond Social Services & Housing
  • Mr Glyn Jones, County Manager - Physical Disability Services, Hampshire County Council Social Services Department
  • Mr Norman Keen, Carer, London
  • Maureen Kelly, Chair, The Neurological Alliance, Liverpool
  • Mrs Barbara Kennedy, Chief Executive, Milton Keynes Primary Care Trust
  • Helen McCloughry, Occupational Therapist & Acting Intermediate Care Manager, Nottingham City Social Services & Primary Care Trust
  • Mr David Pink, Chief Executive, Long-term Medical Conditions Alliance, London
  • Jill Stewart, Policy Manager - Health & Social Care, Disability Rights Commission, London
  • Dr Andy Tyerman, Consultant Clinical Neuropsychologist & Head of Service, Community Head Injury Service - Vale of Aylesbury Primary Care Trust
  • Dr Ian Williams, Director, North West Clinical Neuroscience Partnership, Merseyside

ERG terms of reference

NSF aim:

To advise the Secretary of State 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 ERG 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.

ERG sub-groups

Information about other working groups that supported the ERG in the development of the long-term conditions NSF.

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