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Stakeholder involvement in the NSF for Long Term Conditions

  • Last modified date:
    5 March 2007

About the ways stakeholders have been able to contribute their ideas and experiences to the development of the NSF

A key theme for us in developing this NSF has been involvement of users and carers and reflecting their opinions and aspirations for themselves and the services designed to support them in the quality requirements that make up the NSF.

To this end we have worked closely with the Neurological Alliance and the Long Term Medical Conditions Alliance to ensure that the users of services and their families and carers have had the opportunity to feed in their views.

We have also ensured that representatives of statutory services and professional bodies, as well as organisations from the voluntary and independent sectors, have been invited to get involved in the working groups or to contribute in other ways.

Further information on some of the key ways by which we have achieved this are included below.  You may also like to use the links on the right to see how the Long Term Medical Conditions Alliance and the Neurological Alliance have supported us in developing this NSF including the results of their own consulation exercises which the Department helped to fund.

NSF Stakeholder Day, March 2004

The Department of Health organised a seminar on 5 March 2004 to update interested stakeholders on how the NSF was developing and invite feedback.

Members of the External Reference Group and the Department of Health's NSF team gave presentations outlining how the NSF had progressed and responded to questions.  A report of the event is available to download below.

NSF Scoping Day, November 2001

The NSF project team organised a one-day facilitated workshop on 12 November 2001. Its aim was to begin to identify the top ten key issues the NSF should address to improve the quality of life for people with neurological and other long-term conditions. This was done through a mixture of group and plenary work.

A wide cross-section of stakeholders attended, including representatives from the voluntary sector, health and social care professionals, users, carers and officials from other government departments.

Jacqui Smith, who was the Department of Health Minister responsible for the NSF at the time and Sarah Mullally, former Chief Nursing Officer and who was the Departmental Director responsible for this NSF both addressed the meeting. A key theme of both their speeches was the importance of user and carer involvement in the development and implementation of the NSF. Another was the need for a genuinely open, inclusive and constructive consultation process that really listened to the views of stakeholders.

Key questions exercise

In October 2003 we produced a questionnaire inviting anyone with an interest in the NSF to contribute their ideas and experiences, and to capitalise on the wealth of knowledge that exists across professional and voluntary organisations.

The questions were based around key issues that the ERG and working groups were interested in and were designed to help identify the practical steps to achieve real changes; highlight examples of current good practice around the country and make us aware of any evidence available to support these approaches.

We were very grateful for the enthusiastic response, and the quality of the submissions.  Responses were collated and contributors were invited to provide further detail on their services to allow us to assess their suitability for inclusion in the Good Practice Guide which is available on the home page.

The questions

  1. How should services be organised so that people receive attention from appropriately experienced professionals after emergency admission?
  2. How can diagnostic services be streamlined so that non-emergency referrals are made easily, quickly and within a time frame appropriate to the individual?
  3. How can services best meet the needs of people with neurological conditions with or brain or spinal injury who are admitted to hospital for reasons not directly connected to their condition or injury?
  4. What is the key change needed to ensure that the needs of those with rapidly progressing conditions are anticipated and met?
  5. What is the best way of ensuring continuity of services to an individual in the post-acute phase?
  6. What is the best way to allow people with neurological conditions or brain or spinal injury to easily access health and social care services when needs change, either for a limited period or permanently.
  7. How can carers and family members be supported in caring for people with neurological conditions or brain or spinal injury?
  8. How best can supported living arrangements meet the dual needs of providing an effective environment for while maximising privacy and independence?
  9. How can the palliative care needs of people with neurological conditions best be met?
  10. What are the best ways of working between community equipment services, other statutory services and non-statutory organisations to deliver seamless provision of assistive technology to people?
  11. What are the most effective ways of delivering information to people?
  12. Should responsibility for ensuring that services are organised and co-ordinated rest with a body that covers more than one PCT?
  13. What are the two or three practical local actions needed to ensure that people with neurological conditions or brain or spinal injury are not discriminated against because of race, gender or disability?
  14. Are there other examples of evidenced good practice which you would like to draw to the ERG's attention?
  15. What are the key areas where workforce issues (numbers, type of training, division of responsibilities) hinder the provision of appropriate services?

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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