NCPC's User Involvement Project

What is it?

NCPC has been awarded with funding from Comic Relief for the following purposes:

1. To improve the way that NCPC involve service users in their work.
2. To provide guidance to other organisations in order to help them to involve service users more effectively.
3. To gather information on the needs of disadvantaged and marginalised groups about their palliative and end of life care needs.

When is it running?

April 2007-April 2010

What have we done so far?

• Looked carefully at our organisation and planned ways of systematically involving service users in all that we do.
• Produced guidance for staff and service users about being involved in NCPC’s activities (click here for resources)
• Been involved in a number of national consultations surrounding palliative and end of life care
• Investigated end of life care needs of people with chronic respiratory disease and dementia
• Linked with other organisations to gather good practice in user involvement, both within and outside palliative care
• Examined the challenges and barriers to involvement in this area
• Shared initial findings through our quarterly magazine, Inside Palliative Care and other publications
• Made contact with individuals and groups who would like to share their experiences to help improve palliative and end of life care

What’s next?

• On July 14th we will be running a national event to share our initial learning and to provide opportunities to share learning in this area. For further details contact Mridu Rana
• Continue to make further links in order to gather more views.
• Developing guidance about ways of effectively involving service users in end of life care.
• Any time now, we’ll be launching our publication “Listening the Experts” which looks at the current scope user involvement in palliative care and examines next steps in developing this further.
• Investigating the needs of disadvantaged and marginalised groups though involving service users.

For further information contact Jo Black on 020 7697 1520.

Share your experience of user involvement

We’d love to hear about experience of user involvement in palliative care, both from professionals and service users. Click here to tell us about your successes,  challenges and anything else you’d like to tell us.