NCPC’s User Involvement Project

Year 1

What have we done so far?

• Ask the Experts: On 14th July 08 we ran a national event to share our initial learning and to provide opportunities to share learning in this area. Flyer and presentations are available from here and click here for a write up.
• We have published "Listening to the Experts" which is a summary of a year long scoping study, looking at user involvement in palliative care. It identifies current practice, challenges and next steps. Click here for further information.
• Developed online facility so that people can share their experience of palliative and end of life care online, any time of day or night. Click here for details.
• Established 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 including the recently released End of Life Care Strategy.
• 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?

• Developing further guidance about ways of effectively involving service users in end of life care.
• Investigating the palliative and end of life care needs of people from disadvantaged and marginalised groups.
• National event to launch resources and guidance to support involvement in end of life and palliative care.