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	Users & Carers

	Useful Links

	Getting Involved

	Introduction

	Share your Story

	Join our Reference Forum (SURF)

	Join our Advisory Group (SUAG)

	Join our Standing Committees

	Links with Organisations or Groups

	Involvement to Impact Awards 2008

	User Involvement Project

	Year 1

	Year 2

	Resources for Professionals

NCPC’s User Involvement Project

Year 2

Improving our user involvement

More service users involved
Involving service users in all NCPC activities
One of the service users involved in our work became a trustee.
Induction, training and support given to new and existing service users
Marketed “share your story”: www.ncpc.org.uk/users/share_your_story.html


	Sharing our learning

	Conferences		Ask the Experts – July 08 and Ask me What I Want – July 09


	Guidance		Collaboration with National Centre for Involvement (NCI): We have produced practical guidance and an educational tool about how to involve patients, carers and the public in palliative and end of life care.


	Involvement to Impact Awards		A specialist services category was set up to allow entrants from palliative and end of life care to showcase examples of effective involvement in NCI’s Involvement to Impact awards. The winner and runner up were both examples of user involvement in palliative and end of life care. Involvement to Impact Awards


	Organisational development projects		NCPC worked with NCI to carry out two organisational development projects exploring ways of involving patients and carers in end of life care commissioning: Liverpool PCT: Existing patient and public involvement (PPI) activity in all areas including end of life care was explored. This showed that commitment to PPI was good, but that they had not yet found ways to systematically involve service users in end of life care commissioning. Plans have been developed to pilot existing PPI approaches in the area of end of life care and long terms commissioning. Progress will be monitored over the next year. Haringey PCT: NCPC is currently working with Haringey PCT to explore creative ways of involving people with dementia and their carers in planning end of life care, both at personal level and to influence commissioning.


	Articles, workshops and websites		Inside Palliative Care: A special edition of our regular publication was produced, featuring service user and professional accounts of involvement both at an individual level and in improving services for others.


	End of Life Care Journal		An article was written to demystify user involvement and demonstrate ways of involving patients and carers in palliative and end of life care. Available free from: End of Life Care Journal


	Website		Resources about user involvement are available on NCPC’s website here.


	Workshops		Workshops about user involvement were delivered at NCPC and partner organisation study days.


	Making people’s palliative and end of life care needs known.

	Influenced national policy and strategy		Service user views influenced the new NHS Constitution and National Dementia Strategy resulting in end of life care featuring prominently.


	Influenced good practice		Lessons learned from service user experience informed good practice guidance for professionals. For example, NCPC publications: A Breath of Fresh Air and Out of the Shadows. Available from www.ncpc.org.uk/publications. They have also played a key role in developing guidance for older, frail people with multiple conditions at the end of life, and Planning for Your Future Care. Caring with Confidence Training: NCPC helped develop training materials for the program to support carers in end of life care. Books Beyond Words: NCPC helped develop a resource for people with learning disabilities and their carers to support formal and informal carers, friends and families as they have discussions around end of life issues. Books Beyond Words


	What’s next?

	DVD “Disadvantaged Dying”		We will produce a DVD exploring the palliative and end of life care needs of people who are marginalised and providing examples of good practice – Launch date: Spring 2010.


	User involvement in palliative and end of life care: Toolkit		Toolkit containing practical guidance about user involvement in palliative and end of life care including case studies and learning points. Spring 2010.


	National Conference		To launch DVD and toolkit and share more about the palliative and end of life care needs of people who are marginalized: Spring 2010


	Continue to improve user involvement at NCPC		We plan to involve more service users within our work, use creative methods of involvement, and hold an open meeting for members of external reference group.

NCPC’s User Involvement Project

Year 2

Improving our user involvement

Sharing our learning

Making people’s palliative and end of life care needs known.

What’s next?