Getting Involved - Introduction

What is service user involvement?

NCPC promote good palliative and end of life care for all who need it. To do this we work in partnership with experts. For example, health and social care professionals, key contacts from national charities and representatives from the department of health and government bodies.

Anyone who has personal experience of palliative or end of life care services is naturally an expert by experience. Therefore we seek to draw on this expertise throughout our work. We refer to this process as “service user involvement”, with the term “service user” being used to describe those who have personal experience of palliative care services. This can include patients, family members and unpaid carers.

How can you be involved?

There are a number of ways in which you can share your experience.  Click on the links below to find out more.

• Tell us your story now or give input occasionally to consultations or questionnaires. (Click here).
• Become a member of our policy group or committee. (Click here).
• Become a member of our Service User Advisory Group. (Click here).
• Established support groups or patient groups can also link with us to offer their input. (Click here).

In all areas we are creative to allow people to contribute from a distance.
 
What have we done so far?

Below are some examples of the kind of things we have done so far:

• Provided patient and carer input to inform the national End of Life Care Strategy.
• Investigated the palliative and end of life care needs of people with chronic respiratory disease, in collaboration with the British Lung Foundation
• Investigated the palliative and end of life care needs of people with dementia, in partnership with For Dementia and The Alzheimer’s Society.

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.

NCPC User involvement project
NCPC was granted funding from Comic Relief to run a three year project to develop user involvement in palliative care. Click here for more details.

Need help with user involvement?
We are in the process of compiling resources to assist people with effective partnership working. Click here for some links and guidance in user involvement.