I was pleased to be able to speak at the National Council for Palliative Care conference today – “Ask the Experts: Improving End of Life Care in Partnership with Patients and Carers”.
The work of the NCPC is vital, as the issues they look at around end of life care affect virtually everyone at some time or another, whether as a carer or patient. When people interact with palliative care services they are at their most vulnerable, so involving them effectively and appropriately in shaping services and making better decisions is highly important to all concerned.
The NCPC are certainly making positive steps forward in promoting user involvement, and have recently added a sharing and feedback section to their website.
On a related note, this sharing facility reminds me of one of my all time favourite involvement websites: dipex
The Dipex site helps people to share their experiences of health and illness and does it in a very clear way using video. I think its a great site in form and function, bringing people together to share their own experiences in a powerful way.