User Involvement Resources for Professionals

Introduction

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

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.

Resources

We are in the process of compiling resources to assist people with effective partnership working. These are listed below.

National Council for Palliative Care

NCPC Service user group produced the publication “Listening to Users” which explores how service users can be involved in developing and shaping palliative and end of life care services. It is available from the following link:

http://www.ncpc.org.uk/publications/pubs_list2.html

NCPC have recently launched a new publication entitled Listening to the Experts. It reviews research, policy and practice literature to identify what is known about user involvement in palliative care and more. For more information, click the following link:

http://www.ncpc.org.uk/publications/index.html

The User Involvement in Voluntary Organisations - Shared Learning Group (UIVOSLG)

The User Involvement in Voluntary Organisations Shared Learning Group (UIVOSLG) exists to encourage shared learning about user and/or carer involvement between medium and large voluntary sector organisations working within the UK.

Click on the link below for lots of resources about user involvement

http://www.user-involvement.org.uk/resource-centre.php

The NHS Centre for Involvement

The NHS Centre for Involvement will work with NHS staff and organisations to work with patients and the public better and help make changes based on their information.

They aim to:

• promote the value of Patient and Public Involvement (PPI);
• create a one stop shop for information and advice on PPI;
• build the capacity of organisations, staff and patient-citizens for high quality PPI;
• develop and share practical resources that aid PPI;
• generate evidence-based models and examples of best practice;
• identify and maximise learning opportunities at a national, regional and local level;
• develop and facilitate networks and communities of interest; and
• set the standard for a responsive and inclusive organisation.

Click on the link below for their website, which also includes a resource library:

http://www.nhscentreforinvolvement.nhs.uk/index.cfm?content=15&Menu=26

The Long Term Conditions Alliance (LTCA)

The Long Term Conditions Alliance have produced some best practice guides about user involvement as follows:

Developing a user involvement strategy:

http://www.nhscentreforinvolvement.nhs.uk/docs/P0010%20%2D%20LMCA%20Strategy.pdf

Good practice in user involvement:

Click here to download this document

The National Council for Voluntary Organisations (NCVO)

NCVO have recently teamed up NCPC and a number of other charitable organisations and put together an introductory guide to user involvement. This is an excellent starting point for user involvement activities and is available from:

http://www.ncvo-vol.org.uk/publications/publication.asp?id=8298

National Institute for Clinical Excellence (NICE) Guidance

NICE have published guidance about engaging communities to improve health care.

http://www.nice.org.uk/nicemedia/pdf/PH009Guidance.pdf

Shaping our Lives

Shaping our Lives, a National User Network, is an independent user-controlled organisation.They started as a research and development project but became an independent organisation in 2002. They now work with a wide and diverse range of service users who provide guidance on involvement in a wide range of settings as well as publications, consultancy and consultations.

http://www.shapingourlives.org.uk/

Patient Involvement and Empowerment

Patient Involvement and Empowerment was a conference run in May 08. This event explored involvement in a number of different areas. The presentations from this event are available from:

http://www.healthcare-events.co.uk/presentations/

Involve

Involve exists to show how public participation can positively and productively change the lives of individuals and improve the working practices of institutions. They help to improve understanding of what works and support institutions in carrying it out. Their website is www.involve.org.uk. They also provide a wealth of practical guidance about involvement on their new website called People and Participation: http://www.peopleandparticipation.net/display/Involve/Home. There is an option to ask for help by posting questions to experts.

The Picker Institute

Picker Institute Europe works with patients, professionals and policy makers to promote understanding of the patient's perspective at all levels of healthcare policy and practice. We undertake a unique combination of research, development and policy activities which together work to make patients' views count.

What they do:

• Measurement: Researching and evaluating patient experience
• Improvement: Leading initiatives that make changes happen
• Policy: Building evidence to inform health policy

It is possible to sign up for regular newsletters to hear about their activities and receive guidance.

www.pickereurope.org

Armchair Involvement

Explore how you can use technology to involve people in health service improvement.  This guide tells you:

• descriptions of the technology available
• interactive examples of where technology has been used to involve and engage people
• the advantages and disadvantages of each technology

There are opportunities for you to contribute your views (comments) on all pages. This is especially important as technology and its use is changing so rapidly. You can share your own examples of where you have used, or are planning to use technology to engage, staff, patients, carers’, service users and the public.

http://www.institute.nhs.uk/building_capability/armchair_no_comment/tools.html

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.