Notes from the field of public involvement

Thursday, 01 December 2005

What works in user involvement

A candid view of what M-A-C Partnership has learned from doing it during the past four years

This presentation was made by Val Moore and me at the inaugural meeting of EDVANCE - the London network for user & carer involvement in health & social care education on 15 November 2005.

What we've done and for whomWhat we've learned
"Stronger Voice in Health in Wandsworth" community-based capacity building pilot project

National Consumer Council, Wandsworth Borough Council and Balham, Tooting and Wandsworth Primary Care Group: 2001
Participants like "local" engagement; want to know how things (committees, agendas etc) work so they can influence them; have modest expectations of success despite widespread cynicism towards bureaucracy
ICAS (Independent Complaints Advocacy Service) pilots. Westminster pilot ICAS training; 19 national ICAS pilots benchmarking evaluation

Dept of Health: 2002-03
Users need "hands on" skilled help to articulate and progress their concerns; personal access preferred to electronic; complainant satisfaction (or not) affects "willingness to recommend" to others; non-NHS providers can be "cold-shouldered"

This work was meant to help Patients Forums, but the national ICAS contract remains with Department of Health.
Development work with Pilot Patient Forums
  • Consultation – open "experience exchange" with no fixed agenda with stakeholders
  • Development and capacity building - local training (Wandsworth and Camden);
  • Research and evaluation - "recruiter and recruited" study
    Modernisation Agency: 2002
Very open and unstructured events are productive – have confidence in the practitioner experience; clarifying values and beliefs about PPI the essential first step; a "pathway" capacity development approach works; penalty-free participation essential; training is valuable commodity even if serving on Forums is unrewarded; professional management and support valued; links and allies wanted; "recruitment" efforts by local Forums highly variable
PPI in Secondary Care

Epsom and St Helier NHS Trust: 2002-03
Lots of existing activity involving users within large hospital, but not connected up; no learning drawn out to show PPI adds value; PPI progress and user/staff enthusiasm at risk from key senior staff changes
PPI awareness for Primary Care workshops on "involving patients in decision making to improve the user experience" and "managing patient expectations and experiences"

Wandsworth PCT South Locality: 2004-05
Front line primary care staff are largely "heads down" coping with work and many see PPI as creating "more work" and unrealistic patient expectations; they need help understanding how PPI can help them achieve targets and objectives within practices
Patient participation groups Group evaluation; outreach seminar for Wandsworth practices

Balham Park Surgery Liaison Group: 2003-04
patients like participation groups because make a bigger difference than as individuals; practices benefit too (IPQ, QOF, practice-based commissioning decisions etc); key person to get a group going is the practice manager; lots to learn about the practice that they don't know about as individual patients; local PCT needs to be supportive but not controlling. Participation in practices is a long term commitment
Patient and Public Involvement Forums and Forum Support Organisation

Wandsworth PPIFs and SCOPE FSO: 2004
Local PPIFs were desperate for support and professional leadership; support organisation staff were enthusiastic but lacked experience and NHS knowledge; ineffective relationships between Forums and CPPIH created a flawed arrangement that training alone could not remedy.
Foundation Trust Governors Development programmes

Homerton, Basildon and Thurrock and South Essex Partnership Trusts: 2004-06
FTs must be a big part of the future for user engagement and lay representation; huge and evolving area of governance and community participation; much confusion about role and power of Governors; hard work reconciling idea of social ownership, "membership" and engagement between Governors and Board; doesn't supplant existing PPI initiatives but will probably make PPI Forum in FTs redundant as Governors expand their roles.

The Practical Context for Patient and Public Involvement
M-A-C Partnership's views on "what works in PPI" based on our national and local experience

Finally, the most important lesson of all – organisations get the PPI they deserve.

Contrast "angry and subversive; timorous and passive; uninvolved and absent"; with "passionate and direct; open and courageous; committed and present". Which would you and your organisation prefer? What can you do to get the best from involving users? There is a simple answer: Lose the Fear of PPI as "PPiB" – public pain in the bum.

The organisation that gets the most from PPI is the confident organisation in charge of its own future with the ability to welcome user/ external views and a host of critical friends and then is able to DO SOMETHING WITH THEM. If you don't ACTION THAT INPUT then the rest is just tinsel on the tree.

Andrew Craig | Send feedback