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 whom||What 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
||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
- Recognise and appreciate what motivates lay people to become involved and stay involved
Don't make assumptions about motivation. Participation is always a choice for users and there are competing demands on their time. "Wanting to give something back" and "making sure others don't have the same experience I did" are both common. Understand what a "win" looks like and feels like from the user standpoint. Be ready to learn a lot. Your views about what's important will be challenged!
- Clarify values and beliefs about patient and public involvement
A fundamental joint process between providers and users. Evaluated pilot experiences showed a high degree of shared belief that enabling informed and empowered patients, carers, and members of the public to be "active citizens" is a good thing; affecting decisions about their health and health services is a moral good in itself. Translating beliefs into actions – the really hard part!
- Develop an organisational structure for user involvement
There has to be a rational organisational structure for PPI which identifies existing and anticipated relationships within and across organisations; it needs to be a managed function but not a "controlled" one.
- Recruit or identify staff to support the PPI work
Professional staff and well-supported lay members are indispensable at the core, but their role is to outreach and promote inclusion not to be a clique. Volunteers cannot shoulder the main responsibility for getting PPI work done.
- Identify potential patient/user/carer/public representatives
There is no ideal or easy approach to recruitment. Evaluations show that a broad and balanced approach reflecting the community is needed, but this has huge implications for access and ability levels. Some schemes attract hundreds of potential members to events, but "hard to reach/under accessed groups" remain just that. There have to be intermediaries and proxies, as well as alternatives to "meetings" and use of non-health venues.
- Define initial training needs of user and lay representatives
Training has a key role in initiating and, more importantly, sustaining the engagement of lay people. Training should build perceptions of self-worth and identify existing transferable skills. Training as a recruitment incentive was used successfully by several pilot Patients' Forums. Accredited training and skills development can be used for career development and is appreciated as a valuable non-cash benefit. People like to see themselves succeeding at something.
- Define longer term development and support needs for user participants and support teams
Essential to prevent PPI initiative running out of steam once the initial enthusiasm wears off. Building capacity and sustaining interest is a continuous process. Individual service users may drift away or become unavailable for many different reasons. PPI structure has to be resilient enough to handle this. PPI staff can get in a rut. Lay reps and PPI Forum members experience increasing time demands with no compensating support. Burn out looms for both.
- Address perceived barriers around meetings, agendas and organisational processes and find alternative "ways in" for users
Working day meetings disadvantage participants who work, need to travel off peak, have carers' responsibilities, etc. Evening activities, telephone conferencing, email groups, "reading groups" to review papers in advance of meetings, advocates etc are all possible, but require significant resourcing and support. Cash reimbursement is needed for fares and out of pocket expenses. NHS paperwork imposes a penalty on participation.
- Create links with other agencies and find allies
Evaluations showed the importance of forging good personal and organisational relationships from the outset, despite lack of clarity about the future. Make allies early not late.
- Disseminate information and generate feedback about your activity
Most initiatives we've studied had not progressed much beyond meetings and newsletters, but they see websites and email as attractive means to communicate. Gap rapidly closing between those who have online access and those who don't. Lay people of all ages keen to acquire IT skills to use these tools. Those without such skills will be left out. Realistic evaluation is always needed. Find out if people who are participating would recommend it to others – the best benchmark measure that they think it is worthwhile.
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.