Tuesday, 23 September 2003
User Involvement - what's in a word?
Rhetoric about involving NHS users increasingly reminds me of Alice’s Through the Looking Glass encounter with Humpty Dumpty:
"When I use a word," Humpty Dumpty said in rather a scornful tone, "it means just what I choose it to mean -- neither more nor less."
"The question is," said Alice, "whether you can make words mean so many different things."
Section 11 of the Health and Social Care Act 2001, effective from January 2003, is unambiguous: NHS Trusts, PCTs, Strategic Health Authorities and Ambulance Trusts must make arrangements so that ‘persons to whom….services are being or may be provided are, directly or through representatives, involved in and consulted on’ all aspects of service planning and operation. Translating the guidance into local action is the hard part.1
Working through user representatives requires more than willingness and warm words. NHS bodies and personnel need good examples, dedicated resources and sufficient time to learn how to work in this unfamiliar way. We cannot wait until 571 Patient and Public Involvement Forums are set up in England. Forums are unlikely to be fully functional before 2005, assuming they survive the spread of Foundation Trusts. New and existing user representatives, groups and networks should be supported now across the NHS. This means adopting a matrix approach, ideally with local government partners as health and social care converge, and joint investment in a realistic community development strategy.2
Patient and public involvement in health and social care is only a process. The real destination is shared power in decision-making and genuine user-provider partnerships. “Nothing about us without us” sums it up. If Patient and Public Involvement doesn’t lead there, then it’s just tick-box management. There are no quick fixes. A national study of Pilot Patients’ Forums found no ideal or easy approach to recruiting lay representatives but did identify local successes using skills training as an incentive to engagement. 3
Primary Care Trust user involvement strategies which assume consensus may founder unless barriers are identified and overcome 4. These include:
- No understanding of the purpose of involvement
- Difficulty communicating with the practice population
- Difficulty of identifying representative patients
- Concerns about raising expectations
- Lack of skills on the part of professionals of members of the public
- Poor attitudes on the part of either side
- Conflicting user and health professional agendas
- Professional or organisational territorialism
- Lack of resources (time and money) or support
- Anxiety about the cost of involving users
My local experience suggests that user participation groups in primary care practices offer learning opportunities about mutual trust, responsibility and partnership which can help avoid such barriers and will stick when applied on the wider PCT canvas. The benefits should be obvious but are often overlooked. Supporting practice-based participation could open new channels for PCT compliance with consultation and involvement duties. The lasting dividend would be a foundation for more complex user involvement structures. Primary Care Trusts neglect such “bottom up” building blocks at their peril. Remember the fate that befell Humpty Dumpty.
Lay Member, Professional Executive Committee
Wandsworth Primary Care Trust
1 - Strengthening Accountability: involving patients and the public
Department of Health (February 2003) www.doh.gov.uk/involvingpatients/strengthaccountguid.pdf
2 - A Practical Guide for Involving the Public in Health and Social Services
Leicester City Health Action Zone (July 2003) www.doh.gov.uk/cno/hazdoc.pdf
3 - Building Capacity for Pilot Patients’ Forums: the experience of recruiter and recruited
Moore Adamson Craig Partnership (November 2002) www.mooreadamsoncraig.co.uk
4 - Scottish Consumer Council Putting Partnership into Practice: Involving the Public in Primary Care. Glasgow, 1999.