Wandsworth PPI Summit
2 July 2003
“WANDSWORTH PATIENT AND PUBLIC INVOLVEMENT SUMMIT”:
BACKGROUND REVIEW AND FUTURE OPTIONS FOR THE
WANDSWORTH PILOT PATIENTS’ FORUM
11.30 - 15.00: SMALL HALL, TOOTING LEISURE CENTRE
2 JULY 2003
PREPARED FOR WANDSWORTH CHC BY MAC ASSOCIATES
Andrew Craig
Valerie Moore
Colin Adamson
TABLE OF CONTENTS / PAGESection 1: Aim and rationale for “Wandsworth Patient and Public Involvement Summit” / 3
Section 2: Methodology and context for this review / 4
Section 3: Patient and Public Involvement in Health - National and Wandsworth overview / 5-11
Section 4: Profiling Wandsworth Pilot Patients’ Forum
- Genesis and initial work
- Identifying and developing lay people
- Current work and benefits to NHS and other stakeholders
Section 5: Resource issues about user participation / 19
Section 6: Future options and risks: analysis and appraisal
- Options 1- 8
Section 7: Taking the next steps: before and after CHC abolition / 28
APPENDICES
App 1: MAC Associates / 29
App 2: UK online PPI resources / 30-31
App 3: Stronger Voice in Health in Wandsworth Pilot - learning points for local health economy / 32-35
App 4: Wandsworth PCT Consultation Document - aspirations and commitments about public involvement / 36-38
App 5: “Pathway to a Wandsworth Pilot Patients Forum” training programme evaluation / 39-41
App 6: Model curriculum for WPPF training / 42-45
App 7: Lay people serving on WPCT committees and groups / 46
App 8: “Experience Exchange” learning about Pilot Patients Forums / 47-49
App 9: Transition Advisory Board recommendations / 45-46
App 10: “Recruiter and Recruited” learning about Pilot Patients Forums / 50-51
App 11: Draft criteria and role of an intermediary host body for WPPF members / 56
App 12: “Making their mark” - pictures of WPPF members in action at Epsom Orthopaedic Centre / 57-59
SECTION 1: AIM AND RATIONALE FOR “WANDSWORTH PATIENT AND PUBLIC INVOLVEMENT (PPI) SUMMIT”
In the light of the Government’s timetable for the abolition of Community Health Councils (CHCs) announced in January 2003 for implementation on 1 September 2003 (extended to 1 December by Ministers on 4th June), the aim of the “Wandsworth PPI Summit” is to discuss how key statutory and voluntary sector stakeholders in health and social services covering the Wandsworth PCT and the London Borough of Wandsworth areas can work together in patient and public involvement (PPI) to
- minimise the disruption to ongoing PPI work in Wandsworth from disjunctions and slippages which are likely to occur in implementing PPI structures at national and local levels
- retain and maximse the involvement of those lay people currently engaged in work within the local health economy
and in particular to
- agree how interim arrangements can be put in place to fill any gap between CHC abolition and the operational establishment of statutory Patient and Public Involvement Forums in all Wandsworth NHS bodies
SECTION 2: METHODOLOGY AND CONTEXT FOR THIS REVIEW
Wandsworth Community Health Council (CHC) invited tenders for the purpose of assisting the CHC in devising, supporting and evaluating the “Wandsworth PPI Summit” activity. MAC Associates’ (App 1) tender was successful. As part of their work, MAC’s consultants were asked to prepare this study focusing on the recent history, current activities and future options for the continuation of the work of the Wandsworth Pilot Patients’ Forum (WPPF) following the abolition of the Community Health Council.
The study identifies eight options for discussion at the Summit meeting. MAC Associates is grateful for the assistance received throughout this project and specifically in compiling this review from David Ross, Chief Officer of Wandsworth Community Health Council.
The purpose of this review is to help invited participants prepare for the “Wandsworth PPI Summit” event and to assist them to engage effectively with each other in it. It must be stressed that the information it contains is believed to be correct at the time of its preparation, namely early June 2003. Any significant developments at national and local level between that time and the convening of the Summit on 2nd July will be subject of a verbal update at the event.
The review should be read in the national context of the increasingly rich and diverse examples of UK guidance and good practice about involving users, carers and the public in health services (App 2). The local context for the discussion on 2nd July is the unavoidable creation, due to delays in the national PPI timetable, of a high-risk period of indeterminate length for local PPI activities. This period will legally begin from the date of CHC abolition, but effectively sometime before that as CHC staff depart and services are closed down. The risk period will not end until the effective functional establishment of statutory patient and public involvement structures for Wandsworth at some point yet to be determined.
The options in this paper consider ways forward once the WPPF’s link with the CHC ends. At that time WPPF will become, for all practical purposes, a new voluntary body in Wandsworth.
SECTION 3: PATIENT AND PUBLIC INVOLVEMENT IN HEALTH - NATIONAL AND WANDSWORTH OVERVIEW
This picture is based on information provided by the Department of Health and the Commission for Patient and Public Involvement in Health (CPPIH) up to 4 June 2003 and is subject to change.
Health Minister David Lammy restated the government’s vision for patient and public involvement in a statement to the House of Commons on 4th June 2003:
At 1 September the programme of work to set up patients’ forums will be well underway and the support for them will be in place to provide a one-stop shop for information and advice; the Commission for Patient and Public Involvement in Health (CPPIH) will be representing the patients voice nationally; local authority overview and scrutiny committees will be scrutinising the NHS; the NHS itself will be carrying out its new duty to involve and consult the public; there will be independent support for complainants; there will be support for patients from PALS (Patient Advice and Liaison Service) in almost all trusts; there will be a national help line set up by CPPIH that will provide advice, information and sign-posting for the public about where to get advice and support ; and there will be monitoring of the NHS by the Commission for Health Improvement and by Patient Environment Action Teams.
In effect, Wandsworth health and local government bodies are already operating in pilot form all aspects of the proposed new patient and public involvement system.
Statutory background
The new arrangements for public and patient involvement (PPI) in the NHS are covered by two pieces of recent legislation:
- The Health and Social Care Act 2001
- The NHS Reform and Health Care Professions Act 2002
The Government announced on 31 January 2003 its intention to abolish Community Health Councils from 1 September 2003. CHC staff were set to be issued with formal notices of redundancy at the end of May 2003. This did not happen and instead Ministers have announced an extension to the abolition timetable to 1st December. This is unlikely to affect the rate at which CHC staff will be leaving as they find alternative jobs. CHC members will remain in office until the date of abolition. CHCs’ statutory responsibilities will continue unchanged until then.
Duty on NHS bodies to consult and involve the public
(s. 11 of 2001 Act)
This duty came into effect on 1 January 2003 in England. The Department of Health issued policy guidance and copious examples of good practice in February 2003.
- Guidance for NHS organisations is at
- Good practice examples of involving users, patients and carers is at
Section 11 requires that each NHS trust, Primary Care Trust (PCT), Strategic Health Authority (SHA) and Ambulance Trust 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. The ‘through representatives’ provision is essential, as it is not possible to consult and involve all users about everything. Working through user representatives requires more than just willingness. NHS bodies need both guidance and time to put good ideas into practice in order to learn from the experience. A positive way forward is for PCTs and NHS Trusts to adopt an iterative approach which embraces and encourages new and diverse user representatives and groups. WPPF and its networks exemplify this approach.
Local Authority Health Overview and Scrutiny Committees (Health OSCs)
(s. 7 of 2001 Act)
Regulations for OSCs were issued on 20th May (App 2). They set out the legal powers for local authority overview and scrutiny committees; the duties on the NHS to support those powers; and offer good practice guidance on undertaking the scrutiny process in the context of health and health services.
There is also a guidance note on undertaking scrutiny of substantial changes to health services prior to the abolition of Community Health Councils.
From 1 January 2003, local authorities which provide or commission social services have the power to scrutinise all health services, including the NHS. (NB this is a power, not a duty.) Local authority OSCs must be consulted about proposed major changes to health services and will be able to refer contested changes to the Secretary of State for Health - as will CHCs until they are abolished. OSCs will have no power to make decisions or to require that others act upon their suggestions. Decisions are awaited on any extra funding for local authorities that set up such health scrutiny arrangements.
Wandsworth Council has set up a Health OSC. In addition to scrutinising the work of the Wandsworth PCT, with which it is co-terminus, it may agree with neighbouring local authorities that Wandsworth will take the lead on scrutiny of St George's NHS Trust and SW London & St George’s Mental Health Trust, the latter covering five London boroughs. In some other London Boroughs, pilot OSCs have already begun forming partnerships with Pilot Patients’ Forums to help Councils draw up local scrutiny plans.
Patient Advice and Liaison Services (PALS)
Each NHS Trust and PCT was expected to have a PALS in place from 1 April 2002 to resolve problems on the spot and give people information about local health services, support groups, complaints procedures and advocacy services. PALS should also monitor trends and highlight gaps in services. This information will be included in the annual patients’ prospectus for the Trust/PCT.
In Wandsworth, the St George’s Healthcare NHS Trust has a PALS service created with the assistance of Wandsworth CHC seconded staff. The Wandsworth PCT has recently appointed a PALS worker on a temporary basis while external consultants evaluate the feasibility of a permanent PALS service. It is believed that the South West London and St George’s Mental Health NHS Trust, which covers five London boroughs, has yet to establish a PALS service. Funding issues have constrained PALS developments locally.
Commission for Patient and Public Involvement in Health (CPPIH)
This national body for England was established on 1 January 2003, chaired by Mrs Sharon Grant. It is responsible for establishing, funding, staffing and managing both Patient and Public Involvement Forums and, through PCT PPI Forums, Independent Complaints Advocacy Services (ICAS). The Commission will set standards for, and monitor, the performance of PPI Forums and ICAS providers.
The Commission has a budget of around £35m for 2003-04. This will be used to fund:
- The Commission’s supporting central structure (based in Birmingham).
- Nine regional centres, providing support to, and performance management of, the delivery of PPI Forums.
- Contracts with Local Network Providers, drawn from local voluntary and community organisations, each of which will “be responsible for supporting patient and public involvement within the local community by providing locally based administrative and infrastructure support” to at least two PPI Forums. The deadline for prospective LNPs to submit tenders was 23 May 2003. Contracts will be awarded during the late summer with a view to recruitment of lay people to serve on PPIFs starting in the autumn.
- Some 571 PPI Forums, established by the Local Network Providers, comprising “volunteers recruited locally, trained and supported in their task of facilitating patient and public involvement within the local community”.
Sharon Grant has stated that the aim of the CPPIH is “… to empower the public to influence health -related decisions wherever they are made --and that’s not just the NHS.” CPPIH will work to see patient and public involvement structures “effectively joined up with local government, local strategic partnerships, the voluntary sector and community involvement structures.” (HSJ 22 May 2003)
In Wandsworth a tender has been submitted by one or more local organisations to form a “Local Network Provider”. If this is successful, then the CPPIH has indicated that the LNP will proceed to establish five PPIFs across the old Merton, Sutton and Wandsworth area for the Wandsworth and Sutton and Merton PCTs, St George’s Health Care NHS Trust, Epsom and St Helier NHS Trust, and the South West London and St George’s Mental Health NHS Trust. On 4th June, the Department of Health stated that “the Commission is bringing forward its final date for complete Forum coverage also to 1st December.” Setting up PPIFs for five NHS bodies by the beginning of December presents a very challenging timetable.
Patient and Public Involvement Forums (s. 15-19 of 2001 Act)
Regulations on establishment, membership and function of what the statute calls “Patients’ Forums” were issued on 21 May and consultation closes 16 July 2003. In practice they will be termed Patient and Public Involvement Forums (PPIFs). The formal commencement date will be 1st September 2003 even though PPIFs will not exist in terms of staff or members until some months after that. It is widely believed that a more realistic operational date is April 2004.
The statute provides that each Primary Care Trust and NHS Trust should have a PPI Forum. PCT Forums will have a wider “lead role” (see below). All Forums will be independent – funded, staffed and monitored through CPPIH, rather than the Trust to which each Forum relates.
The Forums will have a wide range of powers, including the right to inspect all NHS premises in their area and monitor the performance of local PALS services, including taking them over where there is consistent underperformance. PCT Forums will have an additional remit to monitor primary care and PCT commissioning. Government statements have included the right to elect one of their members to be represented on the Trust Board at Non-Executive Director level, but the position on this is currently not clear and further guidance is awaited.
CPPIH expects each Forum to have between 15 and 20 core members (the draft Regulations speak of a “at least 7 members”), but it is “looking for a fluid membership to reflect the make up of local communities and allow the forums to respond to new initiatives”. Forum members will be appointed by CPPIH in accordance with NHS Appointments Commission procedures.
Considerable numbers of lay people will be needed as members of the PPIFs. Reflecting the draft Regulations and the CPPIH’s statements, the situation in England and locally could be as follows. There will be some necessary overlap, ie between Trust and lead PCT Forums, but the following should be seen as minimum numbers needed to maintain core membership. The challenges inherent in identifying, training, supporting and facilitating these numbers of lay people at local, much less national level, should not be underestimated.
England / 571 PPIFs / 7 each = 3997 / 15 each = 8565 / 20 each = 11,420MSW Area / 5 PPIFs / 7 each = 35 / 15 each = 75 / 20 each = 100
Wandsworth Area / 3 PPIFs / 7 each = 21 / 15 each = 45 / 20 each = 60
In Wandsworth theCHC established a Wandsworth Pilot Patients’ Forum (WPPF), which began work in April 2002 to coincide with the establishment of the Primary Care Trust. It website is (
The Forum is part-funded and recognised by the Department of Health as one of the national pilot sites, with the remainder of funding coming from the CHC. WPPF has a part-time community development worker and has already attracted a network of more than 50 people, the majority of whom have undertaken a two-day introductory training course. Only six people of the current network are or have been CHC members, the rest are completely or relatively new to representational roles. The WPPF recruitment programme was evaluated as part of the national pilot patients’ forums study in late 2002 (see below).
In governance terms, the WPPF was established as a sub-committee of the CHC as there was no other means to establish and fund it. This arrangement is common to most of the other pilot sites and has the blessing of the Department of Health. This arrangement means, however, that the Forum will formally cease to exist when the CHC is abolished and that a period of instability will exist for some time before that. The CHC is anxious that the momentum that has already been built up should not be lost and it is currently considering how best this could be achieved.