Shaw Trust is a Not for Profit Organisation that currently supports 49 Patient and Public Involvement Forums in North East Lincolnshire, North Lincolnshire, Lincolnshire, Norfolk, Suffolk, North East London, Mid London and South East London.

  1.  The purpose of Patient and Public Involvement (PPI) is two-way: it is to independently inform Health and Social Care authorities of needs for and public perceptions of health services, and to help communicate to both patients and the public the decisions made in Health & Social Care and the reasons for them.

  2.  This will include stimulating community action and helping instigate changes in service provision and planning; seeking and using the community views and contributions; engaging people in all levels of decision making; and identifying opportunities for community development.

  3.  What form of PPI is desirable, practical and offers good value for money? The notion of "sustainability" is essential to PPI. Most people are wary of government initiatives, which fluctuate, and individuals must be encouraged to understand that their personal participation is essential. The public & Patients must be allowed to define "success" and what it means to their community. In addition what must be recognised is consultation overload, ensuring that it reaches all groups/diversities.

  4.  Due recognition should be given to the volunteers who work tirelessly to make the NHS relevant to the community it serves and the expertise of those who have acquired many years experience must be incorporated.

  5.  As we live in a multi-cultural society we have diverse lifestyles and beliefs. Our communities are geographical groupings, but they are also communities of interest and we belong to more than one. All PPI must include local people/organisations including socially excluded groups but these need to feed into a national voice on larger issues.

  6.  There must be the creation of effective partnerships between all the agencies. In other words it means the involvement of statutory, voluntary agencies, local communities and individuals in the business of health care in our communities. The involvement should be co-evolving and sustainable.

  7.  The question as to why are existing systems for PPI being reformed after only three years is for the Ministers to answer as any response can only be second-guessing. From feedback we have accumulated the views are that the Commission for Patient and Public Involvement in Health (CPPIH) has been inconsistent, with its approach varying from region to region. During their contracting and tendering process with Forum Support Organisations (FSO) there have been questionable approaches, and appointments with inconsistencies within FSO contracts. The Forums views have been that the approach CPPIH took lacked credibility. In addition, many Forums were hampered in the beginning by poor support and are only finding their feet now, as they are about to be disbanded. The feedback also suggests the Forums perceived a lack of respect for their contributions without giving them time to get established.

  8.  There is a lack of knowledge nationally on what Forums do and what their role is. There are barriers within the NHS to PPI and a culture of tick-box standards.

  9.  In some areas Forums are not seen as engaging with their community but merely addressing personal issues.

  10.  How should Local Involvement Networks (LINks) be designed ? LINks should be seen as independent of the NHS and local government providing a pathway for true consultation and participation. By being independent the culture within Health & Social Care would need to change to recognise patients as clients and to give credence to the clients viewpoints

  11.  LINks should be widely promoted to give them credibility and status and thereby encourage participation. LINks should capitalise on good practice from the Forum experience.

  12.  Serious thought is required in regard to Mental Health, Ambulance Services and National Institutions, all of which span multiple Boroughs and therefore will not be served by the LINks system as currently outlined.

  13.  Membership & Appointments. LINks needs to encompass all people and groups as all views are essential. Every effort should be put in place not to create barriers to inclusion. All diversities need to be addressed, along with the recognition that there are many ways to involve people all of which do not necessarily include an application process. PPI has been around through Community Health Councils and Patients Forums with volunteers having gained huge experience and expertise which would be essential to a future participation.

  14.  Statutory powers. As an FSO and through Forum feedback we feel there is valuable merit in regard to patient experience in continuing the rights of inspection and monitoring and it gives people tangible involvement rather than purely a strategic input. Volunteers need to be valued and need to achieve targets. Do not make LINks so strategic that people are scared to become involved due to perceived lack of understanding

  15.  Inspection and monitoring also contributes to helping Patients Forums feedback in the Healthcare Commission Annual Health Check.

  16.  Equally important is the right to a response. LINks should be able to ask a question of a Trust or Strategic Health Authority and expect a response as the NHS is publicly accountable. In addition to the right to response is the right of referral to pass on findings for further investigation.

  17.  Funding & Support. Finance while it has been stated that monies (amount unknown) will be made available to Local Authorities to procure support services (Host) to LINks, it is seen as a shattering[MSOffice2] arrangement removing the possibility of consistency, and of a regional / national picture with 152 different ways of delivering, duplication of service and a fractured approach. PPI must finally be taken seriously and funded accordingly.

  18.  Any Host organisation must be financed fairly. A major complaint has been that FSOs were not paid the same by CPPIH to deliver the same service resulting in widely differing standards of support.

  19.  Performance management of the Host must be taken into consideration as to by whom and how this would happen. Are we likely to see 152 different standards nationally dependant on who has the task in the Local Authority? This is currently the experience with Trusts and PPI as the level of expertise is dependent upon the grade of the position.

  20.  Relations with local Health Trusts. With Forums this can only be described as variable dependant on the Lead for PPI, the attitude of the Trust Board or Forum personalities. For there to be effective involvement, there must be a partnership, with a clear understanding of the purpose and role of a LINk and it not being seen as an interference. The culture within the NHS must change to appreciate what PPI can offer and not treat it as a tick-box exercise. Client feedback is essential to any successful operation.

  21.  National Co-ordination. Whilst it could be perceived that CPPIH failed at this role it does not mean this model does not work. There are several facts that need to be taken into consideration including governance—appointment; membership; guidelines; code of conduct; complaints and performance management. The ability to feedback on national and regional issues; The need to have a centrally controlled IT system.

  22.  Local Authority and Overview and Scrutiny Committees (OSC). Firstly not every Local Authority has a specific health OSC. It could be seen that the OSC is a political body and not necessarily representative due their own political agenda. There could be difficulties to maintain continuity of work due to elections. As OSCs do not have the right of inspection there is a clear role for partnership. However, there is potential for conflict of interest where focus groups are funded by local contracts which could nullify the all-important independence.

  23.  Healthcare Commission. To date Patient Forums have formally been involved in the Annual Health Check. This has been seen as valuable to the Healthcare Commission, which could indicate that LINks could equally contribute as Lay Assessors in the inspection process.

Kirstine Regan

Shaw Trust

10 January 2007