Select Committee on Health Written Evidence

79. Evidence submitted by London Ambulance Service Patients' Forum (PPI 78)


  The Patients' Forum for the LAS is a pan London forum which has operated successfully for three years with a membership of 15. It is highly successful as an advocate for communities across London and is leading the way on many public health issues. Abolition of the Forum is in our view highly destructive because it will destroy three years of creative work. Most importantly abolition will dismantle the establishment of successful relationships between the Forum and many community and voluntary organisations and between the Forum, the LAS, London's 32 PCTs, MPs, the Strategic Health Authority and many other organisations across London.

  The Forum believes that the relationships developed with all parts of the LAS have enabled us to operate effectively as an agent of influence on the quality of services provided to Londoners. It would take years for LINks to build a pan-London organisation with the level of expertise and influence which has been developed by the Forum—should LINks choose to do so.

  In our view closing a Forum with such highly successful and acclaimed record of PPI with the LAS is irrational.

2.   What is the purpose of patient and public involvement?

  The Forum believes that the primary purpose of PPI is to enable patients and the public to be able to influence local health policy and the delivery of services. We include commissioning within health policy. PPI offers a way for the public to find a way through the highly complex health bureaucracy which confronts the citizen when he or she tries to exercise influence in the NHS. There is a distinction between the role of citizen in suggesting change through PALS which sometimes works well, and the longer job of sitting with policy makers and planners to steer policy and planning towards the needs of a community. PPI provides a public voice for the community, which is especially important in organisations that undergo reorganisation so often.

  PPI is much more than "patient and public engagement", it should be about empowerment. The Government's commitment to revitalising community empowerment across the broad range of public services, cannot be realised by the powerless, ineffective bodies suggested by the creation of LINks. Indeed, it could be argued that the LINks proposals are more accurately a means of disempowerment, unlikely to achieve the aim of enabling citizens to become active partners in their healthcare and will not help create a system where people are no longer passive recipients or better equipped to make decisions about healthcare in their community.

3.   What form of patient and public involvement is desirable, practical and offers good value for money?

  There are many excellent examples of successful patient involvement and empowerment over the past 32 years of PPI in the NHS, where citizens and service users have genuinely influenced their local services.

  We would recommend local independent councils of elected citizen working closely with the voluntary and community sector and resourced sufficiently to be able them to have a well recognised public role and profile. Local high street office where members of the public and community groups can meet to discuss and plan developments in health policy, campaigning and where various forms of advocacy can be provided at an individual and community level.

  For mental health and ambulance services a hub and spoke model so that bodies can monitor large trusts and link in closely with local PPI organisations.

  Supported by small local expert teams with a centralised infrastructure for HR etc. This requires a recognised training scheme to ensure that team members are professionals in PPI and can support members effectively.

  Funding of the new system is a key issue. In the current system funding is denied to the front line where real PPI takes place. This Forum cannot even get money to fund a professionally produced annual report. Funding must be adequate for the task of genuine PPI, must be sufficient to find sufficient numbers of highly trained and professional staff to support members. Finances must be in the control of members.

4.   Why are existing systems for patient and public involvement being reformed after only 3 years?

  Because they lack sufficient powers to exercise local influence and are dependant on a weak and confused national bureaucracy, which has commissioned local FSOs which have often been incompetent.

  Destroying PPI infrastructure for a second time in three years will alienate those who are currently involved and is unlikely to attract many new enthusiasts for the powerless LINks bodies. The Department has alienated many people in the community through their systematic destruction of PPI and local communities are unlikely to want to play an active part in a new body that gives far fewer opportunities for PPI than the current PPI structures.

5.   How should LINks be designed, including:

  5.1  Remit and level of independence

  Although Ministers promote the idea of a new LINks organisation based on "independence, engagement, accountability and transparency", there is nothing in the proposals to show what would be different about LINks that would achieve this aspiration. Indeed it is suggested that the new arrangement are tied to and would be controlled to low volume service providers, whose record on accountability and transparency is sometimes less impressive than that of the NHS.

  Although the proposals suggest that a broad spectrum of people would be enabled to influence how their local services are designed and delivered, it is more likely that these proposal will create a conflict of interest that will severely damage PPI. This is because the organisations in the voluntary sector which are expected to be involved in running the new arrangements could well be in competition for service contracts with the NHS and will therefore have an "interest" in commissioning based on their own organisational objectives. The LINks proposal is consistent with the Government's objective of contracting out NHS services to the independent sector, rather than with increased democracy for the community. In the absence of real independence LINks would be unable to function effectively. Experience has repeatedly shown that community groups working in the health field without independence real powers get sucked into the social infrastructure of the NHS and lose the ability to function effectively.

  5.2  Membership and appointments

  Membership should be locally elected and not selected through an NHS appointments body. A strategy is required to ensure that over time all sections of the community are involved. Active support and training will be required to involve individuals and groups that have had no previous experience of working with health policy, monitoring and commissioning.

  5.3  Statutory powers

  Since 2003, statutory powers held on behalf of the community have substantially diluted, in fact the Patient's Forum legislation is devoid of any duty on NHS to consult Patients' Forums. The powers granted to Patients' Forum are also devoid of the most important power ever to be exercised by communities in relation to the NHS, ie the right challenge closures and changes of use NHS services. The absence of any statutory powers that give the community a "seat at the table" by right in discussions and negotiations about the future of local services has substantially weakened the capacity of communities through their Forums to exercise real influence in the NHS.

  With the abolition of Forums, communities, patients, users and carers will lose most of their remaining powers. The right to monitor the NHS will no longer rest with the Forum, but will be transferred to the NHS body as a duty to allow access to Forums in order to observe activities in the Trust. The power to inspect premises on behalf of the community will effectively be lost.

  Working with powerful PCTs, NHS Trusts and Foundation Trust requires more than a "grace and favour" relationship between LINks and the NHS body. To exercise real influence and to be taken seriously will require LINks to have the statutory power to monitor the NHS, to veto decisions which are not in the best interests of the local community, to influence commissioning decisions and to call on those accountable for decisions in the local NHS both in terms of services and commissioning to account for their actions.

  LINks also require statutory power to monitor non-NHS providers and commissioners of services (should commissioning funds pass to non-NHS groups or bodies) and to call them to account.

  Rather than developing health and social care services that are user-centred, responsive, open to challenge and accountable to communities, Ministers appear to be weakening the opportunity for PPI to have any real impact. Empowering citizens through LINks with appropriate statutory powers would also give them more confidence and more opportunities to influence the effectiveness of public health and preventative services.

  The issue of appropriate statutory powers is also of particular importance with respect to the plethora of private providers which are now operating under the NHS umbrella. These bodies have no duties or responsibilities to the public and often refuse to answer questions about the services they offer to patients. Strengthened statutory powers are needed to oblige these companies to operate in the same way as NHS bodies in respect of S11 of the Health and Social Act and other regulations in relation to PPI.

6.   Access to Information

  It appears that the right of LINks to access information in primary and acute NHS services is no greater than the general rights granted under the Freedom of Information Act.

  Access to information is a fundamental requirement for any organisation representing patients and the public in the NHS. Ministers must ensure that such information is available from every part of the NHS and in addition from private provider and not-for-profit providers of services to the NHS.

  The right of these companies to use "commercial confidentiality" to prevent the public having information about their services needs to be moderated by Regulation.

  Access to information from Ministers is another problem that needs to be resolved for LINks. In the current system questions to Health Ministers from Patient's Forums are rarely are answered by them and instead standard answers from a database are sent by very junior civil servants, who know very little about the NHS and often provide incompetent responses to issues raised by Forum.

7.   How should LINks relate to and avoid overlap with:

  7.1  Local Authority structures including Overview and Scrutiny Committees

  The power to refer matters to the OSCs replicates that of all previous statutory models of PPI. In LINks model however, voluntary sector providers would be able to promote their own services to OSCs with proposals for commissioning that benefited them, and might in some cases be used to harm the NHS as a competitor provider.

  The Forum supports the proposal for OSCs to have a role in making sure services are commissioned that reflect the health needs of local populations and that they are reflecting public priorities in the communities. However, as the public has virtually no say in what is commissioned in the NHS, because the NHS is provider driven, the emergence of new weak bodies (LINks) to represent the public's view and needs in commissioning, is likely to have no impact on high value commissioning decisions, eg the number of hip operation, cardiac bypass and mental health services. OSCs and LINks will need statutory powers to influence commissioning if the current balance of power is to change.

  7.2  Foundation Trust boards and Members Councils

  Membership of Foundations Trusts appears to have had very little influence on the Trusts. There should be a single powerful system of PPI for every NHS body.

  7.3  Formal and informal complaints procedures

  Access to ICAS services in the community is extremely poor. They have no public profile and little capacity. The development of LINks provides Ministers with an opportunity to enhance their capacity and community links by relocating the independent complaints advocacy service with local LINks. This was the intention with Patients' Forums but was never realised. This move would be especially valuable in light of new complaints legislation.

8.   In what circumstances should wider public consultation (including under Section 11 of the Health and Social Care Act 2001) be carried out and what form should this take?

  Section 11 of the Health and Social Care could be made stronger by requiring PCTs to develop commissioning plans in relation to local need and in partnership with OSCs and LINks. Requiring PCTs merely to respond to OSCs and LINks will not empower the community.

  Section 11 is potentially a useful and effective power. However, enforcement for the community is very difficult, because NHS bodies and their suppliers that fail to respond to demands for consultation, can do so without fear of criticism from the DH. The Healthcare Commission should act as an agency of enforcement but fails to do so. A revised Section 11 should ensure that enforcement is available to the community eg through the HCC and the OSC.

  In Conclusion:

    —  The Minister has not shown how the current systems for involving and engaging with patients and citizens will be strengthened and improved by LINks.

    —  The new system must be properly funded and funding in the hands of front line members, ie patient and the public.

    —  Citizens, patients, users and carers should not stripped of all of the statutory powers that they have been able to exercise since 1974.

    —  Debates with commissioners and providers will not in themselves influence decisions about their health and social care services. LINks would need statutory powers to do this successfully.

    —  The LINks proposals do not make NHS organisations more accountable to their local populations for the services they provide and commission. The only require them to listen and respond.

    —  The proposals will not hold NHS trusts and PCTs more accountable to their local populations.

    —  The commitment to building capacity in voluntary and community organisations will provide support to the voluntary sector as providers, but will not enhance democracy, empowerment or public involvement.

    —  Gathering information from a wide range of people and a wide range of sources about what local people need in terms of both their health and social care will not influence providers and commissioners of services, unless LINks and OSC have powers to require NHS bodies to meet local needs.

Malcolm Alexander

Chair, London Ambulance Service Patients Forum

January 2007

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