Select Committee on Health Written Evidence

84. Evidence submitted by Richmond and Twickenham PCT PPI Forum (PPI 140)

  The Richmond and Twickenham PCT PPIF is a small but increasingly active forum. There are no acute hospitals within the PCT and local authority boundaries; residents therefore need to travel outside the borough for delivery of acute medical and surgical care services.

  Forum members have questioned why systems for patient and public involvement are being reformed after only three years; informed by experience, forum members recognise that it takes time for people drawn from a variety of backgrounds and experience to learn to work together and choose and take forward a work programme, particularly when seeking information and making judgements in relation to such a complex area as the delivery of health care. However, Forum members now look forward positively to being involved in the establishment of a local LINk and are committed to progressing the agenda for public and user involvement in the planning, commissioning and provision of local care services.

  Our submission of evidence to the Health Committee, takes account of the recommendations set out in the Department of Health's document: A stronger local voice, July 2006 and the Government response published in December 2006. We also note the first reading on 13 December 2006 of the Local Government and Public Involvement in Health Bill and the contents of Part 11, Patient and Public Involvement in Health and Social Care. We trust that the findings and recommendations of the Health Committee Inquiry into Public and Patient Involvement in the NHS will be taken due account of as the Local Government and Public Involvement in Health Bill progresses through Parliament, particularly in advance of the Report stage.

  We respond to the following points, which relate to the terms of reference for the Inquiry:

1.  How Should LINks be Designed:

1.1  Remit and level of independence

  We support the recommendation that LINks:

    —  should be coterminous with each local authority with social service responsibilities;

    —  should be independent and have the powers to develop their own priorities and agenda;

    —  will have statutory powers enabling them to require NHS and social care bodies to provide information about their services and priorities and to respond to recommendations; and

    —  will provide a flexible way for local people and communities to engage with health and social care organisations and ensure that service providers are made more accountable to the public.

  We strongly support the plan for LINks to have responsibility for monitoring both health and social care provision over the whole patient journey.

  The importance of being able to work closely with the Health Overview and Scrutiny committee is recognised but at the same time, independence must be ensured.

Key points:

  —  LINk Independence.

  —  A structure allowing monitoring of the whole patient journey.

1.2  Membership and appointments

  The arrangements for organising the recruitment and signing up of members to the LINks should be handled at local level, by the host organisation. There are existing models readily available within the charitable and voluntary sector for recruiting to organisations whose members are both organisations and individuals.

  There will need to be a "management board" or similar structure for the LINks and although this board will be accepting nominations from member organisations and individuals in due course, it will be advantageous if individual members of the existing local PPIFs, if willing, are automatically selected as members of the management board in the first year. They have already been through a valid recruitment process, including CRB checks and have demonstrated their sustained commitment to the public and user involvement agenda.

  We recognise that it is intended there will be flexibility for LINks to organise their own structures but when LINks begin operation it will be vital that there are members with experience in place, to move the process forward and facilitate LINk independence and development. PPI forums took considerable time to develop cohesion and direction; many signed up members were lost at an early stage due to disillusionment with the forums' capabilities to function effectively and it would be very regrettable if the experience gained through PPI forum membership was not to be fully utilised within the new LINks. It is important that host organisations do not lead but support, hence the importance of the LINks being able to operate as independent organisations right from the start.

Key points:

  —  Recruitment for LINks to be handled at local level.

  —  PPIF members to be amongst the founding members of the new LINks in order to benefit from their public and user involvement experience and commitment.

1.3  Funding and support

  LINks are to be required to take on a significant and extensive role. In order to be effective each LINk will need significant administrative and training support, with more intensive support on start-up. If LINks are not sufficiently resourced they will be overwhelmed and fail. In the early days of the introduction of forums, members felt generally unsupported, particularly in relation to the provision of practical support at local level and funding support for front-line activity. This was a major disincentive to early member commitment.

  The funding to be provided to local authorities to develop LINks should be clearly defined and monitored.

  It is not enough to say there are representative voluntary and community organisations (VCS) already in place that will be able to provide information and user experience to feed into the LINks, these organisations are hard-pressed already. VCS organisations frequently find it difficult to engage with and respond to public consultations, participate in project working groups or attend special interest meetings etc as much as they would wish. It is not that they do not want to engage fully, they just don't have sufficient spare capacity.

  The host organisation must be based within the locality covered by the LINk. A very significant weakness of the PPIF structure has been that forums are not supported by an organisation based within their locality. It is essential that the host organisation is easily accessible and has wide knowledge and experience of the local voluntary and community sector (VCS). This will facilitate the development of the LINk as an integral part of the VCS sector, with rapid development of appropriate membership and involvement. Whilst recognising the constraints on funding, some members feel very strongly that the LINks will require high profile, accessible "shop-front" premises in order to engage with and attract local interest and involvement.

Key points:

  —  The funding for LINks provided through local authorities should be clearly defined and monitored.

  —  The host organisation must have a knowledge of the local health and social care sector and be based in the local community.

  —  It is essential that LINks are provided with dedicated accommodation and administrative support, appropriate and sufficient to enable the objectives and remit of LINks to be achieved.

1.4  Areas of focus

  As the LINks are to be set up as independent organisations with the ability to set their own agendas within the scope of LINks' statutory functions, it is likely that the "areas of focus" will vary widely between LINks organisations and will be influenced by local priorities and the strength of the involvement of various groups and individuals. This freedom to set their own agendas is vital and from experience gained within the voluntary and community sector (VCS), it is clear that the enthusiasm and commitment of VCS members is enhanced if there is freedom of choice of focus, recognising the key role that it is proposed that LINks will have in contributing to the commissioning and planning of services, in addition to provision.

Key point:

  —  The freedom for LINks to set their own agendas is essential, dependent on local priorities and interests.

1.5  Statutory powers

  We note that the current legislation on health service consultation Section 11 of the Health and Social Care Act is to be simplified and strengthened in the new legislation. It has been recorded in the press and elsewhere that on a number of occasions consultation processes have not been initiated appropriately by healthcare organisations. The provision of health and social care is currently moving through a period of very significant change and it is essential that the message is clear that consultation processes are not a matter of choice for health and social care organisations but a clear statutory requirement. [We note the Local Government and Public Involvement in Health Bill, Part 11 Clause 163, Duty to consult users of Health services.].

  More recently in the government's response to A stronger local voice (1.41) the government has responded to PPIF's concerns that the power to enter health care premises was not to be provided for LINks. We note the statement: "We therefore plan to provide LINks with the power to enter health and social care premises (with some exceptions) and to observe and assess the nature and quality of services.".

  Patient and Public Involvement Forums have been extremely concerned that this power was not to be continued within LINks. It has probably been the most effective power that the PPI forums have been able to use when observing and assessing the nature and quality of specific services. It is vital that LINks are provided with this power. [We note Local Government and Public Involvement in Health Bill, Part 11, Clause 156 Service-providers duties to allow entry by local involvement networks.].

Key points:

  —  We support the strengthening of the consultation process.

  —  We applaud the decision to provide LINks with the power to enter health and social care premises to observe and assess services.

1.6  Relations with local health trusts

  Within the current patient and public involvement system the PPIF's engagement with their local healthcare trusts is variable. With many trusts the relationship is constructive and becoming more so over time. An increased emphasis on user and public involvement within the criteria used for measuring and benchmarking a trust's annual performance will advance this process, facilitated by the healthcare organisations being required to address specific standards in relation to engagement.

  It is obvious from PPIFs' experience that user and public involvement needs time to become established within each local community. Individuals are often actively involved in a voluntary or community organisation that serves their own or their family's particular interests and needs. The individual knowledge that they gain is extremely valuable, as it is based on practical experience, but to draw all these experiences together to contribute to the wider debate and decision-making process concerning the delivery of local services is complex. It will require the commitment of health and social care providers and commissioners as well as the LINks and other public and user representative bodies.

Key point:

  —  The success of the public and user involvement agenda will require the commitment of health and social care providers in addition to that of LINks and other public and user representative bodies.

1.7  National coordination

  Whilst recognising that a representative national organisation with regional representation will be necessary to form the hub and spokes of a national network, we believe that the focus should be on the activity of LINks at the local level. LINks should be encouraged to communicate freely with each other, benefiting from practical networking and the sharing of experience. We recommend that the engagement at national level should follow the model proposed for LINks, ie that the network model should provide for inclusiveness and not develop into an exclusive membership of a limited number of LINks or individuals, who then become the "voice" of all LINks. Membership of the national representative group should be through election and with limited terms of office to allow for a changing cohort of members drawn from as wide a spectrum as possible.

  During the period of development of PPIFs up to and including the present, the issue of which PPIF members are presumed to represent the wider membership has been a matter of continuing concern. The process for nomination and election of representative members should be effectively supported and acknowledge that potential nominees will require appropriate information on the role and responsibilities, encouragement to participate and support through training.

Key point:

  —  A LINks representative body at national level will be required but the focus of attention should be on the activity of LINks at local level.

2.  How Should LINks Relate to Avoid Overlap With:

2.1  Local Authority structures including Overview and Scrutiny Committees

  We believe that LINks must ensure their independence. However, working constructively with health overview and scrutiny committees (OSCs) will be essential in order to maximise capacity and ensure that HOSCs are informed by as wide a range of users and the public as possible; the two structures should be complementary to each other. Our PPIF has developed a constructive relationship with the local authority's HOSC. Two PPIF members are currently co-opted as members of the HOSC, one as official representative of the PPIF and the other co-opted for their broad experience relating to health and social care. However, we are aware that there are still PPIFs that have minimal contact or dialogue with their local HOSC.

Key point:

  —  Working constructively with health overview and scrutiny committees will be essential in order to maximise capacity and ensure effective exchange of information.

2.2  Foundation Trust boards and Members Councils

  As the role of LINks is to be structured around the care pathway it will be essential that LINks connect with local foundation trusts, as with any other healthcare organisation. It is expected that members of the foundation trust, who represent the local community interest, will be encouraged to become LINk members. It will be up to the local LINk to decide how to connect most effectively with health and social care providers and to recognise the diversity of organisational structures. This understanding of the complex health and social care environment will need to be developed with the support of appropriate training.

Key point:

  —  As the role of LINks is to be structured around care pathways, LINks will need to connect with Foundation trusts as with any other health or social care provider.

2.3  Inspectorates including the Healthcare Commission

  It is to be expected that inspectorates will promote best practice in relation to user and public involvement by making full use of LINks by involving them in assessment processes. All bodies involved in monitoring the delivery of health and social care should maximise opportunities for engaging service users and the public and co-ordinating their inspection activities. It is recognised that with the development of regulation and inspection bodies over the past few years, there has been an excessive amount of duplication, which in itself causes disruption to the organisations being monitored, reviewed or inspected.

Key point:

  —  It is to be expected that inspectorates will promote best practice in relation to user and public involvement by making full use of LINks by involving them in assessment processes.

Formal and informal complaints procedures

  Users often find the NHS complaints procedure convoluted, extended and not infrequently come out at the end of the process still dissatisfied. The system has been the subject of research and reform on a number of occasions over the years, the latest addition to the process being the NHS Redress Bill published in November 2006.

  The successful introduction of the Patient Advice and Liaison Service (PALS) into NHS trusts providing informal access to users with concerns about healthcare is recognised and the PALS department within our PCT has been a very useful first-line contact for raising issues of concern to the PPIF. Due to their success the PALS departments of trusts are now becoming somewhat overstretched but it is envisaged that LINks will find it appropriate and productive to build an effective dialogue with local PALS departments. It is not considered appropriate that LINks should get involved with individual complaints, either the informal concerns voiced through PALS or the formal written complaints taken forward through the NHS complaints procedure. However, it will be appropriate and necessary as part of the LINk information and monitoring role that providers of health and social care services automatically provide LINks with copies of the routine complaints and adverse incident reports that are required to be produced routinely for reporting and learning purposes. These reports and other reports that LINks will receive from organisations and individuals will enable LINKs to monitor general trends and follow-up specific issues where it appears the issue may indicate a wider area of concern.

Key point:

  —  Links should receive copies of the routine reports on complaints and adverse incidents that are compiled as a reporting requirement by health and social care providers.

2.5  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?

  The current legislation on health service consultation places a duty on all NHS organisations to make arrangements to involve and consult patients and the public in the development, planning and operation of services and particularly in the event of a significant change to an existing service. The current consultation requirements are probably sufficient in breadth but not effectively implemented and we strongly support the view that the legislation on consultation is to be strengthened. Trusts are not sufficiently aware of their responsibilities or, perhaps because of practical pressures attempt to avoid or minimise the process. Whilst it is recognised that consultation exercises divert the energy and time of the personnel involved and are therefore a resource issue for the organisations involved, it is essential that that the current legislation is strengthened and that very clear guidance is issued as to when public consultation exercises must be carried out.

  PPIFs have sometimes lacked the capacity to be effectively involved in public consultation processes due to the low number of members of the average PPIF (there is a minimum requirement of seven members). However, the development of LINks with a much wider network will provide an opportunity for much more effective communication with, and involvement of users and the public in consultations. LINks will have the ability to connect with their member organisations and receive member views and responses to the consultation. During the consultation period, HOSCs will be able to enhance their response to the consultation process through information provided to them by the LINk. However, the capacity of LINks to engage with users will be dependent on the administrative resources made available to them via the support organisation.

Key point:

  —  It is essential that that the legislation is strengthened and that very clear guidance is issued as to when public consultation exercises must be carried out.

Margaret Dangoor

Vice Chair

Richmond and Twickenham PCT Patient and Public Involvement Forum

January 2007

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