Select Committee on Health Written Evidence

64. Evidence submitted by the NHS Alliance (PPI 81)

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

  1.1  If harnessed correctly, properly resourced and implemented effectively, PPI could change the face of the NHS. It has significant vote-winning potential. When local people are meaningfully involved in the running of their local heath services with positive change as a consequence, a virtuous circle of development can follow. The purposes of PPI are:

    —    At a community level: to ensure that local people are involved in the planning, the monitoring of new services and the improvement of existing ones.

    —    At an organisational level (practice/hospital): to ensure accountability for practice development and practice services.

    —    At an individual level: to ensure shared decision-making to the extent that the patient wants it, offering the informational support that the patient needs.

  1.2  In addition, if community development is used as a key approach to PPI, an additional important outcome is significant health gain through the fostering of social networks. And greater self-care.

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

  2.1  LINKs could offer excellent PPI if given the correct support and organisational frameworks (see later). We know from MORI studies that people want services to be:

    —    Representative but also local.

    —    Independent.

    —    Accessible with a wider range of people to be involved.

    —    Accountable.

      —  Change needs to happen as a result of PPI.

      —  There needs to be a democratic process underpinning PPI.

  2.2  We know, from the same source, that people want to influence:

    —    The development of new services.

    —    The improvement of existing services.

    —    The monitoring of quality.

    —    The minimising of waste.

  2.3  The approach that will work best, in the view of the NHS Alliance, has to have the following characteristics:

    —    Creates engagement without exhaustion for clinicians, the patient and publics. Brief liaisons are OK.

    —    Is flexible, drawing in a range of people in different ways and in different places.

    —    Challenges but can also co-operate with the establishment.

    —    Obtains rich ideas and recommendations.

    —    Gets changes made.

  2.4  We think that community development is the key. Community Development (CD) is a process that mobilises communities to become participants in both defining problems and developing solutions to health and health service issues, and that reaches out to those most likely to be excluded.

    —    CD works with individuals and communities.

    —    It promotes health by bringing people together in social networks.

    —    Outreach flexibility.

    —    Its raison d'etre is to get local voices heard and to support change.

    —    Interdisciplinary because it listens to what local people say—links regeneration and health.

    —    Light on practices, patient and publics.

  2.5  There are a number of examples of good practice, where CD is linked to the workings of the PCT and the local authority. I can offer more details on these.

  2.6  We also think that PPI needs to be promoted in practice-based commissioning (PBC). At the moment, despite exhortation, PPI is poorly represented in PBC. Local people should be involved in defining PBC cluster priorities, improving pathways, spending savings, monitoring quality. I can offer more details on this.

  2.7  The NHS Alliance recommends that LINKS should bring existing groups together, should harness the CD activity that is already happening in their area and should be represented on all key groups in the PCT and in PBC clusters.

  2.8  Patient access to the full GP record is essential to ensure PPI at the individual level of shared decision-making. Tailored information provision is the key, so long as the data is linked to good accredited health information that makes sense of what the patient is seeing. This is available now and promises to revolutionize care. Full record access has been shown to:

    —    Increase trust in clinicians.

    —    Improve relationships with their practice.

    —    Improve compliance in medicine-taking.

    —    Encourage preventative health behaviour.

    —    Enable patients to obtain their own health information without needing to contact the practice (allergies, immunisations).

    —    Empower patients to care for themselves more effectively.

    —    Use consultations with their clinicians more effectively.

    —    Save time for themselves and the practice.

    —    Correct errors in the record.

  2.9  These are significant benefits and are summarised on the ICMCC website By designing appropriate and additional functionality, benefits can be enhanced further.

  2.10  There are real advantages to the patient (quite apart from ethical considerations) in enabling access to the full record. This goes beyond current plans for HealthSpace and the Committee should support this development. I can offer more details on this.

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

  3.1  Although the NHS has got much better in the last 10 years at listening to what local people recommend, there is little evidence that the recommendations have led to much change.

  3.2  The key limiting factor is that NHS organisations are not flexible and they remain unaccountable. There is no overriding reason why they should listen to local people. This is why the system is felt to need changing.

  3.3  A serious worry in the current incarnation is that there still remains no guarantee that a PCT or a PBC cluster will HAVE to listen and HAVE to respond to its population. The Committee should insist on process that goes beyond Section 11: this demands that NHS organisations listen, but does not actually insist that they respond to local recommendations. The original suggestion was that new legislation would be developed that insisted that NHS organisations responded to local recommendations. This has got stuck, as I understand it, and is in danger of disappearing—the Committee needs to pursue it.

  3.4  In addition, in order to keep PPI high on the agenda for NHS organisations, the HealthCare Commission needs to ensure that its developmental standards are rigorous and stretching for Trusts and that the PPI elements from a significant part of the scrutiny.

  3.5  In our view, tipping the scales with petitions is not the way to go. They do not allow for planning and they can be hijacked by special interests.

  3.6  Another reason that reform has been called for is that CPPIH's recruitment process was complex and excluded many people—as a result PPI Forums were less inclusive and effective than they could have been.

4.   How should LINks be designed, including

  4.1  Remit and level of independence: they should be as independent as possible, both from the NHS and from the LA. The LA's supervisory role may cause problems here.

  The remit needs to be as broad as the three points at the beginning of this submission. LINKs should see themselves as umbrella organisations that harness the energy and experience of grass-roots organisations in the area. They should see themselves as focusing that heat and light on getting patient-centred change.

  4.2  Membership and appointments: for maximum efficiency, LINKs should draw on as many local voluntary agencies as possible, all of whom should have a stake in the LINK. Any individual who want s to be part of the process should be able to join. The prime approach should be to have as open an organisation and process as possible.

  4.3  Funding is essential for:

    —    Staff training.

    —    Admin.

    —    Contributors' time—there are now many effective schemes for paying local people for this kind of work.

  4.4  Support will be needed for:

    —    Training.

    —    Ensuring the right approach is taken—non-deferential and intent on securing the best arrangements for patients.

    —    Maximising the use of community development.

    —    Understanding how patient record access can make a real difference to care.

    —    Understanding aspects of the new NHS, including practice-based commissioning.

    —    Understanding how ot use the powers LINKS will have.

  The Centre for Public Involvement at Warwick University will be an excellent institution to support LINKs.

  4.5  Areas of focus: the agenda should be set by local people. However, linking with PCT and Trust priorities will need to part of the mix. Again, LINKs should be seeing themselves as umbrella groups coordinating grass-roots work. They need to be on all key Trust committees which means they will need a lot of people.

  It will also be helpful if they encourage/cajole/insist on good PPI practices in their Trust(s). PPI process should be embedded in all aspects of the organisation(s). This is currently rarely the case.

  4.6  Statutory powers: LINKs need to be able to inspect wherever and whenever they want. If they are backed up by Section 11 and any new legislation, they will have a solid basis for intervening when needed. Training will be needed to emphasise this.

  4.7  Relations with local health Trusts: if relations are poor, little will be achieved. An aggressive approach will not work. PPI services should support clinicians. They should be, if possible, not confrontational, facilitating patient panels and PPGs, helping practices respond to the wider determinants of health. They should foster an approach that says: "we are in this together, trying to improve care for patients." If all that fails, they will invoke the law.

  4.8 Relations with OSCs: I add this item. I am concerned that OSCs will not have the capacity to deal with the volume of activity that is likely to be generated by an efficiently working LINK organisation. Short of increasing their workforce, I cannot see a way round this.

5.   How should LINks relate to and avoid overlap with

  5.1  Local Authority structures including Overview and Scrutiny Committees: I understand that the LA will usually host the LINKs and will offer support and research/audit. Funds will also flow through the LA. The LA will not have any regulatory function with regard to LINKs.

  As suggested above, LINKs need to be as independent of the LA as possible. This may need emphasising given the closeness of working. If lINKs see themselves as umbrella agencies, they are less likely to duplicate work with the LA. Close working will make the use of community development more likely, as the LA will be the most ready source of CD expertise and activity.

  5.1.1  A good relationship with the OSCs is essential. OSCs will be able to more in depth work on specific issues than LINKs. So long as coordination is maintained, overlap should not be a problem.

  5.2  Foundation Trust boards and Members Councils:

  5.3  Inspectorates including the Healthcare Commission (HCC): as mentioned above, the HCC needs to develop a robust PPI agenda and developmental standards. The LINKs can harness the findings of the HCC, for instance to bolster its own work. It may be able to call on the HCC to investigate specific issues. The HCC should be able to use the LINKs' investigations and conclusions for its own reports. In summary, there are mutual interests, on the whole.

  5.4  Formal and informal complaints procedures: LINKs should be in touch with PALS which accumulate data on complaints. The LINKs should not transgress on PALS's territory and should not receive complaints directly. LINKs should be working with PALS to remedy the causes of the complaints.

6.   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?

  6.1  It depends what you mean. The job of the LINKs is to develop processes that seamlessly and painlessly enable informal public consultation all the time under Section 11. If the system is working well, it would be easy for a PCT to find out what local people feel about their cardiac services and what recommendations for change they may have. It should also be easy for local people to generate an agenda for change in, say, sexual health services if that is seen by them as a priority.

  6.2  Formal consultation needs to be instituted when:

    —    A significant change is being proposed.

    —    A petition with enough names on it is submitted (if this approach is continued).

7.   In summary


    —    PPI can be seen as occurring at three levels.

    —    LINKs should be umbrella organisations which flexibly "harvest" local views. They will enable local people to dip in and out of engagement when they want. They will also enable clinicians to dip in and out, so that no-one gets exhausted.

    —    Community development is a vital approach to ensure good engagement of local people, effective outcomes and health gain.

    —    PPI must get changes made.

    —    Patient access to their full electronic GP record is essential for effective shared decision-making at the consultation.

    —    The NHS must ensure that organisations have to be made and/or incentivised to respond to local recommendations.

    —    LINKs should be as independent as possible, setting the agenda from local people's views.

    —    LINKs need to work cooperatively with local health organisations so far as possible.

    —    Petitions are not recommended as a viable way forward.

Brian Fisher, GP

PPI Lead for the NHS Alliance

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Prepared 6 February 2007