An NHS Alliance document
INTRODUCTION
The NHS Alliance has links with the NHS grass-roots as well as a strategic view and would like to offer guidance on the development of Public and Patient Involvement
We have seen the PPI agenda slowly slipping into disarray but the White Paper on Health Outside Hospitals offers an opportunity to see PPI and community engagement in the round, integrating the process at a number of levels, building on the strong Section 11 framework.
We feel that PPI remains a vote-winner if harnessed well.
PRINCIPLES – LISTEN, RESPECT AND RESPOND – LINKING PPI, CIVIL ENGAGEMENT AND IMPROVING SERVICES
It is understood that the NHS is not an organization accountable to the communities that it serves. Nonetheless, it would be possible to enhance the dialogue between the NHS and its population. It would be possible to harness the existing trust and energy of local people to improve care and responsiveness.
The White Paper should ensure that PCTs and commissioning bodies will continue to develop Patient and Public Involvement by:
listening to local communities, respecting their views and responding to their recommendations
linking neighbourhood approaches with civil engagement and community development
supporting respect and dignity for patients by involving them in their care and sharing information and decisions with them
Principles the Alliance would like to see:
- The focus needs to be on both communities and individuals
- individuals having a say in their own care
- individuals to have more of a say in planning and decision making
- A neighbourhood focus will become increasingly important as practice based commissioning begins to bite
- Local communities need to influence the planning, the policy , the implementation and the monitoring of health activities.
- Involvement needs to be supported at all levels from patient/clinicians/pharmacist to PCT and PBC groups
- Integration of PPI within PCTs and practices
- Real changes resulting from PPI.
The aim of PPI is to hear what patients are telling us, respect those views without necessarily doing everything that is requested and to respond by making changes.
The performance of these principles to be monitored and incentivised robustly by the Healthcare Commission so that PCTs fully integrate PPI into their work.
It may be possible to take PPI to a further stage by accepting ideas such as:
community-run mutual organizations taking over services such as general practices.
Elected representatives on PCTs or practice boards.
THE CURRENT SITUATION AS WE SEE IT
PPI structures remain confusing. The recent history of the CPPIH is a case in point.
There is little confidence in the influence of PPI on PCT developments
There is very variable progress on PPI in PCTs
There seems to be few links between key NHS themes such as Choice, practice based commission, Wanless and Community Engagement, PPI and work on long-term conditions. There are few links internally in PCTs between PPI and most directorates, particularly Commissioning and Estates
PPI Forums being asked to do things they cannot. There is also a lack of clarity of role. It seems unclear how PPIFs should link with other local PPI initiatives
Minimal guidance re PBC and PPI. Currently there is no PPI or patient representation on workstreams looking at PBC.
Inadequate financial support for PPIFs.
There are excellent examples of good practice around but they rarely integrate fully into PCT work and only occasionally lead to substantial change. PPI leads are very enthusiastic but often feel that the PCT does not support them adequately.
Evidence on effective practice is not being used. For instance, the building of social networks has been shown to protect health substantially. Community development is being underused when it can promote both social networks and PPI simultaneously. (Appendix 3)
THE VISION
At the consultation – Choice means more than offering different providers. We want users of services to be making real informed choices
Shared decision making supported by decision aids through kiosks in the waiting room
Record access both in kiosks at the practice and on the net
QOF processes to incentivise better relationships and consultation technique
Patients as Teachers programmes could train clinicians nationwide in effective care from the patients’ points of view
Thousands more Expert Patients need to be trained and also train clinicians. The programme could be run by practices and graduate primary care health workers. NHSU has piloted EPP alumni as mentors of chronic disease management teams
The approach to patients with Long-Term Conditions will support patients by encouraging self-help by offering more relevant information, using group appointments, record access. This will be incentivised by the QOF.
Taking on social services’ idea of direct payments: offering patients with Long Term Conditions budgets to enable them to buy items that they know would assist their care and the management of their condition
At the practice level
National support for patient groups and/or panels. This could be one role for the proposed new National Centre for PPI. It might mean building capacity of patient participation groups and linking them with PPIFs at PCT level – also to get them involved in PBC.
·Practices need to understand that they also have a responsibility under Section 11. Support and training in this is needed.
Patient views involved in key issues such as:
- Choosing new partners
- Developing the business plan
- Staffing strategies
Strong links with neighbourhood voluntary groups supported by Social Prescribing Projects linking practices with local voluntary agencies for advice and referral
The development of practice councils similar to those of Foundation Hospitals could be considered.
QOF both in the practice and via the net could incentivise
- Patient groups or panels or advisory planning groups
- Patient involvement plans
- Changes made as a result of patient involvement plans
- Evidence of links with local community groups
- Practice based commissioning
National standards should, as part of the C17 standard, be drawn up by the Healthcare Commission that will encourage the following, These ideas should and be part of the criteria for assessment. In turn the criteria should be drawn from what patients and the public groups say should be in there.
Local involvement by individuals and community groups in the priorities of their PBC group
Monitoring of effectiveness and quality of commissioning by patients by questionnaire or by more qualitative means
Agreement by local people and community groups in the spending of any savings by the PBC group.
Neighbourhood
There is a risk that, as PCTs enlarge, local involvement will become even more attenuated than at present. It will become even more difficult for local groups and local people to influence policy, planning, implementation and monitoring. It is at this level that engaging with communities becomes most appropriate and powerful. The following systems need to be in place:
Community development organizations must be supported by PPIFs and PCTs. These organizations, while working with hard-to-reach communities of all kinds can be feeding back views and opinions to the PCT and to PCB groups
A community development strategy linked to the PPI strategy needs to be developed by every PCT.
Community development approaches to long-term conditions should be developed in each PCT.
Strong links with the Local Authority can be constructed at this level, with Commissioning Groups working closely with neighbourhood council structures
Joint PCT/LA community development posts to be agreed and funded.
PCT/HCOs/Local Authority
There are key processes that need to happen at this level to support effective PPI. To encourage and incentivise these, the following need to be managed by SHAs and the Healthcare Commission. The criteria for the HCC need to be specific and explicit about these approaches. These include:
PPI integrated in all sections of the PCT. Every directorate should have a clear way of engaging with local communities to guide their work, within the overall PCT strategy.
Messages from the grass-roots to be effectively and rapidly transmitted to governing bodies such as PEC and Board. Clear accountability measures to show what responses have been made to theses local recommendations.
Community development and PPIF representatives to be part of the Professional Executive Committee and Board.
The Board will account for the PPI activities of the PCT to the PPIF once a year at least.
There must be PPI in the development of the Local Development Plan or equivalent – this must be demonstrated to have occurred.
Strengthen public health departments in PCTs, supporting community development to become an important part of their work.
Medical student and clinician training
Patients are part of student training
Patients as Teachers could train clinicians nationwide in effective care from the patients’ points of view.
Record access will lead to discussions about how to write records so that patients can more easily understand them.
There needs to be extensive training for a shared decision making approach for clinicians. This is essential to underpin effective interventions for patients with long-term conditions.
Appraisal for GPs to include a discussion on PPI at consultation and practice level.
STRUCTURES AND PROCESSES TO SUPPORT THE VISION
1. Patient and Public Involvement Forums or Overview and Scrutiny Committees?
This paper accepts that PPI Forums may not remain. For the purposes of this paper, as the functions so overlap, it may be simpler to consider what either OSCs or PPIFs could do – so long as there are only one organization, not two.
There are two main issues: what should their main functions be in the future and following on from this where should they sit in the system?
What PPIFs or OSCs should do:
Currently, their role is primarily scrutiny, acting as a critical friend and intervening only when significant changes are made by PCTs. They are variably integrated into PCT thinking and they have inadequate capacity to become fully involved.
The Alliance sees the key PPIF/OSC role as an umbrella organization, building on the best from across the country and activating and supporting existing groups and existing energy. The question is how to best harness what already exists and build on it. The forums/OSCs do not need to do the work themselves, but they need to encourage it and ensure that Trusts (who have a statutory duty under Section 11) engage properly.
- umbrella organisations for local activity
- ensure good practice in PPI within trusts
- be on key committees, including PBC
- major on Practice Based Commissioning
- support the most effective initiatives
- Community Development
- Patients As Teachers
- Patient Participation Groups
- Engage with communities, not just individuals through community development which they should encourage their PCT to develop
Where PPIFs/OSCs should sit:
This may not have to be the same across the country. There are advantages in having a PPIF/OSC across primary and secondary care including specialist trusts and mental health trusts. If that is the structure, more people will need to be involved in each PPIF/OSC.
in PCTs or equivalent
relate across hospitals and PCTs
based in the community
In any case, it is important that
their roles are clarified
they are provided with adequate capacity;
they are provided with support and learning for members
Relations with PALS
Here the roles overlap more. PPIFs/OSCs should be working with PALS on trends in complaints and ensuring that PCTs respond holistically and imaginatively: they should be looking beyond blame. PPIFs need to ensure that Trusts have systems and processes in place to take this information (one part of overall data on patients experience and PPI activities) and do something about it.
Relation with PEC and Board
PPIFs/OSCs should be represented on both bodies. They could be supported on the committees by representatives of voluntary agency umbrella groups or local community development agencies. Their role again would be to encourage and support PCTs into ever better PPI, ensuring that trusts link innovatively with local voluntary agencies and the LA.
2. Quality & Ooutcome Framework
The QOF is a powerful incentive to changing practice. The following changes could be incorporated to improve the attention directed to PPI and its functioning:
Practices should demonstrate that they are supporting a patient participation groups or panels or advisory planning groups
Practices should demonstrate that they have developed patient involvement plans: a strategic approach to PPI for the practice
Practices should demonstrate changes made as a result of PIPs
Practices should get rewarded for demonstrating that they have involved local people as a part of PBC
Ensure that feedback as part of QOF points leads to sustainable involvement in practice based activities as part of Section 11 responsibilities
3. THE HEALTHCARE COMMISSION:
There is a range of changes that the HCC would need to make to maximize benefits from PPI. These are laid out in Appendix 1.
4. NICE
The key change here will need to be the inclusion of patient-defined guidelines into NICE’s processes. NICE has developed very convenient and clear guidelines written in clear lay language.
The Alliance is suggesting that NICE use the Patients as Teachers process to develop guidelines that are written by patients for professionals, offering guidance on good practice from the patients’ points of view.
The PAT process is summarized in Appendix 2.
3. NHS CONNECTING FOR HEALTH
There are many opportunities for PPI in the CfH programme, many of which are already being harnessed. The Alliance would advise a number of enhancements:
Record Access should be full, to the whole record, not just to the spine. It should be available in kiosks in the surgery as well as on the net.
The Map of Medicine should incorporate patient-defined guidelines, derived from the PAT process (Appendix 2)
Decision Aids need to be vetted by patients who would be likely to use them.
NHS CfH could develop approaches that would more effectively link communities with PCTs and practices. Also, there are a number of examples of software helping local people share ideas and structures at a local level. These could be incorporated into CfH.
4. LOCAL AUTHORITY
When PCTs become co-terminous, opportunities for extended the reach of PPI arise. These opportunities could be elaborated and developed by joint work between DH, ODPM and the Home Office Civil Renewal Unit.
Joint PPI manager appointments
Joint community development worker appointments to carry out work at neighbourhood level, supporting PBC and LA priorities.
Co-terminous links between PBC groups and LA neighbourhoods.
Links between LA neighbourhood management groups and PBC and PCT commissioning groups. There could be very useful work on local issues such as crime, drugs, smoking cessation, support for patients with LTCs
Links with New Deal communities and PBC groups
Links between Sure Start community development approaches and the PCT’s community development
There are interesting questions about how far the LA should become involved in the PCTs. Our view is that links should be increased and that the LA, through the OSC could become far more important as a vehicle for accountability.
5. HOSPITALS AND FOUNDATION TRUSTS
Foundation Trusts’ (FT) experiences with their patient Boards needs to be disseminated.
It is likely that FTs will see the advantage of outreach work in local communities in order to reduce the burden of disease but also to encourage referrals. Links with community development could be encouraged. For instance, Cardiac departments could be working with PCTs to work more closely with BME communities to raise awareness of hypertension and its treatment. In response, cardiac departments would need to listen to their BME patients and tailor services and maybe the siting of those services to the needs of those communities. A dialogue to improve care.
APPENDICES
APPENDIX 1
SUGGESTIONS FOR THE HEALTHCARE COMMISSION: POPULATING THE STANDARDS WITH CRITERIA
The standards are:
safety,
clinical and cost effectiveness,
governance,
patient focus,
accessible and responsive care,
healthcare environment & amenities and
public health.
The aims of this exercise:
1. to encourage HCOs to contiinue to develop Patient and Public Engagement – essentially Core Standard C17: “the views of patients, carers and others are sought and taken into account in designing, planning, delivering and improving healthcare services”
2. to encourage Trusts (particularly PCTs) to engage with their communities
I include 2 appendices:
· an approach to PPE and clinical governance that might be helpful at general practice level.
· the process of Patients as Teachers which is a useful practical tool for Trusts.
Principles of the approach:
PPI
There might be two main ways of doing this: include PPI in every standard, or to include PPI in only those with relevant titles. I would recommend the former, to try and ensure that PPI is integrated at every level and in every activity.
Community engagement
This would fit most appropriately in standards Public Health, Patient Focus, Accessible and Responsive Care.
Community engagement includes the following concepts:
improving the health of individuals and communities
increasing social capital,
improving economic viability of communities
communities shaping services – PPI
improving the community’s capability to take responsibility for their own health,
increasing accountability
It thus has a broader scope than PPI.
Easy, but robust data
It is important to make this as easy as possible, but the data does need to be robust. This might mean some deliberate audits by Trusts to examine progress.
Real change
A CHI report points out that Trusts are listening more than before to their local populations, but that changes do not result from this local intelligence. It is important that the next phase encourages real change.
It is therefore also necessary that the Healthcare Commission not only focus on structural issues such as PPI strategies being in place, but ensures that Trusts show that changes have resulted from engagement with their local population.
Bespoke surveys:
Tailor investigation to different HCOs with different items.
PPE as a proportion of the whole
In order to ensure that PPE is taken seriously, it may be appropriate that PPE criteria as a whole should represent say 20% of the overall rating.
We would therefore suggest the following criteria.
Safety
Patient views are investigated either locally or by reference to the literature as to what safety issues are paramount.
These views are incorporated into safety plans and implemented.
The changes made as a result can be demonstrated.
Patients are encouraged to report safety issues to PALS
A no-blame culture is encouraged and documentation to that effect is available
Clinical Cost Effectiveness
Patient views are investigated, either locally or by reference to the literature, to ascertain what they see as effective from their points of view. (Patients as Teachers (PAT) is helpful here)
These views are incorporated into plans and implemented.
The changes made as a result, which might include changes in clinician behaviour or systems, can be demonstrated.
The Trust can demonstrate programmes that ask patients were they see waste occurring
These views on waste lead to demonstrable change
Governance
Patient views are investigated, either locally or by reference to the literature, to ascertain what they see as good quality from their points of view. (PAT is helpful here)
These views are incorporated into plans and implemented.
The changes, which might include changes in clinician behaviour or systems, made as a result can be demonstrated.
Monitoring of these outcomes either by users or professionals must be demonstrated.
Recruitment interviews should include users
In primary care, nGMS patient questionnaire results form the evidence for change.
Patient Focus
These criteria are amended from the NATPACT competency Framework.
Listening
Does the local delivery planning process involve local people and their organisations? Give examples.
Does the PCT use a range of methods to assess and respond to patients’ experience, including the Patient Prospectus and community development? Give examples.
Does the PCT bring a patient and user focus to the re-engineering of services? Give examples.
Structure
Evidence of an organisational development strategy supporting PPE that is quality assured through feedback from local partners?
Are PALS activities and contacts recorded, evaluated and utilised by the trust and its staff at all levels?
Does the board make sure that mechanisms are in place throughout the PCT to ensure improvement as a result of scrutiny, including development of local agreements with patient forums?
Change
Can the Board demonstrate how patient and public involvement has impacted on service development both through systematic evidence of improvement and through illustrative examples?
Accessible and responsive care.
Planning
Are BEM views sought?
What change has resulted?
Patient views are investigated either locally or by reference to the literature as to what issues they deem important.
These views are incorporated into plans and implemented.
Demonstratethe changes made as a result.
What systems are in place to support community engagement? Does this include community development?
Delivering
The nGMS questionnaire responses are improving each year
Can the Trust demonstrate that shared decision-making takes place? For instance, using decision aids for patients.
Are communities of interest (for instance patients with heart disease r patients involved in NSFs) consulted about the delivery of their care?
Demonstrate the change that has resulted
The patient questionnaire results improve every year.
Improving/monitoring
Demonstrate in 2 NSF areas that you have determined what issues matter most to patients
Demonstrate how patients contribute to the monitoring of the quality of the services in those 2 NSF areas
Healthcare, Environment and Amenities
Patient views are investigated, either locally or by reference to the literature, to ascertain what outcomes they see as appropriate from their points of view. (PAT is helpful here) For instance, if car parking is identified by local people as an issue, it is seen to be tackled.
These views are incorporated into plans and implemented.
The changes made as a result can be demonstrated.
Questionnaire results on hotel facilities improve year on year
It can be demonstrated that LIFT programmes in primary care:
Consult with users both about form and content of new build
Consult with local people (inc voluntary orgs) about supporting capacity-building activities in the new building
Demonstrate that these ideas have been included in design
Public Health
Is the PCT involved in local regeneration, neighbourhood renewal programmes and public health initiatives, using community development and maximising their impact on health improvement and health inequalities, community skills, knowledge and confidence?
Does the PCT involve the community in defining service needs and responsiveness, particularly by using community development?
Demonstrate the changes that have resulted from responding to those needs
Does the PCT work together with the local authority/council and community organisations to develop and implement the local compact?
APPENDIX 2.
COMMUNITY DEVELOPMENT AS A KEY APPROACH FOR COMMUNITY ENGAGEMENT, PPI AND THE DEVELOPMENT OF SOCIAL NETWORKS.
A paper from the NHS Alliance
INTRODUCTION
This paper suggests that community development should become a key method for PCTs to use for both health gain and for PPI. If this becomes widespread, there is likely to be improvements in health in the long-term with other benefits to joblessness and crime.
There is potential to build this into the White Paper on Health outside Hospitals, linking it with the Choosing Health white paper which touched on these issues. The paper looks at the following issues:
Social Networks
There is little guidance about how to engage communities
There is excellent evidence that social networks are very health protective
Community Development (CD) is a key to improving health, supporting work on Long-Term Conditions, improving PPI
Community Development
What it is
Benefits of CD
Links with ODPM
Links between PCTS and local authorities
Evidence of changes
SOCIAL NETWORKS, COMMUNITY DEVELOPMENT AND HEALTH
There is little guidance on how PCTs engage communities as a whole. The main thrust of, for instance, the HCC, is focused on individual involvement – which is, of course important also.
The key to engaging with communities is through community development (CD). This is a process, usually supported by CD workers in neighbourhoods, that mobilizes 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.
Significant health protection is achieved by bringing people together through encouraging the formation of networks.
Confidence increases,
transferable skills are learnt, people make friends.
leg ulcers improve when people become less lonely
and child health is better as networks become denser .
Survival rates following major surgery or illness in later life are strongly predicted by the presence of close confiding relationships
People with strong networks recover better from cardiovascular disease .
joining a group halves one’s chances of dying within the next year.
Reduction in falls, as shown in the Gateshead trials
The Office of the Deputy Prime Minister and the Home Office has much experience of community development and this needs to be brought into the DH more prominently. The Alliance is trying to promote this.
CD can best be delivered at a neighbourhood level in PCTs, linking with general practices who have long known that much of the disease we see has social and economic determinants. CD workers can be jointly funded by PCTs and local authorities and could focus on issues such as:
Listening to people with long-term conditions and facilitating the dialogue
Underpinning the PPI aspects of practice-based commissioning.
There is an excellent model of this kind of approach in Lewisham, SE London, the Lewisham Community Development Partnership. Here, a CD organization is offering PCT-wide services, working with the PEC, neighbourhoods and individual practices, as well as linking with local authority structures and training. Their evidence of local people’s views have altered PCT decisions on a number of issues. There are many others across the country.
The implication of this evidence is that supporting PCTs in engaging with their communities will reap significant health and social rewards for individuals, communities and the State, with a positive impact on health, education, joblessness and crime.
EVIDENCE OF CHANGES RESULTING FROM COMMUNITY DEVELOPMENT IN PRIMARY CARE.
These are some activities that LCDP has sustained:
supporting practices in involving users, the public and carers
developing and sustaining an ICAS
ensuring a community development presence in each neighbourhood
helping to develop the Lewisham User Involvement Strategy, including a strong commitment to community development
supporting a number of Lewisham-wide initiatives including
mental health initiatives supporting particularly issues of race
a food co-op
a support network for young parents in a local housing estate
improving children’s and young people’s services on another local estate
a number of reminiscence groups
work with young people and sexual health
work on an estate which has resulted in a substantial drop in crime
advice to practices on PPI which has resulted in a number of patient Participation groups starting up.
involvement in a wide range of committees in the PCT, including developing public involvement in developing the Local Delivery Plan which sets out the financial map for the next year.
supporting lay involvement in practice-based commissioning
This is an excellent example of how community development has been used to:
enhance PPI at practice, locality and PCT levels, enhancing their options
gather the opinions of local people on a range of issues and support change in response to those, thus operationalising choice at a collective level
influence the PCT in developing strategy, supporting lay peoples’ influence on the system
improve the health of local people by improving networks and reaching disadvantaged groups
Health Guides in Tower Hamlets. After training, Health Guides run group sessions for up to 20 local people at a time in their mother tongue, finding out what people are concerned about and then informing them about how to get access to the services they need, how to communicate with services, clarifying expectations of what services can provide, promoting healthy living.
Sessions are participative, interactive, engaging with the issues raised by group members to find solutions and overcome barriers. Through the provision of specific information and know-how, local people learn how to use public services positively, and gain confidence in doing so. Social networks and communication lines are established enabling easy further communication in the ongoing process of information dissemination on service changes by public agencies out into local communities.
Around 5,000 Bengali, Somali and Turkish/Kurdish people will have participated in Health Guides sessions by the end of March in community settings across Tower Hamlets, Newham and Hackney.
CONCLUSION
The Alliance recommends that community development be promoted across the NHS and would be happy to work with the DH on developing these concepts.