Select Committee on Health Written Evidence

93. Evidence submitted by South East Coast Strategic Health Authority (PPI 112)

Key Points

  1.  The over riding purpose of Patient and Public Involvement is to improve the services which the NHS and other providers offer and so improve the:

  Experience that patients and carers have of these services. Patient and public involvement also serves to make the NHS more accountable and responsive to the communities it serves and people who pay for it.

  Patient and public involvement in various forms has been around since the 1970's. The Health and Social Care Act 2001 has led to a greater effort and consistency of approach across the many organisations within the NHS. The latest reforms will strengthen and extend this to include social care, the regulatory bodies and external providers. Then also seek to broaden the independent scrutiny and monitoring of health and social organisations, so that staff more actively shape the development and delivery of services.

  Conclusion: Engagement and a better understanding of the NHS could extend into a wider public understanding of health and social care issues. This would encourage a more active citizenship, prepared to act on and take responsibility for improving their local communities as well as improving their own health and quality of life as individuals. Thus in the long term, people's involvement and engagement with the public sector can make services and the communities served more sustainable, based upon an increase in social capital and the better integration of people's needs with the services provided and a stronger ethos of partnership working to tackle together some of the long term health and socio economic problems.

  2.  Patient and Public involvement offers good value for money when its approach is proportionate to the desired outcome. It should operate across a number of levels from information, through participation to partnership, and should use a variety of tools and techniques based upon what works best for those patients, carers, staff and stakeholders you intend to engage with.

  Having a range of voices taking part in planning patient and public involvement should ensure the delivery of good engagement processes.

  Conclusion: NHS organisations need to ensure they invest the appropriate time, commitment, resources and drive to deliver good PPI throughout all the services they provide. This will lead to the desired cultural change, putting patients in a position to truly shape and influence service to improvements for themselves and other people.

  3.  As a minimum, Section 11 of the Health and Social Care Act 2001 places a duty on Primary Care and NHS Trusts and Strategic Health Authorities to make arrangements to involve and consult patients and the public:

    —  not just when a major change is proposed, but in ongoing service planning;

    —  not just in the consideration of a proposal, but from the outset in the development of that proposal; and

    —  in decisions about general service delivery, not just major changes.

  Recent changes to the Commissioning Framework have resulted in an additonal duty to respond.

  Section 7 of the Health and Social Care Act 2001 gave powers to Local Authorities to establish Overview and Scrutiny Committees to:

    —  take on the role of scrutiny of the NHS—not just for major changes but for the ongoing operation and planning of services;

    —  refer contested service changes to the Secretary of State;

    —  call NHS managers to give information about services and decisions;

    —  report their recommendations locally; and

    —  be consulted by the NHS where there are to be major changes to health services.

  Section 11 requires that the NHS engage people in all circumstances when the NHS are changing and improving services, since this is a constant process of improvement for any public service. In the NHS as in other public services there are many and varied ways for patients, staff and the wider public to improve the way the NHS and other providers offer health and social care services.

  Conclusion: Wider, formal consultation is guided by the findings of Health Overview and Scrutiny Committees (HOSC's) and is dependent upon such terms as "substantial" and "significant" changes, which are difficult to define. Therefore, there is often a process of negotiation to clarify what should happen locally on a case by case basis and it is beholden on local NHS organisations to involve HOSC's early in agreeing what should be taking place.

Question 1

The purpose of Patient and Public Involvement is to improve the patients' experience of health and social care and to improve the services offered

1.  Introduction

  Members of the patient and publics who use NHS services have been involved in commenting on how services are delivered since the 70s. The original premise for this involvement was for Community Health Councils to monitor and review the National Health Service and to recommend improvements. Since the Kennedy report on the Bristol Inquiry and the Health and Social Care Act 2001 the move has been to ensure that each NHS organisation has a statutory duty to ensure patients, carers and staff are part of team improving the NHS and its services by engaging directly with them and listening to their views and ensuring they shape the improvement of services. This has led to a significant increase in the level of involvement and the consistency with which all NHS organisations listen to patients and the public, there are a variety of ways in which people are able to have an impact on improving services from talking to Patient Advice and Liaison Services to taking part in a review of services there are many more opportunities for patients and carers to influence the way services are delivered.

  This paper describes the framework in place in the SE Coast that is to support the transformation of public patient and community engagement in the NHS from being an "add on" to being an integral part of business. Whilst the recent local government bill and changes in the commissioning framework strengthen the need for the wider public sector to work in a more integrated way with their citizens and service users to ensure more sustainable communities. The nature of Patient Public Involvement and evidence in this field, suggest that an evolutionary approach that builds consensus and engages participation, leading to sustainable action, is the most successful approach, enabling the local NHS to fulfil its responsibilities under section 7 and 11. The question we address is how will the proposed reforms add value?

2.  Context

  The NHS Plan 2000 clearly established the Government's intention that patients should be "at the heart of the NHS". The Government sees patient and public involvement as central to service planning and provision and a major driver for service improvement.

  The 2005-08 NHS Improvement Plan Putting people at the heart of public services set out the Government's vision for an NHS that is modernised to meet people's increasing ambitions and expectations for public services.

    "An NHS which is fair to all of us and personal to each of us offering everyone the same access to, and the power to choose from, a wide range of services of high quality, based on clinical need, not the ability to pay." (The 2005-08 NHS Improvement Plan Putting people at the heart of public services)

  The guidance Creating a patient-led NHS extends the government's ambitions towards changing "the whole system so there is more choice, more personalised care, real empowerment of people to improve their health—a fundamental change in the NHS relationship with patients and the public."

  The recent white paper: Our Health, Our Care, Our Say focuses on a strategic shift towards locating more services in local community settings and closer to people's homes. It will also change the way services are offered in the community. During the consultation, people told the government they want a more personal service rather than a one size-fits-all approach—services that put them in control. So the NHS needs to provide care that is led by the individual, not led by the system or restricted by bureaucracy. And health and social care need to help people with the information and support they need to take control of their own health and well-being. And the recent local government bill ensures that both health and social care will contribute to a step change in empowering local people to shape local services and to meet local needs.

3.  National Vision and Principles

3.1  Principles

  Creating a patient-led NHS sets out core principles that underpin the shift in emphasis from the NHS providing services for the public to an NHS that works in partnership with patients, carers and the public to improve their health and wellbeing, together with the services that support this.

3.2  Partnership between NHS and the Public

  The idea of partnership between the NHS and the public is not new. Much patient and public involvement is already being carried out through delivering and improving services and other activities within the NHS. Furthermore, some progress has been shown in the results of patient surveys and the evidence of service change based upon the views of staff, patients and the wider public. There is a national PSA target for Patient Experience for 2005-08 which informs part of NHS Local Delivery Plans and service improvement, monitored through SHA's by the DH Recovery Support Unit which states:

    "Organisations should secure sustained national improvements in NHS patient experience by 2008, as measured by independently validated surveys ensuring that individuals are fully involved in decisions about their health care, including choice of provider."

  To be effective Patient and Public Involvement needs to be conducted on two levels:

    —  the individual level—involving patients in discussions and decisions concerning their own individual care and treatment; and

    —  the collective level—involving patients, carers and the wider public in broader considerations regarding the planning, provision and monitoring of services.

  At both levels there is a continuum of involvement, (see question 2) which breaks down into three broad areas: Information, Feedback and Influence.

   Information - where an organisation informs patients, carers and the public, to promote informed use of services and choice.
   Feedback - where an organisation collects feedback from the patient experience, through qualitative and quantitative methods. The purpose here is to improve the quality of service delivery and the patient experience.
   Influence - where an organisation involves patients, carers and the public in policy and planning, or in decisions concerning resources, planning and reconfiguration. The purpose here is to improve the quality of decision making and promote accountability.

  Question:   Will LINKS provide a constructive sustainable compliment for involving local people?
  Question:   Will LINKS be able to reach those traditionally distanced by mainstream systems?

3.3  Long term cultural change and service improvement

  The involvement of patients, users and the public has driven cultural change in the NHS over the last six years putting individuals and communities "on the inside" of the care system. NHS plans have deliberately emphasised that the service should not only be patient centred, focusing on need, but become a "Patient Led NHS" where patient and public views shape and inform policy and services so that the NHS is truly tailored to people's requirements.

  The aim is to ensure that the NHS and care services are transformed through better engagement with patients, users and the public by engaging local people, regularly seeking out and acting on their views and so creating responsive services that people perceive to be improving. The overwhelming and ongoing purpose of patient and public involvement or engagement is to improve the patient's experience of health care. That tangible improvement to services and systems will be made as a result of peoples' views, complaints, involvement in changing services, or choosing to volunteer or actively increase the range and support of services.

3.4  Increased accountability and sustainability the "fully engaged scenario"

  With patients, partners and the public influencing change in the NHS there is an increased public accountability of the National Health Service. Fundamentally, citizens have a right to be involved in decisions which affect their lives whether as patients or carers or taxpayers, people should know about and be party to decisions which affect their health and wellbeing as individuals and as members of their communities. Research has shown that empowered patients who understand the services and the choices available to them make better informed decisions.

  Derek Wanless in his papers for the treasury: Securing our future health: taking a long-term view (2002) and Securing good health for the whole population (September 2004), has clearly documented that one of the key means to achieve sustainability is a "fully engaged"' population which is capable of taking greater responsibility for maintaining and improving their health and wellbeing, so that the finite resources of health and social care can be used effectively to support those who require additional assistance. This approach enables people to sustain an independence and quality of life with adequate public health and social care resources at our disposal. Rising patient and public expectations will place increasing demands on those providing healthcare, calling for continuous service improvements.

  There is a wide spread recognition that the health system needs to become more people centred with the interests of the public, patients and customers given greater prominence and more influence in decision-making at all levels. This will create new opportunities for people to take an active part in managing their own health and become "expert patients" in managing their care with support from health professionals.

  The Transforming Chronic Care Programme (TCCP) in Surrey and Sussex conducted a survey of almost 24,000 people with long term conditions or their carers which showed that: people generally felt they needed more information about their condition and their care, better access to services and more involvement in planning services and care. They said they felt health and social care services staff did not work in partnership and services were not integrated. The TCCP set up a service user group comprising over 100 members. Top of their agenda was to empower people with long-term conditions to express their needs more confidently when working with health professionals which they felt could improve their involvement in planning their care. Delegates at a meeting in September 2006 said they did not always find it easy to express themselves when talking to clinicians and that this prevented them from taking control of the management of their care, particularly in a large county where there is a two tier system and Local Strategic Partnerships in place. It will be interesting to see how LINKS can add value to these current planning processes.

3.4.1  360 Evaluation

  The NHS is a national service which is continually striving to improve—its overall services, its staff, technology and techniques, and the overall patient pathway. This requires constant and ongoing evaluation of the services currently provided, identifying ways to improve and strengthen services and systems. The expertise of staff, patients, carers and clinicians is needed in order to make those improvements to systems and services. If the patient and public perspective was missing from this evaluation process, the learning would be limited and understanding incomplete.

Question 2

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

1.  Introduction

  There is no single solution to effective patient and public involvement. Best practice and experience show that a suite of methods is desirable if engagement is to be meaningful. Appropriate practical choices from that suite can be made to ensure good value for money. At the same time the programme of involvement should be systematic and consistent, supporting health communities to:

    —  Ensure high quality outcomes of value to users and communities.

    —  Transform services through continuous learning and improvement based on people's (staff and stakeholders) feedback.

    —  Ensure improved services are responsive, accessible and accountable to local populations.

  Being responsive to patients' experiences as consumers of our care and listening to people in local communities is paramount to ensuring that where, when and how services are delivered is appropriate to local need. Without first capturing and being responsive to the needs and wishes of patients, users and carers, we will continue to experience poor use of resources and less effective care.

  This continuum demonstrates the levels of engagement, from giving information through to the fully engaged level of "partnership". Good engagement should be at a level proportionate to the expected outcome.

  For example: a one-off focus group aimed at mapping patient information, which leads to the implementation of improved information, provided to patients in a timely fashion is a valued outcome. Equally, the involvement of patients and carers at the beginning of a cross sector service review which continues through to implementation of a consolidated specialist service in two centres of excellence is of value to the whole health community and several organisations. An example of service user engagement in the Renal and Vascular Review of services across Kent and Medway appears in Appendix 1.

  Both these examples benefit and improve the patient experience, but they are each of a scale of time, resources and involvement applicable to the needs and outcomes.

  Good patient and public involvement and engagement ensures patients and communities become more empowered, able to make choices as consumers about how, where and when they access and utilise services (or choose not to). Services need be customised to individual needs. At the core of the fully engaged scenario is the need for people to feel more confident in themselves and their future in order to take more responsibility for their health and make changes in their choice of lifestyle. It is also about enabling people with long-term illnesses or medical conditions to have a better quality of life.

  In order for our stakeholders/patients to become fully engaged we must:

    —  Address problems that people have with finding appropriate information about their health.

    —  Ease difficulties people have in considering the wider social costs of particular behaviour.

    —  Address the inequalities that arise from socio-economic or differences and ingrained deprivation.

1.1  How can we do it?

  Not only must people take action to manage/maintain their own health, but organisations such as the NHS, local authorities, businesses and voluntary and community sector organisations must also get involved in local partnerships. This will Increase the social capital that a healthy active community can offer, not just in terms of improved health and social care but in the broader gain in communities which are actively trying to improve their quality of life and socio economic standing.

2.  The Role of the Strategic Health Authority (SHA)

  The role of the SHA is to ensure the local NHS organisations in its area fulfil their statutory responsibilities to ensure patients/users, carers and public are consulted and involved in the commissioning, development, planning and operation of services. The methods used may vary according to the type of organisation and the nature of their relationship with users. For example: Ambulance Trusts have a naturally transitional relationship with many of the users and so rely upon PALS, and comments received via surveys or occasional focus groups/events; whereas Mental Health Trusts often have sustained relationships with service users over a number of years, resulting in the users increased ability to be involved in a variety of work at a number of levels of governance and engagement.

  The SHA performance manages the organisations in its area and assesses their progress in the development of PPI, identifying areas of strength and areas which require further development. See Appendix 2.

  The SHA is working with the organisations it supports to ensure they:

    —    Build infrastructures, systems and processes to develop robust and systematic involvement and engagement of a wide range of patients/users, carers, citizens and communities in all aspects of the organisation's work.

    —    Involve the patients and the public in service planning, design, development, delivery, evaluation and improvement, commissioning and contract/quality monitoring governance, regulation and inspection, recruitment and selection.

    —    Develop appropriate proactive approaches to involving "hard to reach" groups with particular emphasis on equalities and tackling inequality to ensure organisations are responsive and accountable to all sections of the community.

    —    Develop and maintain an open, two-way, ongoing engagement with patients/users, citizens and communities to identify opportunities, challenges and options for change in particular when consulting and involving patient/users, citizens and the community from the outset of any reconfiguration or service change.

    —    Begin PPI from initial discussions not when proposals have been drawn up.

    —    Explain the need for change quickly and clearly, creating an honest dialogue about "trade-off's" and the potential impact of patient/public chosen/preferred options on their health economy.

    —    Demonstrate active engagement in tackling discrimination, and reach out to work with differing parts of the community where it is suitable and comfortable to engage with them. Including the engagement of Patients fora, PPI Forums and community representation in the development of strategy and actions to tackle discrimination.

    —    Publish regular reports detailing what the organisation has done differently as a result of user/public views, explaining why some suggestions may not have been taken forward and responding to the varying needs of the communities served. 

3.  The Role of the PCT's and Trusts is to

    —    Ensure access to and choice of appropriate services with high levels of support and information for patients to make choices.

    —    Encourage and support self care, and wellbeing for the population served.

    —    Support health literacy and on going proactive information and communication.

    —    Involve patients and public in defining service requirements (health and social care) for commissioning purposes including Practice Based Community (PBC).

    —    Monitor quality of provision (contract management) and ensure services are appropriately shaped, through an interface with providers, and with the involvement of patients/public.

    —    Meet national standards and National Service Frameworks

The Role of Foundation Trusts and other Trusts and providers is to

    —    Involve and empower patients.

    —    Reach out to and engage with local communities.

    —    Be accountable to local people through, for example, Membership of their Foundation Trust, governance structures etc.

    —    Ensure consideration of Overview and Scrutiny Committee (OSC's), Local Strategic Partnerships (LSP's), Local Authorities (LA's) and Patient and Public Involvement Forums and potentially LINks (PPIF's) etc.

    —    Meet Healthcare Commission standards.

    —    Ensure membership will need to explore potential interaction with LINks to engage wider communities.

4.  Full Engagement in Service Improvement. In some Circumstances, the SHA, PCT'S and Providers Need to Work Together and Focus on Two Key PPI Actions

    —    Ensuring a range of appropriate and effective approaches is used to involve and engage patients, users, carers and the communities from all sections of the population particularly those from hard to reach communities and those with communication difficulties.

    —    Establishing a process for systematically collecting, analysing and acting upon patient and public views and ensuring this feedback directly influences and informs plans and activities.

4.1  Key Criteria

  To ensure a patient-led approach, all stages of the work/planning should offer evidence to demonstrate that:

    —    Patients and the public have been involved in detailed discussions—what mechanisms have been used to actively engage users, patients, carers and the public?

    —    Health communities have listened to patients/users and the public and recorded their views in improvement plans and activities.

    —    Actions resulting from patient and public feedback have informed plans and activities eg from Patient Surveys, PALS, Complaints, Compliments, User and Patient Engagement Groups, Focus Groups/Workshops, PEXIS etc (most Trusts in Trent have Patient Experience Learning groups that routinely collate and action feedback of this type).

    —    The plan reflects patient, user and public input. Where there is no input health communities need to justify not including patient, user and public views.

    —    Diversity is reflected, acknowledging the wide range of community needs, interests and perspectives, particularly those from minority communities and those with special needs or communication difficulties who are harder to engage.

    —    Expected benefits and outcomes that patients, users and the public should see as a result of the plan. ie an explanation of how plans will make a difference to, and improve services, health and well-being, and experiences for patients, users, carers and the public.

    —    Plans are "patient/user-centred" and grounded in the patient/user perspective on an ongoing basis eg patient and public involvement in monitoring and evaluation.

4.2  Plans should also evidence appropriate working in partnership with

    —    Local Authorities particularly Social Services.

    —    Local Strategic Partnerships.

    —    Local Authority Overview and Scrutiny Committees (OSC's).

    —    Patient and Public Involvement Forums.

    —    User, carer and citizen groups and voluntary sector organisations.

5.  Effective and Meaningful Involvement

  It is important to build upon existing relationships with patients, users, carers and the public, utilising groups and processes already in place within health communities rather than creating new mechanisms or activity.

  Legislative policy and practice emphasise the "independent" structures: Overview and Scrutiny Committee (OSCs), Patients Advice and Liason Services (PALS), Independent Complaints Advocacy Services (ICAS), Patient and Public Involvement (PPI) Forums and more recently Local Involvement Networks (LINks) which will formalise the existing relationships what the select committee should consider is how these can continue to add value to patient and public involvement within the NHS whilst retaining their independence. This has been a strength of the Patient and Public Involvement Forums who have mirrored the NHS structures and in the SE Coast area, had a productive relationship with the NHS organisations acting as critical friends able to work with us as well as independently.

5.1  The approach

  Under current Section 11 practice from Strengthening accountability all organisations should have in place robust PPI infrastructure, systems, methodology, and monitoring, this should include:

    —    PPI Operational Lead, Executive Lead and Board level PPI "champion".

    —    Ongoing PPI monitoring and evaluation of activity.

    —    PPI integrated into commissioning processes.

    —    PPI Policy/Strategy and Implementation Plan.

    —    Clear lines of accountability for PPI and strategic fit with organisational decision-making structure.

    —    PPI integrated into HR processes including induction, staff appraisal/KSF and objective setting, recruitment and selection .

    —    Ongoing PPI Staff and Board level workforce and leadership development programme.

    —    PPI impact assessment included in all Board papers relating to service change and improvement to meet Section 11 requirements.

    —    A range of approaches for engaging patients and the public across diverse communities.

    —    Clear mechanisms for organisational learning from user/public feedback—"Patient Experience Learning Groups".

    —    Mechanisms for feedback and responding to patients and the public.

    —    Annual PPI Report.

    —    Active and well resourced PALS service.

    —    Impact on changes to access to services for those most in need.

    —    User Expenses Policy and ring fenced resources.

    —    Good Practice Guidelines for PPI.

    —    Use/Public Engagement Steering Group.

5.2  Currently each NHS organisation has a Patient Advice and Liaison Service (PALS)

    —    PALS has an important role in organisations to:

    —    deliver and maintain a customer care/education/support function at the user/public interface;

    —    Provide valuable organisational intelligence on user/"customer"/public experiences, preferences and needs to inform:

      —  commissioning;

      —  continuous service improvement; and

      —  understanding market share/market management.

  PCT's need to ensure that any new arrangements for services meet national guidelines on complaints and PALS

  Organisations need to strengthen and develop the capacity of the PALS service ensuring the DH PALS Core Standards are met:

    —    PALS service is identifiable and accessible to the community served by the Trust/provider.

    —    PALS is seamless across health and social care.

    —    PALS is sensitive and provides a confidential service that meets individual needs.

    —    PALS has systems that make their findings known as part of routine monitoring in order to facilitate change.

    —    PALS enables people to access information about health and social care services/provisions and issues.

    —    PALS plays a key role in bringing about culture change in the NHS and social care, placing patients at the heart of service planning and delivery.

    —    PALS will actively seek the views of service users, carers and the public to ensure effective services.

  See Appendix PALS in focus.[60] *

6.  The Future of Public Engagement

  Recent guidance and policy has sought to create a system capable of delivering this vision and supporting the engagement of the Third sector to have a stronger voice in commissioning, needs assessment, policy development and delivery looking at the Third Sector Commissioning Task Force and the Stronger Local Voice policy recommendations aiming to:

    —    Build the capacity of the Third Sector to realise its full potential in the health and social care system and to benefit from greater plurality in Commissioning.

    —    Promote understanding among Commissioners of the Third Sector's contribution to strategic planning, needs assessment, health improvement, reducing health inequalities, (specifically equality, diversity and social inclusion related), service delivery and community and individual capacity building/empowerment.

    —    Collate and share effective practice in partnership work between statutory agencies and the Third Sector within the region including Local Strategic Partnerships, Local Authorities and social care.

    —    Facilitate and support systems reform, which builds on this learning.

  The newly published Local Government and Public Involvement in Health Bill which details the reform of the current arrangements for patient and public involvement in the provision of health and social care services has also contributed to a significant step change in the empowerment of citizens and greater engagement of local people in shaping public policies and services. Better joint working should provide the benefits of:

    —    Empowered citizens with an individual and collective responsibility for health.

    —    A better understanding of the health needs of "marginalised" groups.

    —    More responsive and inclusive services, leading to equality of provision, adherence to Compact principles.

    —    Greater choice for service users.

    —    Sustainable Third sector provision.

    —    Opportunities for joint commissioning optimised.

  A strengthened leadership role for local authorities to bring local services closer to communities, making them better coordinated and offering better value for money. Local Area Agreements (LAAs) and the accompanying duty to cooperate should further incentivise local agencies to work with their communities in a joined up way to improve services and the quality of life and work together to reduce long standing problems such as health inequalities.

  A new duty will require local authorities to inform, consult and involve local people in running local services; and councillors will be empowered to resolve issues of concern to the communities they represent (if necessary by requiring consideration by Overview and Scrutiny Committees).

  There will be significant social capital from the expected rise in engagement and empowerment of citizens and communities by local government. This should benefit service delivery and improved partnership working at the local level based upon local needs, plans and implementation.

  The Community Call for Action and the Overview and Scrutiny and governance reforms will provide additional mechanisms to enable a person or persons to require their local authority to consider an issue which is causing concern to the community. See Citizens Involved: Community Participation in Neighbourhood Renewal (2004) For evidence of how engagement can improve trust see ODPM, New Deal for Communities 2001-2005: An interim evaluation. Research Report 17, (2005).

  Patient and Public Forums will be replaced by the introduction of local involvement community networks (LINKs) which will be at the heart of the new arrangements to strengthen the voice of local people. Each authority with social services responsibilities will be appropriately funded to carry out a new statutory duty to make arrangements providing for the establishment of a LINk in its area. LINks are expected to build on the best of the work of the patient forums, creating a strengthened system of user involvement, which expands the opportunity for engagement.

    —    But will one size LINk suit all? Most communities have several constituent parts who may not work well together, and where large sectors may dominate.

    —    Will LINks be able to ensure a community led "health impact assessment" process?

  In summary, the new policies and guidance should give local people more influence over the services and decisions that affect their communities; provide effective and accountable strategic leadership; operate in a performance framework—for local authorities working alone or in partnership—which supports citizen empowerment and secures better outcomes for all; and leads local partnerships to provide better services for citizens. Moreover, measures will facilitate improved engagement and empowerment of users and communities and more responsive and efficient local services.

  This will bring a focus on:

    —    New relationships, systems, access routes and utilisation.

    —    New providers eg Voluntary Sector.

    —    The need for Identification and targeting-key of groups of potential patients.

    —    The need for organisations to understand their "market share".

    —    Engaging target groups of future patients by "market segment" eg high risk groups, young people, mental health, older people etc.

    —    Engaging with future patients through:

      —  Community outreach.

      —  Alliances with retail and other sectors.

      —  IT based solutions.

      —  "Well Person Plans".

      —  Creative use of media eg Digital TV, Text messaging.

    —    Engaging the public in non-NHS environments eg supermarkets, libraries etc.

    —    Links to and feedback from Local Strategic Partnerships, Voluntary and Community Sector Organisations and Local Authorities.

    —    Learning from public feedback. 

Circumstances in which wider public consultation (including under section 11 of the Health and Social Care Act 2001) should be carried out and the form it should take

1.  Creating an NHS Fit for the Future

  Like many Strategic Health Authorities across the country, NHS South East Coast together with the local health communities in Surrey and Sussex, is taking is fundamental look at how and where NHS services are provided in the area. This programme of service review for the NHS across Surrey and Sussex, (and, subsequently Kent and Medway) has been called Creating an NHS Fit for the Future and is expected to result in far-reaching proposals for change. The programme is reviewing the way services are provided in light of people's changing health needs in the 21st century to ensure that services: clinically sound, accessible and sustainable for the foreseeable future.

  Diagram based on presentation by Jenny de Ville, Department of Health expert panel member

  Surrey and Sussex comprises four local health communities, Surrey, East Sussex, West Sussex and Brighton and Hove. Primary Care Trusts in each of these areas have led on engagement and local planning and work programs, with the SHA providing support to ensure overall "fit" and coherence across the four communities. As part of this process, it has been important to engage with members of the public in each area, as well as clinicians, managers and partner organisations to discuss the underlying principles of the need for change and talk about what a sustainable service model might look like.

2.  Purpose

  To ensure a locally owned and driven review of services, that is supported by local people both within and outside of the NHS. The Fit for the Future engagement work is attempting to address an inherently complex challenge through a complementary set of interventions:

  Stakeholder discussions:   Introducing as wide a range of key players as possible into the discourse and its substantive challenges.

  Deliberative Events:   Enabling local citizens to appreciate and get to grips with the "trade-offs". (For further information see appendix 3.)

  Co-Design:   Facilitating leading "players" (patients/public; clinicians; managers) to review and test the evidence for change and move towards collaborative problem-solving: improvement through informed engagement.

  This is underpinned by ongoing Section 11 work by local health communities and is complemented by the ongoing communications, media, and public relations work, especially with local politicians, partner organisations and local campaigners.

3.  Approach

  The SHA has supported the local health communities through various planning programmes to ensure that there are active engagement strategies in operation by the PCTs and trusts throughout. These strategies and action plans offered stakeholders and the wider public a variety of opportunities to become involved in discussions around the drivers for change and their impact, the actual design of service change, and the subsequent proposals for service options in a formal consultation process.

  Where large scale change to key local services for the general population is proposed, then there must be full public consultation, preceded by a lengthy period of discussion, awareness raising and involvement with local stakeholders which will support the development of plans for change and eventual consultation on options.

  Through Fit for the Future we have learned that this is the only way to build an understanding of the reasons for change among stakeholders, and therefore, to engage people properly in a constructive debate about the options with shared responsibility. For details of the processes undertaken see appendix 3.

4.  Developing an Understanding Leading to a more Informed View and a Shift in the Public's Perception

  Public engagement has been fundamental to each stage of the Fit for the Future programme. Through engagement, it is possible to ensure that any proposed changes to health services will be responsive to the concerns and aspirations of patients, carers and the general public. Throughout the programme, participants have been asked to comment upon and help improve the communication and engagement process itself. Aware of it's the challenging aspects of the debate and the tensions of competing priorities; we consistently endeavour to improve the engagement process itself so as to improve the overall outcome.

Figure 1


5.  Communication and Engagement

  Through the development of thorough communications and engagement processes, the public's awareness of changes to service provision is increasing as more detailed information will be on hand, outlining what services are available. "Providing patients with more information will help increase their confidence in the system." (Member of public at deliberative event) An independent report of several events stated: "The general public need educating about which services they need and what is available to them, people need to know which service to go to for different kinds of treatment. Participants in both the deliberative events acknowledged that the media coverage of these changes so far has been very negative and we felt that (although we were not sure how) this needs to change. If these changes are going to be effective then they do rely on the public fully understanding them."

Feedback from people in Surrey and Sussex includes the following quotes and views expressed at some of the deliberative events:

    "Be careful to prepare the ground with local providers before moving services from hospitals to other hospitals or to the local GP service."

    "There is a need to consult local representatives, medical and non-medical."

    "Ensure the public has the full particulars."

    "Widen the scope of public consultation and ensure that it is perceived as being listened to, rather than a window dressing exercise."

    "Make it as simple as possible, publicise it as fully as possible."

    "Ensure the public are given full facts as well as the scenarios for change. It's hard to debate something that is undecided. Be very careful that you are not accused of "spinning" to reach the scenario that suits your agenda."

    "Acute care and emergency care are not the only priority. The money is to be taken into account but patient priority is to get the best care. We need clear information not PR talk."

    "Allow for full consultation with all affected user groups before any changes are implemented."

    "Communicate the fact that this is a change in the strategy of delivering care (an improvement) and not a reduction in care; if this is indeed the case!"

6.  Consultation

  All of the Fit for the Future work so far has been undertaken prior to the formal consultation process which is due to start this spring. This early work provides a firm basis for wider understanding despite the negative media and public campaigns. It is clear that people can appreciate that tough decisions need to be taken to ensure health services are safe, viable and affordable, freeing NHS time and resources to improve health prevention and health promotion and meet the ambitions of the white paper Our Health Our Care Our Say for a broader range of services based within the community and offered closer to people's homes.

  "Co-Design", "Deliberation", "Stakeholder Engagement" are all means of enabling local people and frontline staff to consider the reasons for reform in a safe space that allows fear and aspiration to be acknowledged and heard. In order to do this there are seven highly contingent sets of data variables to be addressed—and each is dynamic and contentious:

RhetoricalReflecting policy and the Reform programme and political interests
StrategicThe "drivers" of change and their implications
OperationalThe population ad service data
FinancialHistoric and projected
InfrastructureThe estate ad related systems/resources
Local-ContextualCritical additional factors: eg, transport, inequalities
And, crucially
Technical-ClinicalThe evidence-base for safe and sustainable practice

  Thus the assessment of the "trade-offs" between Clinical Safety, Accessibility, and Affordability that now forms the substance of most of the engagement work, will rely on the quality, contestability, and relevance (including meaning to diverse audiences) of the data used in the above process to affect a shift in "critical mass" of understanding.

7.  The Challenges Faced and Lessons Learned So Far From Creating an NHS Fit For The Future are

7.1  Key Challenges

Early Involvement vs "Vagueness"

  Whilst there are immense benefits to early engagement of stakeholders, including patients and the public in the development of proposals for change, this does create a period of uncertainty. Early involvement means engaging people in a discussion about the need for change and the challenges faced before there are plans or options on the table. However, this leads to a perception of the NHS being vague or worse withholding plans for discussion, and creating a vacuum filled by rumours which can fuel campaigns and media coverage ie a lack of understanding of what section 11 aims to achieve in terms of shared responsibility for designing new models of care whereas the reality was that the plans were slow to be finalised.

Stakeholder vs "Public Discussion"

  Early discussion focussed on stakeholders and representatives of patients and the public eg Patient and Public Involvement Forums, Health Overview and Scrutiny Committees, Voluntary and Community Sector. However, especially once media coverage creates anxiety about future plans for hospital services, there is an expectation from the public that effectively a "full public consultation" will be running throughout the period of discussion—it would be impossible to resource or maintain this degree of public involvement for a year or more. (See A1ppendix 4 for full scale of work undertaken prior to consultation)

Balancing the messages

  There is a complex balance between clinical safety and standards, patient needs and accessibility and affordability. It is extremely difficult to ensure these messages are heard and understood particularly in a challenged financial climate, any change is viewed as financially driven.

Clinical Leadership

  Clinical leadership is absolutely key to the engagement process, as stakeholders and the public have a high degree of trust in clinicians. However, a hostile reaction to proposals for change makes it very challenging for clinicians to provide public support, particularly if colleagues are not supportive.

Aligning discussion with development of proposals for change

  It is challenging to create a staged engagement process where the views expressed are constantly feeding into the development of plans for change in a meaningful way. The planning and engagement processes often run parallel with different pieces of work feeding into one another. Also the complexity of data can be a considerable challenge both in terms of language and density.

Involvement vs Reputation

  There is pressure on the NHS to, on the one hand, be very open about challenges and reasons why services need to change, and, on the other, to minimise negative coverage and maintain a positive public reputation. This can create tensions in terms of managing an effective engagement process.

Feedback loop

  There is need for a constant feedback through various modes to those involved in the planning process to feedback what has been said, and how it will be incorporated into the plans. (see Appendix 5 )

7.2  Lessons Learnt

    —  There must be an active engagement of key players and a constant liaison, ensuring that critics and campaigners are invited to work with the NHS and share responsibility for addressing the challenges public services face.

    —  A lot of time needs to be invested with stakeholders to develop understanding—this is time well spent, but it is impossible to do this with the whole of the general public. Deliberative events give a far more informed view than traditional public meetings, but the public prefer the public meetings! And those monitoring process may expect them?

    —  Close working with Health Overview and Select Committees from the earliest stage means greater clarity and congruence.

    —  Ensure clear and well communicated processes throughout so that people understand the different stages and the reasons for involvement before plans have been developed.

    —  Clarity of messages about change—should be simple, open and direct.

    —  Openness and transparency is fundamental.

    —  Identifying clinical spokes people and supporting them to present clinical issues and drivers for change to the public and stakeholders.

    —  Analysing and responding to concerns—create a constant feedback loop to demonstrate listening and the value of people's involvement. Also enables adjustment of the approach to involvement to meet needs and expectations.

8.   What are the circumstances in which consultation may not be required?

  Where full scale public consultation seems inappropriate but is currently sometimes expected, is in terms of the closure or relocation of small numbers of beds or of a specialist service. Small numbers of bed closures are often a part of the NHS adapting to changing needs and practices and whilst there should be discussion with key stakeholders around the reasons for such adjustments, full scale public consultation on such issues does not usually seem the best use of resources, or conducive to the NHS operating most effectively. Any engagement should be conducted as part of the requirements under section 11 guidance rather than full and formal consultation under section 7 guidlines.

  There are also difficulties where a change is proposed for very strong clinical safety reasons. Consultation then turns into a communications/information exercise where the public may rightly feel the decision is already made—because circumstances are calling for urgent action.

  This kind of situation can then damage genuine engagement and consultation processes where there is a real choice to be made and flexibility about the way forward which patients', partners and the wider public can influence. Maybe there should be a different name for an "informing" type "consultation" where urgent changes need to be made to differentiate from more interactive processes where there is mutuality in finding potential solutions.

Candy Morris

Chief Executive, South East Coast Strategic Health Authority

10 January 2007




  This process involved a structured method of seeking patients/public/carers views. The process adopted was to visit and contact consultants and specialist nurses who agreed to contact their patients, who gave their consent to pass on their contact details. They were then personally invited to join small discussion groups.

  Discussion groups were set up in four locations—Maidstone, Canterbury, Medway and Ashford. A total of 40 patients/carers attended these groups. An independent facilitator, engaged from the college of Health led these discussion groups. The purpose of these groups was to:

    —  Ask people what service they use.

    —  What it is like to be a patient?

    —  What is their experience of services in Kent and Medway?

    —  What is important to them in receiving a service?

    —  What are the important aspects of receiving a good service?

  The emerging themes from these discussion groups were:

    —  Waiting times for transport.

    —  Quicker and more accurate diagnosis.

    —  Reviewing times for outpatient appointments, eg late pm.

    —  Specialist nurses and outpatient clinics.

    —  Peer support patients "buddy" system.

    —  Dedicated central renal centre, including specialist nurses in OPD.

    —  More detailed information when first diagnosed in understandable language.

    —  Need for service in county before and after transplant surgery.

    —  Inadequate patient support services.

Developing an expert PPI group

  Volunteers were requested from these groups who would be involved in further re-design of services. They are experts from the point that they are experiencing first hand what it is like to live with chronic disease, eg renal failure. This personal experience makes them experts. They are prepared to share this experience to convey knowledge about living with this condition or illness to others and be involved in developing PPI in this particular review.

Patient expenses

  A policy and process has been established to reimburse patients/carers for travel expenses when attending discussion/involvement sessions and the agreement of a one-off additional reimbursement payment for specific work—eg presentations at conferences etc.

Working conference

  "Making it Happen" working conference on 19 May 2003 at the Hilton Hotel, Maidstone, was organised and attended by 95 stakeholders. The purpose of this conference was to:

    —  Bring together work from three of the review sub groups, namely commissioners, Clinicians and patient/public/carers.

    —  To share the achievements to date by identifying opportunities for redesign and approving these specialist services.

    —  To hear the views and experiences of patients/carers who use these services.

  The outcome of the conference helped clarify and produce the basis for future proposals for wider public consultation and scrutiny across the county's diverse community. The delegates who attended the conference represented:

    —  Two thirds NHS and local Authority Managers, NHS Clinicians and front line staff.

    —  One third patients/carers/public representatives.

Overview and Scrutiny Committee (OSC) Involvement

  The Health and Social Care Act 2001 makes statutory provision for local authorities with social services responsibilities to extend their scrutiny and overview functions to cover the NHS. The aims of the NHS overview and scrutiny are:

    —  The focus is on health improvement, bringing together the responsibility of local authorities to promote the social, environmental and economic well-being and the power to scrutinise local services provided and commissioned by the NHS.

    —  To address issues of health inequalities between different groups and working with NHS and other partners to develop a dialogue to achieve health improvement.

    —  NHS bodies have a duty to consult the local OSC on any proposals under consideration for any substantial development of the health service in the area.

  Two meetings were held with Kent County Council (KCC) and Medway OSC officers. The purpose of these were:

    —  To inform those present of the process of the review.

    —  To inform and understand the process and engagement of the OSC in both Kent and Medway.

    —  To share the consultation document and process.


  This reflected the discussions from the full range of stakeholders involved in this review. It identified and sought views on the key factors which had been established as contributing to what is considered to be best practice in providing a specialist service. These factors will decide the criteria which will be used to help PCTs and PPI assess the options of service models and arrive at a decision for future development and implementation.

  Stakeholders and patient/public/carers representatives were involved in writing and agreeing the context and content of the consultation document. This involvement included conference presentations, input from the discussion group sessions and a half day workshop on 9 June when 18 individuals attended to scrutinize and adjust the draft document. Those 18 attending represented one third NHS staff and two thirds patient/public representatives.

  Finally, the consultation document was signed off by the Review Project Team and four patient/public representatives after further input and comments had been received from steering Group members.

  6.  Subsequently those patients and carers involved in the review have been part of the implementation team and were recently present at the opening of the Medway Centre of excellence. They were thoroughly heartened to see other patients receive the treatment they require within the best facilities and with a responsive service which they had helped set up.




  This self-assessment framework aims to draw together the expectations, requirements and good practice around PPI into one place. By self-assessing against this framework, organisations will be able to:

    —  Assess progress in developing PPI—identifying areas of strength and areas which require further development.

    —  Identify risks in not meeting key requirements such as the Section 11 duty to involve and consult.

    —  Compare progress with other organisations and identify sources of good practice elsewhere.

    —  Provide evidence to inform the organisation's declaration against the health & social care standards, to inform the Strategic Health Authority (and if appropriate the Department of Health), and to inform independent scrutiny organisations such as Patient Forums and Overview & Scrutiny Committees.


    —  The Board.

    —  The lead executive & non-executive directors.

    —  The PPI, clinical governance or other group overseeing PPI within the organisation.

    —  Operational lead(s) for PPI.

    —  Patient Forum(s).

    —  Strategic Health Authority.

  This framework is based on key guidance documents and national frameworks (listed below), and has drawn on frameworks used in other Strategic Health Authorities. Its development has been overseen by a small working group of PPI operational leads from NHS organisations (who also piloted it), and has input from the wider network of PPI leads and other audiences.


    —  Strengthening Accountability—Policy and Practice Guidance.

    —  National Standards, Local Action—The new health and social care standards.

    —  Choice, Responsiveness and Equity.

    —  PALS National Core Standards.

    —  NATPaCT Competency Framework, Section 7—Community Patient and Public Involvement.

    —  Performance Improvement Framework for PPI (SHA PPI leads/DH, 2003).


  This is a self-assessment framework and there will therefore inevitably be an element of subjectivity. It is helpful for the self-assessment to be undertaken by a small group (eg operational lead, PPI Forum representative, lead NED, lead Director, staff member) to bring different perspectives and to form a consensus. It will certainly be necessary to consult with colleagues when completing certain parts of the self-assessment. It is important to be as honest as possible in order to get the maximum benefit out of using the framework.


  The framework is made up of 24 competencies, within which there are a series of objectives and actions which contribute to achieving that competency. There is a line to complete for each action as follows:
Objective Action Position statement EvidenceRed AmberGreen
1Statement describing an overall objective


1.1A specific action which contributes to achieving the objective and competency Your brief statement of where you are against this action. Eg fully achieved, requires xx to complete, not achieved—plan in place etc Evidence which supports your position statement eg reference to an action plan, a system, process or policy. Afinal rating

*(Xx)  Cross references against the relevant critera for assessing the Healthcare Commission core standards in The annual health check. Where appropriate the developmental standard is also identified in this way. The primary core standard for PPI is C17 and cuts across the entire framework, so has not been identified separately.

The final rating of red, amber, green should take into account the position statement and the evidence—an action cannot be green if there is no evidence to support this. Definitions of red, amber and green are:

Red—Not achieved and limited progress made

Green—Fully achieved with supporting evidence

Amber—Not fully achieved, but good progress being made


Lead responsible for completion: Name:---------------

Others involved in carrying out the assessment:

------------------------Role: ---------------------------------
1.Name.-------------------------------------------------------- Role:----------------------------------------------------------
2.Name. -------------------------------------------------------- Role: ----------------------------------------------------------
3.Name. -------------------------------------------------------- Role: ----------------------------------------------------------
4.Name. -------------------------------------------------------- Role: ----------------------------------------------------------
5.Name. -------------------------------------------------------- Role: ----------------------------------------------------------

How was the assessment carried out?

How has the assessment been communicated (who has it been shared with and how?)


Section A: Patient & Public Involvement Strategy & Action Plan
Objective Action Position statement EvidenceRed AmberGreen
A1Carry out a baseline assessment of PPI activity across the organisation (ref: strengthening acc) 1.1A comprehensive baseline assessment has been carried out, identifying strengths, weaknesses and development needs.
A2Develop a clear PPI strategy and action plan, agreed by the Board (ref: strengthening acc) 2.1A PPI strategy and action plan have been produced with the involvement of key stakeholders and has been agreed by the Board.

2.2 A reporting mechanism is in place to monitor progress against the action plan.

2.3 The PPI strategy demonstrates links to the local planning and policy process (incl LDP) and there is evidence that patients and the public are involved in the organisations internal planning processes.

2.4 The PPI strategy and actions are publicised to staff and public.
A3Develop an infrastructure to support the PPI strategy 3.1There are designated NED, executive director and operational leads for PPI.

3.2 There is a designated group or committee that oversees PPI strategy and activity within the organisation.

3.3 Progress in achieving PPI is evaluated annually and reported internally and externally.

Section B: Supporting Patient & Public Involvement Activity & Integration
Objective Action Position statement EvidenceRed AmberGreen
B1Support staff to undertake PPI activity 1.1PPI is included in staff job descriptions and appraisal processes.

1.2 PPI is included in staff induction. Advice and training are available to support staff on PPI.

1.3 Examples of good practice are shared across the organisation
B2Support patient, public and voluntary sector representatives to participate in PPI activity 2.1There is clear information for patients and public on opportunities to get involved in improving services.

2.2 Patient/public representatives are offered training and support to help them participate fully.

2.3 There is an agreed policy on reimbursement of expenses that clarifies terms of payment for time if appropriate.

2.4 A wide range of methods are used to involve patients and public.

2.5 There are specific measures to involve harder to reach groups.
B3Learn from good practice and experience elsewhere 3.1Staff involved in PPI, PALS and related areas participate in local and SHA wide networks.

Section C: Systems for Patient Feedback
Objective Action Position statement EvidenceRed AmberGreen
C1Improve the 5 key dimensions of the patient experience through; learning from patient survey results developing action plans, acting on any concerns to improve service delivery and the patient experience.

*(C14c)  *(D8)




A patient survey is carried out annually and the results of the survey are made public and shared with staff and PPI forum.

Areas previously identified for action have shown improvements.

An action plan is produced with involvement of staff and stakeholders and has been shared with Board, who also monitor progress.

C2Provide an accessible PALS service which can resolve patients' ques-tions and problems, provide information and receive feedback

(ref national core standards)

*(C13b)  *(C14a)





A fully operational PALS is in place, accessible and publicised across the community.

The PALS has been assessed against the national standards.

There is a development plan for PALS based on the national standards.

Staff are aware and trained in the role of PALS and their own role in overall PALS approach.

C3Provide a well-publicised, non-discriminatory complaints process.

*(C14b)  *(C14a)

3.1There is a process for formal complaints and information is available to the public/patients.
C4Provide opportunities for feedback from patients, carers and others and manage this feedback systematically, analysing it across the 5 domains of patient experience.




There are clear ways for patients, carers and others to provide feedback.

Feedback from PALS, PPIF, complaints, surveys and other sources is drawn together and themes and issues identified.

Section D: Partnership Working
Objective Action Position statement EvidenceRed AmberGreen
D1Demonstrate a strategic approach to planning, PPI and policy through partnership working




There is evidence of strong partnership working with local authorities, voluntary and community sector and other NHS through LSPs, local compacts and networks to develop patient/carer involvement.

The organisation has been involved in the development of, and has signed up to its local compact(s).

D2Demonstrate positive working relationships with independent PPI structures 2.1



There are agreed working arrangements with PPI Forum(s) and evidence of a good working relationship

Liaison arrangements have been agreed with HOSC(s) and evidence of a good working relationship.

There are procedures in place to consult with HOSCs on any proposal for potentially significant service variation. There is evidence of consultation with HOSCs.

D3Promote recognition of and support for carers needs, and make arrangements to involve carers. 3.1


There are links with carers groups and networks. Carers are supported to be involved in all aspects of PPI.

The organisation contributes to a local carers strategy.

Section E: Patient Information

Objective Action Position statement EvidenceRed AmberGreen
E1Provide a range of information to patients to including information to support choice and self-care (ref info for choice and info leaflet guidance on DH website)

*(D9a)  *(D9b)  *(C16)







There is evidence of a range of information in place, including what to expect during treatment, aftercare, and from services and health promotion.

There are protocols in place for style, content, format and distribution.

Information is made available to support choice.

Information is available to support self-care and prevention.

Information is available in a range of formats and languages.

Patients/public and staff are involved in producing and reviewing information

E2Provide patients with a copy of letters sent between clinicians about their individual care (ref copying letters to patients info, guidance and toolkit) 2.1



A policy for "copying letters to patients" has been produced and agreed.

There is an action plan for implementing the policy and progress/compliance is monitored.

The organisation is compliant with the policy.

E3PPI links closely with communications strategy 3.1


The organisation has a proactive communications strategy with links to PPI.

Interpreting services are available to all patients.

Section F: Ensuring PPI has an impact
Objective Action Position statement EvidenceRed AmberGreen
F1Ensure patient feedback influences service planning and development

*(D8)  *(C14c)




There is evidence that issues and trends identified from PALS, complaints and other sources of feedback have consistently been acted on.

There is evidence of action taken as a result of patient survey findings and that the survey findings have improved the patient experience and influenced PPI activity.

There is evidence of the organisation responding to reviews from PPIFs, HOSCs and other groups.

F2Ensure that the adequacy of PPI is challenged and assured at Board level 2.1All Board members are familiar with the key PPI requirements and are equipped with the right questions to ask.

2.2 There is a section on Board papers which details how PPI has informed the decision.
F3Measure performance from a patient/carer perspective

*(D8)  *(C14c)

3.1Data collected about patient/carer experience is used to inform service planning and delivery.
F4Ensure staff can action patient feedback 4.1Staff have clear routes for communicating patient feedback and know what happens as a result.

Section G: PCT—specific section
Objective Action Position statement EvidenceRed AmberGreen
G1Ensure commissioning processes take into account the needs and preferences of the local community, and support choice and PPI 1.1


There is patient/public involvement in commissioning decisions

Contracts and SLAs make reference to PPI and patient experience requirements.

G2Ensure there are opportunities for PPI in the services provided by independent contractors 2.1



All GP practices have PPI processes eg a patient participation group.

Dental, ophthalmic and pharmaceutical practitioners are encouraged and expected to take a PPI approach.

There is an identified lead for PPI on the PEC.

G3Ensure that the whole local community has information about local health services 3.1


"Your guide to local health services" is produced annually and distributed to every home. It is available in a variety of formats and languages.

"Your guide" contains details of PPI activity and how patients/carer/public feedback has led to service improvements.

G4Support self-management, self-care and prevention

*(D9a)  *(D10)




There are a range of activities in place to support SM, SC and prevention, either directly provided or commissioned

Patients are provided with the opportunity to contribute to the planning of their care.

Initiatives are run in conjunction with the voluntary sector to maximise self-management, self-care and prevention

Section Key weaknesses Actions neededHow to take forward RedAmber Green
APPI strategy and action plan enter numberhere
BSupporting PPI activity and integration
CSystems for patient feedback
DPartnership working
EPatient information
FEnsuring PPI has an impact



  From May 2005 until July 2006 there have been a succession of planning initiatives in Surrey and Sussex: S4 Sustainable services, Strategic Work Programme and "settings of care" which were designed to provide a vision of what a sustainable healthcare system might look like. This was informed by meetings with both the HOSCs and the PPI Forums.


  A reference panel of all four HOSC Chairs was established by the SHA to facilitate regular liaison and involvement. In addition, further sessions were arranged with individual HOSCs to cover both Commissioning a Patient-Led NHS consultation and updates on the strategic work programme.


  A reference panel of PPI Forum members was established to facilitate high level PPI input to the issues being taken forward through the strategic work programme. A flyer was sent to all 100+ Patient and Public Involvement Forum members across Surrey and Sussex via their Forum Support Organisations asking interested members to send in their details. 13 members agreed to join the panel, of which between five and 10 attended each meeting.

  A large event was held for all 100+ PPI Forum members across Surrey and Sussex with a keynote presentation from Simon Williams updating PPI Forums about the strategic work programmes, followed by questions and discussion. CPPIH and FSO worked in partnership and answered questions informing them of what's going on. This enabled them to test out McKinsey's findings providing insight into potential issues that the wider patient and publics might have. The event itself also provided forum members with personal contacts responsible for the Fit for the Future programme.

  At the April meeting of the reference panel, members agreed to disband the panel as they would now be focusing on continuing their involvement at a local health community level. To continue PPIF representation at the strategic level, two members of the panel were nominated to join the Surrey and Sussex wide Programme Board as patient representatives, and two joined the communication and engagement steering group. This ensures community leadership is influencing the planning and engagement processes throughout the programme.


  MPs and local authorities were informed and engaged in the ongoing Strategic Work Programme through regular briefing meetings with the SHA Chief Executive and Chair. In addition, specific meetings were organised with Directors of Social Services, and the SHA CE took the opportunity to inform colleagues of the programme at scheduled meetings of GOSE and other LA partnerships. This has been an ongoing feature of the work led by PCT CE and programme leads who have continued to meet and make regular reports on progress and planning to stakeholders throughout the Fit for the Future programme.


  The above document was produced by the SHA in March 2006. It summarised the findings of the S4 review and how these were developing into the Strategic Work Programme. The document was distributed to key stakeholders (MPs, HOSCs, local authorities, PPI Forums, clinical networks and NHS managers and clinicians) and their feedback was invited. Regular written feedback to the public and the wider stakeholders has also been a feature of the review detailing published documents from this process. (See attached newsletter)


  In May 2006 a discussion document titled "Creating an NHS Fit for the Future" was published by the Surrey and Sussex NHS. This outlined the drivers for changing health services, the proposed direction of travel at a high level and the identified priority areas for each local health community. It invited feedback on the proposed vision for health services, with a freepost address and response form for comments.

  This document was distributed widely to stakeholders:
Local authoritiesPPI Forums, FSOs and CPPIH
Patient and carer groupsVoluntary organisations
Local strategic partnershipsLibraries

  It was also published on the newly launched Fit for the Future website, with links from the websites of individual NHS organisations. An on-line feedback form was available. [61]

  A total of 6,226 people responded to the discussion, 3,651 signed a petition or campaign letter to protest against the perceived closure or downgrading of a local hospital and 2,575 wrote in with a more detailed response to the issues raised in the discussion document. Of these responses, the majority (81%) were about concerns at the possible closure of St Richard's Hospital, and most were sent by members of the public (87%).

  Each local health community designed a programme of discussion activities to engage local stakeholders and patient/carer representatives in debate about the issues raised by the discussion document. Each person who had phoned, emailed or written in commenting on the discussion document was responded to by either SHA or PCT staff and subsequently sent an update via a Newspaper printed September 2006.


East Sussex LHC

  Three major stakeholder events were held to discuss the issues outlined in "Creating an NHS Fit for the Future".

  An Out Reach Programme meant that the two PCT's worked hard to attend over 70 local meetings of community/voluntary groups, local authorities, local strategic partnerships and NHS organisations/staff groups to ensure they knew what progress had been made and had an opportunity to inform the thinking. This included meetings of local PPI Forums and the East Sussex HOSC and meetings with local MPs.

West Sussex LHC

  Two major stakeholder events were held to discuss the issues outlined in "Creating an NHS Fit for the Future", plus a smaller event linked to a regular meeting of the West Sussex Public Partnership Forum.

  In addition, the local health community team attended a wide range (around 30) local voluntary/community groups, local authority meetings and local strategic partnerships. This included meetings of PPI Forums and the West Sussex HOSC and meetings with local MPs.

Surrey LHC

  Four major stakeholder events were organised to discuss the issues raised in "Creating an NHS Fit for the Future".

  In addition the local team attended a wide range (around 30) of local voluntary/community groups, local authority meetings and local strategic partnerships. These included meetings with PPIFs, the Surrey HOSC and local MPs.

Brighton and Hove LHC

  Brighton and Hove LHC focused on using existing community engagement mechanisms to discuss "Fit for the Future" issues with local stakeholders. These mechanisms are well developed following previous consultation on "Best Care, Best Place". The local team attended a range of local community/voluntary groups and local authority meetings, including meetings with PPI Forums and the Brighton and Hove HOSC. They also set up small focus groups as a means for discussing any issues raised by the programme for local people.


  Although stakeholder involvement was led locally, the SHA continued to liaise with key stakeholders such as MPs and HOSCs.

  In order to provide further independent and expert guidance to the involvement process, the SHA also established a "Patient and Public Involvement (PPI) Expert Panel". This consisted of representatives from national organisations and people with recognised expertise in the field of service reconfiguration, and representatives from local HOSCs and PPIFs were also invited to join. The membership from national organisations is as follows:
Prof Bob Sang (Chair)PPI advisor to Fit for the Future
Tim GillingCentre for Public Scrutiny
Jenny DevilleDH, author of "Strengthening Accountability" and PPI lead, South East London SHA
Pippa HagueDH PPI team and PPI lead, East of England SHA
Chris Howgrave-GrahamAdvisor to DH Reconfiguring Hospitals programme
Martin HoughtonIndependent Reconfiguration Panel

  The purpose of the panel was to provide an expert sounding board for engagement plans and access to national best practice and policy on engagement involvement consultation and its possible repercussions. Programme leads also attended the Future Health Network to learn from their peers and best practice in large scale service reconfigurations in Bristol and Manchester etc.


  All the feedback and correspondence received during the initial discussion phase was logged centrally by the SHA and passed to independent analysts TwoCan Associates who have produced a report summarising the key themes and issues raised by stakeholders.


  This stage moved the discussion on from drivers for change and a high level vision into the specifics of what this would mean in terms of service change in each local health community. During this stage stakeholders are being engaged in discussion about the potential scenarios for the configuration of acute care as well as consideration of what community based services would be needed to support this.

Co-design—August to January 2007

  During August each local health community held a "co-design" workshop facilitated by the PPI advisor to Fit for the Future, Prof Bob Sang. These workshops brought together small groups (c20) key stakeholders such as PPIFs, voluntary groups, patient representatives (including "campaigners") with clinicians and managers to look in more detail at the potential change scenarios emerging from work on local sustainability plans. The ground rules for co-design require everyone to listen respectfully, and to contest the evidence from the perspective of improvement and a person-centred, service-focused rather than building- focused, value base.

  Thus the challenge facing the local health communities can be described as an "effectiveness improvement cycle".

  Co-Design is not new. It has deep roots in the work of the Tavistock Institute (Lewin, Emery, et al), and a strong evidence base, linked to Action Research and Action Learning (Revans, Bessant, McGIll, etc). It is a method for addressing tough "trade-offs". Locally, the Kent and Medway Specialist Services Review and the Central Sussex Partnership Programme (CSPP) both achieved a constructive, consensual resolution of initially contentious service change proposals. The four health communities have had regular iterations of the co-design events to take people's collective thinking forward through the need for change, the potential areas of what within each community, and latterly what those scenarios might look like in terms of service changes and proposals which require a wider consultation.

Deliberative events—September

  As part of this engagement process four deliberative events were held, one in each Local Health Community area. Vision Twentyone[62], a company specialising in consultation and public involvement was commissioned to recruit, design, manage and facilitate these events. A representative sample of members of the public from each area, who had not previously played and part in the discussions were recruited to participate in one day workshops where they listened to presentations from the perspective of clinicians, managers and patients. Having heard the case for change they had the opportunity to deliberate on the issues in small groups.

  The aims of the events were as follows:

    —  To invite a local sample of individuals to participate in a discussion about how sustainable healthcare services could be provided for their community.

    —  To give participants an opportunity to talk about issues that affect their lives and to tell the NHS in Surrey and Sussex how they think things can be changed for the better.

    —  To create an "open—two way dialogue"' explaining the constraints of resources, clinical standards and modern medical practice which will need to be taken into account when decisions about these changes are made.

Improving understanding and raising awareness about the need for change

  Having heard the presentations (and worked through deliberative exercises in small groups) the majority of participants felt that they understood the need for change and were in favour of a community focused model of health services with specialist centres for critical care remaining at fewer hospital sites.

  One participant noted: "From what we have heard through the presentations, if the services promised to be delivered in doctors' surgeries and Walk-in Centres are actually implemented the benefits will be great."

  When asked participants were asked "why" they took part in the event, reasons given were because: they wanted to find out what might happen to local hospitals. Another participant noted that following the telephone survey, they were interested in seeing or hearing "both sides". The perceived downgrade of services and issues around cleanliness are also points that encouraged people to take part. They wanted to take part in the debate and contribute to the discussion around the future of the NHS. Ultimately they were interested in having their say. Above all: "the health service is vital, even more so as one grows older."

  There continues to be a gap in understanding between those who have worked with the health service to improve services, and those who learn about the NHS through media coverage and the rumour mill generated by NHS staff.

60   * Not printed here. Back

61   A readers panel informed the content of the website and all materials produced to ensure accessibility. Back

62   The use of independent contractors has been used to ensure a robust quality assurance is present throughout, and reassure participants that no bias can affect the outcome of any part of the discussions or subsequent plans. Back

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