Chapter 9. Accountability and measuring performance.

9.0 Accountability.

9.1 Being accountable can mean different things to different people. In the context of LINks, we think of accountability as the process for explaining or justifying actions and decisions, and demonstrating the progress of work that the LINk has undertaken in relation to its roles. No national system of accountability has been put in place, as this should be determined locally. LINks are responsible for deciding their priorities and actions, and they should be able to account for those actions, decisions and achievements to local people and organisations.
9.2 Accountability needs to be demonstrated:

by the host to the local authority
by the host to the LINk
by the LINk to local people and organisations
by LINks to the Secretary of State for Health.
9.3 Each LINk therefore needs to be clear about what it is accountable for and how it will account for its actions. This is not a difficult task if the LINk considers accountability in conjunction with the following:

Transparency: ensuring that it is open about its methods, processes and performance.
Liability: taking into account the consequences of the actions, decisions and views that it takes and communicates.
Responsibility: making sure that it follows the methods of working that have been agreed by the LINk as a whole, including codes of conduct for participants and working groups.
Responsiveness: listening to and involving interested individuals and organisations, and responding to their information and priorities based on evidence of need.
9.4 Host accountability to the local authority:
This should focus on performance monitoring arrangements. The host will need to account for how it fulfils its contract, including how the money that it receives is spent, and how it engages with organisations and individuals within the community.
9.5 Host accountability to the LINk
It is important that the host and the LINk are clear about which roles the host is accountable for in relation to the LINk. For example, in the Getting Ready for LINks regional workshops, it was identified that the host should be accountable for demonstrating that there are robust ways of ensuring that issues that emerge from LINk participants and contributors are managed effectively. The host and the LINk will need to clarify expectations about accountability early on in their relationship to enable the host to undertake, for example, any data collection that the LINk might ask for.
9.6 LINk accountability to the community
A number of different methods of accountability are used by voluntary and community organisations, public bodies and private companies, including:

production and dissemination of an annual report, explaining how the roles have been undertaken, how broad, diverse and equitable involvement has been maintained, and how outcomes have been achieved

publication of materials using different methods to suit a diverse audience, for example a website, text messaging, outreach presentations, or a proactive relationship with the local media

holding meetings or events in public where the LINk presents its achievements, is open to questions and debate, and demonstrates its inclusivity.
9.7 An established LINk that is confident and influential is likely to use these methods and collect annual feedback from stakeholders and partners to identify how it is perceived by groups and organisations within the community. This is often called ‘360-degree feedback’. The process might include asking for feedback from commissioners and providers of care services, as well as from a selection of groups, organisations and individuals within the locality. The collated feedback can be incorporated into the annual report and shared with LINk members and participants as well as with stakeholders, enabling the LINk to demonstrate transparency and accountability.
9.8 LINk accountability to the Secretary of State for Health and Parliament LINks will be required to produce an annual report with the support of the host organisation. This report will be a method of accounting to the Secretary of State and ultimately to Parliament.
9.9 It will be important for the LINk to develop an accountability process that enables people and organisations who are not engaged in its work to ask questions, challenge priorities and be given an opportunity to shape the way in which it works for the future.
9.10 Measuring performance
9.11 In addition to being accountable to local communities, LINks need to be able to measure and demonstrate how they have performed to the local communities, to the host, to the local authority and, through this local approach, to the Government. We believe a LINk will be a success if it can demonstrate the following achievements:

People know of its existence and what its role is, and perceive it as a credible local organisation.

People are able to gain access to it through the avenues and opportunities that suit them (within a reasonable cost).

People know what it is doing and why, and are able to comment on its work.

It has reached out widely and deeply into the community and can show evidence of the effectiveness of this.

It works in inclusive and non-discriminatory ways and is able to show a diverse range of participation in its activities.

It knows what people’s needs are for health and social care services – it should have an evidence base which encompasses views from an appropriate section of the local population.

It has an evidence base of how people in its area perceive the health and social care services they have received.

It has identified areas in which health and social care services can be improved in the eyes of the public or users of services – and has made recommendations to those bodies responsible for those services.

It has established constructive and open relationships with health and social care commissioners and providers.

It has a focus on partnership, outreach, networking, relationship-building and making common cause.

It has a constructive and open relationship with its host organisation.

It has a constructive and open relationship with relevant overview and scrutiny committees, with health and social care regulators, with strategic health authorities and with local voluntary and community sector organisations.

It is rated by key local organisations as a credible partner, adding value and providing effective insight.

It is able to account (via the host) for the money that has been made available to it to fulfil its activities.

It can identify the impact the involvement of the LINk and recommendations it has made have had on services.
9.12 It is important that these performance indicators focus on the qualitative aspects, such as quality of interaction, the building of relationships, influence and achievements, as well as quantitative indicators such as the number of people reached and reports made. Outcomes and indicators will need to be negotiated locally to ensure that they are appropriate to local circumstances and informed by the knowledge and experience of the local partners.
9.13 It will be up to local authorities to decide, in conjunction with local people, stakeholders and prospective host organisations, what the appropriate indicators are to demonstrate that a host organisation has enabled, supported and guided the LINk successfully in its activities.
9.14 To support both LINks and host organisations to undertake their roles in relation to accountability and performance management, we will be developing national quality benchmarks for LINks, including tools for localised performance management, peer review and recognisable success criteria for key areas, including the performance of hosts. This will be published when Royal Assent has been received for the Local Government and Public Involvement in Health Bill.

For more first class information about LINks and continually expanding categories of topics (i.e. Diabetes, Mental Health) go to the Patient and Public Involvement (PPI) Library managed by the Kings Fund Information and Library Service.
The other extracts on these pages constitute explanations of what LINks are intended to be, and why. They don't flow off the page but they're worth reading.
To go straight to an explanation of the legal foundation click here
For an abridged version of the Government paper of August 2007, go to Getting Ready for LINks - Planning Your Local Involvement Network

Extracts from “A Stronger Local Voice”
(DoH July 2006)

Foreword
By Rosie Winterton,
Minister of State for Health Services

If we are to create a truly patient-led service, centred around the needs of both individuals and communities, it is essential that we create a stronger voice for patients, service users and citizens at all levels of the health and social care system. With this document, we set out our plans to achieve this.
It is clear from the messages we heard during the consultation leading up to the publication of the White Paper Our health, our care, our say: a new direction for community services and from listening to people during the review of patient and public involvement that more people want to have a greater say about their local services. The White Paper aims to create health and social care services that are user-centred, responsive, flexible, open to challenge, accountable to communities and constantly improving.
We are committed to empowering citizens to give them more confidence and more opportunities to influence public services in ways that are relevant and meaningful to them, and in ways that will make a real difference to services. This is part of a wider Government
commitment to revitalise community empowerment and engagement across the broad range of public services that will be set out in more detail in the forthcoming White Paper on local government and communities. We want people to become active partners in their healthcare and wish to create a system where people are no longer passive recipients of NHS and social care services. People are now better informed about making healthy choices and better equipped to make decisions about their healthcare, so it is essential that we use people’s knowledge and experience to improve the services they use.
There are excellent examples of how citizens and service users are already influencing their local services. We recognise the huge amount of time, skill and energy that people involved in patient forums, patient participation groups and other networks have put into influencing and improving their local services. Now we want to go further for all patients, and to reach out to those people whose needs are the greatest, to people who do not normally get involved and
to those who find it hard to give their views.
There are five elements of the new arrangements: local involvement networks; overview and scrutiny committees; more explicit duties on providers and commissioners of services to involve and consult; a stronger national voice; and a stronger voice in regulation. The new arrangements will build on the work of patient forums and overview and scrutiny committees, and the engagement activities of NHS and social care organisations. The arrangements will enable genuine involvement in a much wider range of ways, bring real accountability at the commissioning level, and enable a broad spectrum of people to influence how their local services are designed and delivered.
I have spent a great deal of time with many people who are involved in these activities and have seen their energy and expertise at close hand. I am full of admiration for their work and as a result of what I have seen am convinced that we must support their input and encourage still more people to get involved in ways that suit them.
I appreciate the time many people have taken to feed their ideas into the review process and I am grateful to Harry Cayton, National Director for Patients and the Public at the Department of Health, Ed Mayo, Chief Executive of the National Consumer Council and the members of
the expert panel for their consideration of all the evidence and the recommendations they have made.
Our health services belong to all of us and we all have the right to get involved. By doing so we can make our services better for ourselves and our communities. I therefore hope you will welcome these proposals and I am keen to hear your views.

Introduction
By Harry Cayton,
National Director for Patients and the Public

The health and social care system exists for the benefit of people who need care, so it is essential that we put the needs and preferences of patients and service users at the centre of all we do. This document sets out our plans for widening and strengthening patient, user and citizen engagement in health and social care. It takes into account the recommendations of the expert panel that concluded the review of patient and public involvement and describes the new arrangements.
Many people have contributed to the proposals outlined in this document; people who took part in consultation events, patient organisations and community groups, members of patient forums and a range of representative organisations in health and social care. The new arrangements, built on their evidence and advice, are based on some important principles: independence and engagement, accountability and transparency. We wish to create flexible ways to engage people which are appropriate to local communities and locally resourced and managed.
Because we want the transition to the new arrangements to be as smooth as possible, we are seeking your views on some points relating to how the new systems should be developed.
I should like to acknowledge the work of the Commission for Patient and Public Involvement in Health, chaired by Sharon Grant and the patient forums. Thousands of individuals have stayed committed as active citizens through a difficult period of change. I hope they will
continue to play a part in shaping and improving health and social care.
I also thank the members of the expert panel and all who contributed to our discussions and therefore to these proposals.

Summary
This document sets out a framework for creating a stronger local voice in the development of health and social care services. The arrangements for involving patients and the public need to be updated to support the significant changes being made to the health and social care systems. The new arrangements aim to build on the excellent work of patient forums and the vast array of involvement activities of individuals, groups and networks and will strengthen and widen the way in which people’s views are gathered, listened to and taken account of when health and social care services are planned, developed and commissioned. They will allow for flexible, locally determined ways of working that meet the needs and preferences of local people and create capacity for an independent voice at a local level in commissioning health and care services, assessing the quality of services provided and in the regulation of the health and social care system.

The Commission for Patient and Public Involvement in Health (CPPIH) and patient forums will be abolished and local involvement networks (LINks) will be established for every local authority area with social services responsibilities. These networks will be able to provide flexible ways for communities to engage with health and social care organisations in ways that best suit the communities and the people in them. They will build on the best work of patient forums by creating a strengthened system of user involvement and will promote public accountability in health and social care through open and transparent communication with commissioners and providers.

LINks will establish a specific relationship with overview and scrutiny committees (OSCs) and have the power to refer matters to the OSCs.

OSCs will be encouraged to focus their attention on the work of commissioners of health and social care services and are ideally placed to ask commissioners about the decisions they have made.

The duties to involve and consult will be simplified and strengthened. There will be a new duty placed on commissioners to respond to what patients and the public have said.

Work is being undertaken to explore ways of creating a stronger voice for patients, service users and members of the public at a national level.

There will be a stronger user voice in regulation and in the regulation of involvement.

We will legislate on these new arrangements when parliamentary time allows.

A stronger local voice

The current arrangements and what will change

Currently there is a patient forum for every NHS trust (including foundation trusts) andprimary care trust (PCT). They have a range of functions including monitoring and reviewing the health service. We plan to build on the role of patient forums and intheir place will create LINks, which will cover an area rather than be tied to a specific organisation.

The CPPIH was set up to support and manage patient forums. The decision to abolish the CPPIH was made by the Arm’s Length Body Review in 2004.

Local authority OSCs review and scrutinise matters relating to the health service. NHS organisations must consult them on substantial variations and developments to health services. OSCs will be encouraged to focus their attention on the work of commissioners to make sure they are commissioning services that reflect the health needs of local populations and that they are reflecting public priorities in the communities.

Section 11 of the Health and Social Care Act 2001 places a duty on NHS trusts and PCTs to make arrangements to involve and consult patients and the public in the planning and development of health services and in how the services operate. The requirements of section 11 will be made more explicit and a new duty to respond will be placed oncommissioners.

The Independent Complaints Advocacy Service (ICAS) assists individuals who wish to make a complaint about health services. No changes will be made to ICAS.

The Patient Advice and Liaison Service (PALS) helps patients and their carers address concerns relating to their care and treatment and tries to sort out problems quickly by liaising with staff, managers and other organisations. No changes will be made to PALS.

Why a stronger local voice is needed

In many parts of the country, local people – young and old – are involved in planning, developing and making decisions about their health and social care services, and their viewsare changing how services are delivered.

This document:

describes what we are going to do to strengthen and broaden user and public involvement in the commissioning and provision of services; and

asks for your ideas on a number of points to help us get it right.

There are some excellent examples to illustrate how powerful the views of local people can be. Although many examples of good practice can be found across the NHS, there is inconsistency, and the NHS still has much to learn from the more localised, social care approach to involvement. The trend in social care is to give as much power as possible to service users to design, purchase and manage their own services. This is supported through direct payments and individualised budgets.
In many NHS trusts and PCTs there continues to be a lack of meaningful engagement when services are being planned and commissioned. (Commissioning is the process by which the health and care needs of local people are identified, priorities determined and appropriate services purchased.) People frequently feel that their views are not being acted upon and that they have had little impact on the decisions that are taken. A continuous dialogue with people is needed, on many levels, to strengthen public understanding of the issues.
In Manchester, the carer of a patient with learning difficulties highlighted to PALS the problems around treating and communicating with patients with learning difficulties. PALS worked with Manchester People First, a self-help advocacy group for people with learning disabilities, and Manchester Learning Disability Partnership to identify the problems and ways of overcoming them. At an event, people with learning difficulties told staff they felt ignored, scared, bullied and
uncared for. They wanted explanations, such as “What an illness means, what needs to be done.You leave the hospital worrying and feeling more ill because you haven’t understood what is wrong with you, what it means or what to do!” and they told the staff what they would like.
With their help and the assistance of the Medical Director, the Head of Training, the Clinical Governance Manager and the Chief Nurse, changes were made. Pictorial guides to accident and emergency departments and theatre were specifically prepared (these were also useful for people who have difficulty reading English), alerts were put on the hospital computer system in accident and emergency and ‘protected admission’ was set up for patients with complex needs.
Patients who previously were so frightened of attending the hospital that they would stop eating now say they like the hospital, and the ‘did not attend’ rates have dropped. From‘Now I feel tall’: What a patient-led NHS feels like(DH, 2005a).

The Government is committed to:

developing a health and social care system planned around the needs of individual people and those of the wider community;

creating health and social care services that are, regardless of who provides them, user-centred, responsive, flexible, open to challenge, accountable to communities and constantly open to improvement; and

devolving decision making to the local level. Some 80% of the NHS budget is now devolved to PCTs, meaning that priorities are decided locally. To achieve, this we recognise that the current systems for involving and engaging with patients and citizens will have to be strengthened and improved.

The White Paper Our health, our care, our say(DH, 2006a) says that a stronger voice for local people is needed as ‘when people get involved and use their voice they can shape improvements in provision and contribute to greater fairness in service use’.
A number of significant changes are being made to health and social care systems, and people are being given a greater choice and control over the services they use. For example, practice-based commissioning will enable groups of GP practices to work together
to commission community-based services that are more convenient for patients. These changes mean that NHS organisations, with their social care colleagues, need to have more effective and systematic ways of finding out what people want and need from their services. They need to reach out to those people whose needs are the greatest, to people
who do not normally get involved and to people who find it hard to give their views.
Four principles underpin the new arrangements for involving people in improvements and changes to health and social care services. They are independence and engagement, accountability and transparency.
The new arrangements aim to achieve a balance between independence and engagement. They will enable the people involved to be sufficiently:

independent of commissioners and providers so that they can act in the interest of the local community; and

engaged in debates with commissioners and providers to be able to influence decisions being taken about their health and social care services.

NHS organisations need to be more accountable to their local populations for the services they provide and commission. One of the strongest forms of accountability is through transparency, so that everyone can see what is going on and why.
The new arrangements for involving patients and the public will:

build the capacity of local populations as well as voluntary and community organisations toengage with health and social care; and

strengthen the way in which people’s views are gathered, listened to, responded to and taken into account when healthcare services are being planned, developed and commissioned.

They will make sure that:

people are encouraged and given opportunities to have their say in how providers improve their services;

local people are involved in how the quality of services is assessed and continually improved;

NHS trusts and PCTs are accountable to their local populations, and that the organisations are held to account; and

commissioners engage with, respond to and are accountable to the communities and groups within their populations.

A new framework for user and public involvement

Between August 2005 and May 2006, the Department of Health undertook a review of patient and public involvement. From this we know that many people want to have a greater say in how their local health services are provided and think it is very important they are
consulted, not only about changes to existing services but also about the design of new services and future local priorities for health and social care.
Some people want to have an ongoing role while others want to dip in and out. An ongoing involvement and engagement process will support the constant cycle of service improvement.
The new arrangements have:

a strong focus on involving patients and the public in commissioning services;

a robust framework of duties for people working in healthcare to achieve effective involvement;

opportunities to develop and build public involvement in more flexible and creative ways;

a commitment to building capacity in voluntary and community organisations and supporting people, so they can contribute effectively to the development of healthcare services; and

the flexibility to build on the many involvement activities and expertise already in the health and social care system.

The new framework has five elements:

local involvement networks (LINks);

overview and scrutiny committees and commissioning;

explicit duties to involve and consult;

a stronger national voice; and

a stronger voice in regulation.

Local involvement networks (LINks)

LINks will be at the heart of the new arrangements to strengthen the voice of local people. Each local authority with social service 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.

Purpose

We believe that people can have a real impact on the nature and quality of services, and for that to happen we need to:

provide a flexible way for local people and communities to engage with health and social care organisations;

support and strengthen open and transparent communication between people, commissioners and providers; and

make sure organisations that commission and provide health and social care services are more accountable to the public and build positive relationships with them.

We believe LINks will be able to deliver these aims in ways that are flexible, inclusive and appropriate to local people and communities, and for this reason, we think it is important that LINks are set up and managed locally.

What will LINks do?

LINks will have the flexibility to work with the changing landscape of the NHS and social care systems and to fit in with their local circumstances. They can:

gather information from a wide range of people and a wide range of sources – information about what local people need in terms of both their health and social care services and about their experiences of using these services in their area. Information could be gathered from existing sources such as PALS, complaints, the national survey and through other means of engaging people such as dedicated websites, user groups and focus groups;

analyse the information and decide what to pass on. They will identify and pass on trends and make recommendations to the organisations (commissioners, providers, managers, OSCs and regulators) responsible for delivering and scrutinising health and social care services;

be a means by which commissioners, OSCs and regulators access the views of the local population;

encourage and support users and the public to participate in commissioning, scrutinising and reviewing health and social care services; and

be involved in the development of the ‘prospectus-style’ document, proposed in Health reform in England: commissioning framework (DH, 2006c).

The information they gather will help:

commissioners make informed decisions about what people in the area need, and assist them in their role as contract managers;

providers who need ongoing feedback to know what it is like to be a recipient of the services they have delivered;

managers to know whether commissioners are purchasing services that meet the needs of local people and whether providers are meeting those needs;

OSCs base their reviews on actual feedback (the LINk can inform the OSC, and members of the LINk may be able to participate in OSC activity);

the regulators have access to local information on the public’s and users’ needs and experiences; and

local strategic partnerships, which work to draw together priorities and initiatives within local area agreements.

The LINk:

will have the ability to set its own agenda within the scope of its statutory functions, enabling local people to champion local issues;

is not there to replace wider involvement, it is there to promote it – it is one of the ways in which commissioners and other decision makers can access local opinion;

will establish a specific relationship with OSCs, and the information it gathers will help OSCs carry out their functions; and

will want to build an effective relationship with the local strategic partnerships.

Opportunities

LINks should operate in an inclusive way with a membership that includes user groups, local voluntary and community sector organisations and interested individuals. It is important that these arrangements offer scope to groups such as children and young
people, especially those who are not always included. There will be opportunities for existing patient forum members to get involved in the new arrangements and to work alongside a more diverse range of people and organisations. However, how members are appointed will be decided at a local level.
We think that members of the community who are involved in LINks may be ideally placed to take an active role in the OSCs’ review activities. This may include, for example, acting as an adviser during a particular review. The period leading up to LINks being established will be an opportunity for forum members to forge and strengthen links with relevant community groups and voluntary organisations.
In the future there will be a greater emphasis on joint commissioning for health and well-being; LINKs will well placed to work with commissioners across health and social care boundaries.

Funding

We wish to make funds available to local communities to help them develop LINks in ways that are right for them. Money will be given to the local authorities, which will, perhaps jointly where that seems appropriate, consult with local organisations such as voluntary and community groups or social enterprises to identify the most appropriate arrangements for hosting the LINks. A guide and model contract outlining the basic principles will be provided to assist local authorities in tendering for a host organisation to run the LINK.

Governance

The host organisation will:

develop the LINk;

recruit members; ?Q

establish good communication arrangements; and

support the development and management of a governance structure.

OOOOOOOOOOOOOOOOOOOOOOOOOOO

Extracts from the government research document on the Local Government and Public Involvement in Health Bill

In the area of patient and public involvement in health, the Bill:

Places new duties on local authorities to foster patient and public involvement, both in the NHS and in social services, by entering into contracts for the establishment of Local Involvement Networks (LINks);

Abolishes parts of the existing system for patient involvement in the NHS – the Patient Forums and the Commission for Patient and Public Involvement;

Clarifies the existing duty of NHS bodies to consult users over NHS changes by specifying that the relevant changes and decisions must be significant and by defining the meaning of significant;

Creates a new duty for Primary Care Trusts to report on their consultations.

In terms of territorial extent, the Bill in general extends to England and Wales but most of it applies in relation to England only. The Bill gives the National Assembly for Wales framework powers to legislate for Wales on a range of local government matters.

XII Patient and public involvement in health and social
care

Part 11 (clauses 153-164) of the Bill would:

place new duties on local authorities to foster patient and public involvement, both in the NHS and in social services, by entering into contracts for the establishment of Local Involvement Networks (LINks)

abolish parts of the existing system for patient involvement in the NHS – the Patient Forums and the Commission for Patient and Public Involvement

clarify the existing duty of NHS bodies to consult users by specifying that the relevant changes and decisions must be significant and by defining the meaning of significant

create a new duty for Primary Care Trusts to report on their consultations

This Part of the Bill applies to England only. Reference to Welsh bodies are to exclude them. References in brackets are to the National Health Service Act 2006, which comes into force on 1 March 2007. Although the wording may be slightly different in the 2006 Act from in the original legislation, it is a consolidation Act and the effect is therefore intended to be the same.

A. Background
1. User involvement: the NHS and local authorities. Policies to involve users in the NHS have been controversial. The debates have been
complicated by the different meanings of involvement and the distinct, but not necessarily conflicting, purposes that it has been considered to serve: individual and/or collective interests; quality of service and/or accountability of decision-makers; national and/or local interests, etc.

Such broad categories may themselves contain different elements. For example: involvement of individuals may mean helping them when they
need to make complaints and/or encouraging them to be involved in their treatment. Involving collective interests may focus on enabling as many diverse groups as possible to be heard and/or ensuring that those who make decisions answer to a democratically elected body.

Whether user bodies, of whatever kind, are considered to be the most appropriate mechanism has partly depended on what the purpose of involving users has been considered to be. Other mechanisms have in practice also been used. For example, the constitution of Foundation Trusts enables local individuals and staff to be members and to elect at least half the board of governors. Similarly, the Patient Choice policy is
designed to allow patients to vote with their feet by choosing where they will receive treatment.

The role of local authorities in providing a “democratic” element has been a recurring issue. Before the NHS was formed, local authorities had responsibility for some hospitals, and, in the early years, putting local government in charge was considered on several occasions. Although this structure was rejected, the idea that local government
should have some role in relation to the NHS continued. A large proportion of the membership of Community Health Councils, which were in existence from 1974 to 2003 and were designed to represent NHS user interests, was drawn from local authorities. More recently, local authority Overview and Scrutiny Committees were given the power to scrutinise health services in their area.²⁰²

Unlike the NHS, social services are the responsibility of local authorities. Historically there has been a divide between the two types of service. The NHS has had a national structure with the Secretary of State for health at the head. Although the Secretary of State’s functions have been increasingly devolved to local areas, they have been
devolved to local health bodies rather than to local authorities. Over time there have been attempts to encourage joint working between the NHS and local authorities. For example powers to pool budgets were introduced by the Health Act 1999 and Care Trusts by the Health and Social Care Act 2001 respectively. The reorganisation in 2006 of Primary Care Trusts, which commission most NHS services, means that many of them have the same boundaries as local authorities - around 70% compared with 44% beforehand.²⁰³ Nevertheless the two services remain distinct and have given rise to different issues.

Replacement of Community Health Councils
The Bill deals with three existing aspects of patient and public involvement in the NHS: Patient Forums, the National Commission for Patient and Public Involvement and the “section 11” duty of NHS bodies to consult users. These were all introduced in 2003 as part of a system designed to replace Community Health Councils (CHCs), which had
been in existence since 1974.

The Government’s intention to abolish the Community Health Councils (CHCs) had been announced in the NHS Plan in summer 2000.²⁰⁴ The Plan said that it was time to “modernise deepen and broaden” the way that patients’ views were represented in the NHS and that CHCs had three distinct functions that did not necessarily have to be performed by the same body:

supporting individual patients and complainants

monitoring hospital and community services

providing a citizen’s perspective on service changes

The Health and Social Care Bill in the 2000-2001 Parliamentary Session contained provisions to abolish Community Health Councils. The proposals were controversial and were dropped but the Government said at the time that it would return to the issue and
that further legislation might be necessary. The Health and Social Care Act 2001, did,

however, contain other measures relating to patient and public involvement, including the extension of local authority overview and scrutiny committee functions to health and a new duty (contained in section 11) for NHS bodies to consult patients and public.

Provisions to abolish Community Health Councils were then included in the National Health Service Reform and Health Care Professions Bill, which received Royal Assent in 2002. The Government’s proposals remained controversial. Concerns included a fear that the new system might be too fragmented and insufficiently independent and the
powers of PCT Patient Forums were, as a result, increased during the passage of the Bill, which also provided the statutory basis of the Commission for Patient and Public Involvement.

The provisions in these two Acts were supplemented by others that did not require legislation. As a result, when Community Health Councils were finally abolished on 1 December 2003, the following bodies had come into existence or were on the verge of doing so, and the following new powers had been introduced.

Patient Advice and Liaison Services (PALS)205

Independent Complaints Advocacy Services (ICAS) 206

Overview and Scrutiny Committees - power to scrutinize health services207

Patient and Public Involvement Forums (PPIFs)

The Commission for Patient and Public Involvement

Strategic Health Authorities, NHS Trusts and Primary Care Trusts - new duty to consult patients and public in service planning and operation

Details and developments relating to the last three, which are affected by the current Bill, are described below.

Patient and Public Involvement Forums (Patients Forums or PPIFs)

Patient Forums became operational on 1 December 2003 when Community Health Councils came to an end.²⁰⁸ One was created for every NHS Trust (and later every Foundation Trust) and Primary Care Trust. Their members, who are volunteers, are appointed by the Commission for Patient and Public Involvement (described below) and
they elect their own chairs. There are currently around 550 Forums, each one of which has an average of eight members. The current system therefore directly involves 4,500 people.²⁰⁹

Some of the main functions set out in the primary legislation are listed below. Patient Forums must:

monitor and review the range and operation of services provided by, or under arrangements made by, the trust for which it is established

obtain the views of patients and their carers about those matters and report on those views to the trust

provide advice, and make reports and recommendations about matters relating to the range and operation of those services to the trust (and, in doing so, have regard to views of patients and their carers)

make available to patients and their carers advice and information about those services

In addition, Forums may be required to carry out functions prescribed in Regulations and has various powers, including the power to refer matters to a relevant Overview and Scrutiny Committee. Regulations enable them to enter and inspect premises and also place requirements on NHS bodies to supply them with information when requested.²¹⁰
Similar provisions apply in relation to independent providers.²¹¹ The Forums have to produce an annual report.²¹²

A Forum for a Primary Care Trust has extra functions under the primary legislation:

providing independent advocacy services for patients and individuals in the Primary Care Trust’s area

making advice and information available to patients and their carers about making complaints

representing the views of members of the public in the Primary Care Trust’s area about matters affecting their health to persons and bodies which exercise functions in relation to the area of the Primary Care Trust (including, in particular any relevant overview and scrutiny committee).

promoting the involvement of local members of the public in consultations, decision-making etc. by NHS bodies and other public bodies on health matters

make available advice and information to members of the public about such involvement

advise NHS and public bodies dealing with health matters about encouraging such involvement

monitor how those bodies are achieving such involvement

In practice not all of these functions have been brought into play. For example, the Secretary of State has used separate powers to contract out advocacy services to other bodies.

A report on the work of the Forums in 2005/6 is available on the website of the Commission for Patient and Public Involvement, which manages and advises the Forums (see below).²¹³ The support for PPI forums is provided by around 140 Forum Support Organisations. They are not-for-profit organisations and they work under contract to the Commission for Patient and Public Involvement.

In July 2004, the Government announced that the Commission for Patient and Public Involvement would be abolished (see below). This led it to set in motion a review of alternative means of support for Patient Forums. At the time, Melanie Johnson, then Parliamentary Under Secretary at the Department of Health, said that the Forums were the cornerstone of patient and public involvement: “They will not be abolished, nor will their independence be undermined.”²¹⁴

By October 2005, most of the policies that the Government had announced relating to Patient Forums were dropped or put on hold. The Government said that plans to give the NHS Appointments Commission additional responsibilities to appoint members and
chairs of Patient Forums would not go ahead; plans to reconfigure Forums around Primary Care Trusts alone would not go ahead in view of the planned reconfiguration of the PCTs themselves; and generally policies in this area had been put on hold pending the results of the strategic review of patient and public involvement. ²¹⁵

In January 2006 the Government published its White Paper on the future of primary care and community services, chapter 7 of which set out the broad policy towards patient and public involvement but did not mention specific details.²¹⁶ The review into patient and public involvement, which had been started in August 2005,217 and the recommendations of the expert panel set up to examine the evidence it collected, were published in May 2006.²¹⁸

The proposal to abolish Patient Forums and to replace them with Local Involvement Networks (LINks) was made in July 2006, when the Department published A stronger local voice: a framework for creating a stronger local voice in the development of health and social care services.²¹⁹ Responses to this consultation document and the
Government’s conclusions were published in December 2006 at the time the current Bill was published.²²⁰

4. The Commission for Patient and Public Involvement
The Commission for Patient and Public Involvement in Health was established as a non-departmental public body in January 2003 to oversee the new system of patient and public involvement. One of its main functions is to advise the Secretary of State on arrangements for public involvement in, and consultation on, matters relating to the
health service. A summary list of its functions is provided on the Department of Health website.²²¹ The Commission:

sets up, funds, staffs and performance manages all PPI Forums

appoints all members to PPI Forums

sets quality standards for, and issues guidance to PPI Forums

submits reports to the Secretary of State for Health on how the whole system of patient and public involvement is working and advises him about it

makes reports as it sees fit to other national bodies such as the Healthcare Commission, the NPSA and any other body (including the media) on patient and public involvement issues and issues that in its opinion give rise to concern about the safety or welfare of patients

carries out national reviews of services from the patient’s perspective – collating data from PPI Forums and making recommendations to the Secretary of State and to other bodies and persons it considers appropriate

The Commission receives a total budget of around £28 million a year, around one third of which is spent directly on supporting and running the Commission. The rest is spent on contracts with organisations to provide support to Patient Forums.223 The report and accounts of the Commission for 2005/6 are available on its website.

On 22 July 2004 the Government published the report of a review into NHS “arm’s length” bodies. John Reid, then Secretary of State for Health, announced that the number of such bodies would be reduced, saving at least £500 million and increasing resources that could be channelled directly to frontline NHS patient care. One of the “arm’s length” bodies affected was the Commission for Patient and Public Involvement in Health, which would be abolished. The review document said:

The Commission for Patient and Public Involvement in Health will be abolished. Patients’ Forums will remain the cornerstone of the arrangements we have put in place to create opportunities for patients and the public to influence health services.

Stronger, more efficient arrangements to provide administrative support and advice to Forums will be put in place. These will enable Forums to concentrate on their core functions, maximising the resources available for spending on real involvement rather than administration. The NHS Appointments Commission will appoint Forum members in the future.

A clear quality framework for Forum activities in monitoring and reviewing health services will be established and communicated to Forums. The best body to do this will be identified in discussion with others including the Healthcare Commission, which itself has a duty to improve services in the interests of patients and public. It will be important that the details are discussed fully with stakeholders before the necessary primary legislation is taken forward.

The Commission took part in the review of patient and public involvement that followed. Extracts from the overview paper that it submitted to the expert panel set up by the Government early in 2006 are reproduced below. The Commission argued that it was not
feasible to continue with the current system and instead recommended a system of local networks. Its description of the failings of the current system is set out below:

There are high levels of frustration within the system caused by discordance between vision in legislation and implementation;

With the Department of Health emphasising only the service improvement function, monitoring and review of services is too often the sole pre-occupations of Forums;

Too much has been expected of too few people. It is unrealistic to expect volunteers, however committed, to do all the things that are expected of Forums to improve all of the NHS services in their area, as well as to engage the wider community in holding the NHS to account;

Governance arrangements and bureaucracy, which of necessity accompany the monitoring function, have stifled enthusiasm and are expensive and time consuming. Regulations place constraints on a volunteer’s freedom of action and an extensive amount of Commission staff time is taken up with governance and disciplinary matters;

It has proved difficult to widen the pool of participants to reflect diversity in local populations. Current arrangements tend to exclude people who are employed or who have limited time to offer for instance because of caring responsibilities. Most Forum members are not economically active or are past working age. The role requires a time commitment that others are unable to make;

The quasi-statutory role of Forum members dampens people’s early enthusiasm on initial involvement; and forms a barrier to first time volunteers and to people wanting to become involved on an episodic or thematic basis;

The system is too orientated towards particular NHS institutions rather than encompassing the patient’s journey through a variety of health and social care services and, despite some good work, does not easily facilitate networking;

Current arrangements do not enable the development of wider PPI activity at the local level including the voluntary and community sector.

There is confusion between the “internal” PPI activity of Trusts and the role of the PPI Forums, the role of Overview and Scrutiny Committees in PPI, and also between PPI in service improvement on the one hand and in long term service planning on the other;

There is a lack of clarity about where responsibility lies to develop and support the systems and processes for dialogue and engagement on particular issues – it is unclear what is the role of Trusts, PPI Forums, and Overview and Scrutiny Committees;

The social care remit is a secondary focus at most;

The accountability role of Forums has been undermined: their smaller than expected size has made it hard to make them authoritative and representative in any real sense. The circumscribing of their powers through the regulations, combined with their poor resource base for administrative support, has meant limited local networking. The short and unstable life of Forums has dented public confidence in their ability to engender improvements in services.

5. “Section 11” duty of NHS bodies to consult users
Section 11 of the Health and Social Care Act 2001 (section 242 of the NHS Act 2006) places a duty on Strategic Health Authorities, Primary Care Trusts and NHS Trusts to involve and consult patients and the public in planning the services that they are responsible for; developing and considering proposals for changes in the way those services are provided; and making decisions that affect how those services operate.

This duty came to the attention of the press during 2006 when a Derbyshire woman tried to block a Primary Care Trust from awarding a GP contract to a US firm. Overturning an earlier decision of the High Court, the Appeal Court ruled that NHS patients had not been
properly consulted over the plan to allow the firm to run local GP services, thus requiring the Primary Care Trust to conduct an investigation under section 11.

Guidance on the duty points out that although the form of this particular duty was new, consultation on changes to health services was not; Community Health Council Regulations 1996 had required Strategic Health Authorities (and previously Health Authorities) to consult on proposals for any substantial development or variation to health services. The guidance also mentions other duties to consult within the NHS, including the requirements to consult on varying the area of, abolishing, or changing the name of NHS bodies such as Primary Care Trusts, NHS Trusts and Strategic Health Authorities.

The guidance highlights the difference between the section 11 duty and the duty created by Regulations under section 7 of the Health and Social Care Act 2001 for NHS organisations to consult local authority Overview and Scrutiny Committees. The latter relates to any proposal for a ‘substantial development or variation’ of the health service
whereas the section 11 duty, “still applies whether or not a proposal constitutes a substantial variation or development”. The word ‘substantial’ is not defined in the legislation on the section 7 duty but there is guidance on the duty from the Department of Health, which describes factors that might be taken into account when deciding whether a change is ‘substantial’.

B. The Bill
A detailed account of the clauses in Part 11 of the Bill, its rationale, responses that the Government has received on its proposals and further details about the way that they might work are available from the following documents published in December 2006:

The Explanatory Notes provide a description of the clauses

The Regulatory Impact Assessment provides information about the rationale, costs and potential impact

Government Response to A Stronger Local Voice provides details of the rationale for the proposals, reactions to them and how they are intended to work in practice233

Below is a summary of the Bill together with extracts from the documents listed above. A good deal more detail is in the documents, including, in the last one, the concerns of Patient Forums, which are also available on the website of the Commission for Patient and Public Involvement.

Clauses 153-159 provide for the new patient and public involvement arrangements, which will include local involvement networks. They provide that:

Each local authority must make contractual arrangements with someone other than a local authority to ensure that local involvement networks can exist and function. The activities of local networks would include promoting and supporting the involvement of people in the commissioning, provision and scrutiny of local health and social services; obtaining the views of local people, making those views known to the relevant bodies, and suggesting improvements to local health and social services. Local authorities would be able to make payments.

Regulations may require service providers to respond to local improvement networks.

Regulations may require service providers to allow authorized representatives of local improvement networks to enter and observe activities in premises owned or controlled by the service-provider.

Overview and Scrutiny Committees must acknowledge receipt of a referral about a social services matter from a local involvement network and inform the referrer about the Committee’s actions.

Local authorities’ contractual arrangements must include provision requiring annual reports from each local involvement network.

The Regulatory Impact Assessment details the rationale for the change:

The changing structure of the NHS, with an increasing plurality of providers and more focus on commissioning means that it is no longer appropriate to have a PPI system which is based around individual providers. In the current system, each Patient’s Forum scrutinises the services of its individual body (Hospital Trust, Specialist Trust, PCT etc).

We wish to create a system of PPI which is capable of following the whole user experience, rather than looking at services in isolation. For this reason we wish to create a system which can apply equally to health and social care, which can encourage involvement and input from people who use, or might use, any health or social care services in the area. [paragraphs 7 and 8 on pages 49 and 50]

The Government Response document explains that the local authority’s role would be to tender a contract for a host organization to support the local involvement network [paragraph 1.26] and sets out the difference between the proposed local involvement networks and the existing Patient Forums:

...there are several fundamental differences between PPI forums and LINks, for example LINks will cover social care services as well as health, they will be established for a geographical area rather than a specific organization, and they will also decide locally how members will be appointed and how others will be able to contribute to their work priorities.

An important difference is that LINks are specifically designed to reach out to and include, a wide range of existing local groups representing patients and the public and to provide a channel for local health and social care organizations to engage with those groups. LINks should not be based on methods of involvement that exclude groups of people because of the time commitment involved or unfamiliar ways of working. We are therefore keen for other voluntary and community groups and individuals with experience of different methods of engagement to
participate in LINks, bringing expertise from other areas... [paragraphs 1.5 and 1.6]

The earlier documents on the Government’s proposals had suggested that, unlike Patient Forums, local involvements networks might not have powers of inspection. The Response document explains that the Government has decided that such powers would be a good idea after all:

To enable LINks to gather information from all types of patients and users of services, there will be times when it is right to collect peoples’ experiences whilst they are currently using services. We therefore plan to provide LINks with the power to enter health and social care premises (with some exceptions) and to observe and assess the nature and quality of services. A LINk will form a view of services by talking to people using them and by speaking to staff....[Paragraph 1.41]

PPI Forums currently have the right to inspect NHS premises, and many forum members felt that rights of access would be essential to ensure that LINks are as effective as possible. In particular, the survey conducted by Health Link, in which many forum members participated, was extremely compelling....[Paragraph 2.13]

The Regulatory Impact Assessment says:

...A limited amount of data is collected about the number of inspections currently conducted by Patients’ Forums – CPPIH collects this data, but only on a voluntary reporting basis, and therefore our figures may not show the whole picture. However, they show that on average, 300 inspections are conducted every month, making a total of 3,600 Forum inspections every year. The move from having 570 Forums to only 152 LINks should reduce the number of visits as fewer bodies will be conducting them and LINks will target their inspections, and they will be strategically planned and based on the evidence the LINks gather.
Extending these rights to some social care premises may however mean that there are some additional visits to these services. There will however be limits on which social care institutions LINks will have the power to enter, for example, they will not be able to enter facilities providing services to children. [page 54]

The requirement for Overview and Scrutiny Committee to respond to referrals relates only to social services but as Section 7(3) of the Health and Social Care Act 2001 already provides for various Regulation-making powers in relation to Overview and Scrutiny Committees and health matters, it might be possible to achieve the same result for health services by means of Regulations.

Clauses 160-162 abolish Patient and Public Involvement Forums.

Clause 163 amends the existing “section 11” duty (section 242 of the NHS Act 2006) of NHS bodies by inserting that changes and decisions on which consultation is required must be “significant”. It defines “significant” as those that have a “substantial” impact on

the manner in which services are delivered to users of those services at the point when they are received by users, or the range of health services available to those users

The clause also provides that the relevant bodies must have regard to any guidance on this duty issued by the Secretary of State.

Clause 164 requires that Primary Care Trusts must, subject to Directions by the Secretary of State, make reports on the consultations that they have carried out and on the influence that the results of the consultation has had on its commissioning decisions.

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