Involving people in their own health and care.

1 The NHS Plan sets out the Government’s ambitions to create a patient-centred NHS. Our vision is to move away from an outdated system of patients being on the outside, towards a new model where the voices of patients, their carers and the public are heard through every level of the service, acting as a powerful lever for change and improvement. To give effect to this, the patient must be at the centre of everything the NHS does.

1.2 This document summarises the work carried out to develop the proposals in the NHS Plan to create a patient-centred NHS. It describes progress and implementation so far, and sets out the proposals that require legislation for strengthening patient and public involvement.

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1.3 Professor Kennedy’s inquiry into the Bristol Royal Infirmary set out the principles which should lead to greater public and patient empowerment. The Government agrees with these principles, and our proposals for reform will ensure that these are acted upon throughout the NHS.

1.4 The Government will respond in more detail to the recommendations of the Kennedy report later this year.

Principles underpinning public and patient empowerment as set out in the Kennedy Report:

• patients and the public are entitled to be involved wherever decisions are taken about care in the NHS;

• the involvement of patients and the public must be embedded in the structures of the NHS and permeate all aspects of healthcare;

• the public and patients should have access to relevant information;

• healthcare professionals must be partners in the process of involving the public and patients;

• there must be honesty about the scope of the public’s and patients’ involvement, since some decisions cannot be made by the public;

• there must be transparency and openness in the procedures for involving the public and patients;

• the mechanisms for involvement should be evaluated for their effectiveness;

• the public and patients should have access to training and funding to allow them to participate fully;

• the public should be represented by a wide range of individuals and groups and not by particular ‘patient groups’.

1. Introduction

1.5 The immediate focus of this document is the Government’s intention to legislate at the earliest opportunity to replace Community Health Councils with a set of arrangements that will:

• align the structures for patient and public involvement with the devolution of resources and power to the NHS frontline as outlined in Shifting the Balance of Power within the NHS;

• integrate the views of patients and citizens into every level of the NHS, and ensure that involvement and support is consistent throughout;

• make it easier to listen to patients’ voices across the NHS so that services reflect their needs;

• make it easier for citizens to contribute to strategic decisions so that services reflect and meet the needs of communities.

1.6 We will not only ensure that everything CHCs currently do will be picked up in the new arrangements, but that patient and citizen involvement will be strengthened and, as a result, will become part of day to day NHS activity. Annex A describes this.

1.7 We would welcome your comments on the proposals for the new arrangements and your suggestions as to how we can improve them. It is clear that the structural framework for the new arrangements needs to fit within the context of Shifting the Balance of Power within the NHS. However, key questions remain about how the new arrangements should operate to best effect. In this respect, we have set out a list of the key questions we would specifically like your views on, together of course, with any general points you may want to make. These questions are at Annex C.

1.8 We will consider all the feedback we receive in the context of any primary legislation that may be required, as well as subsequent secondary legislation and guidance that is produced. Where it would be helpful, we will undertake additional feedback exercises on regulations and guidance.

1.9 We are clear that changes must be made – and we are committed to making them. Your views on how we make our proposals as strong as possible, will help us ensure that patients, carers and citizens really are properly involved so they can influence their healthcare and health services in their community.

1.10 Details about how you can get involved and have your say are on page 15.

Involving Patients and the Public in Healthcar

2.1 This document signals the beginning of a discussion period on how the public and patients can be involved in and how they can influence the NHS. It builds on the proposals first set out in the NHS Plan and takes account of over a year’s worth of discussion, debate and developments.

2.2 In summary, the proposals are to replace CHCs and ACHCEW with

• statutory Patients’ Forums to facilitate and strengthen the patients’ voice;

• statutory bodies to be called Voice to strengthen and facilitate the public voice;

• and a new statutory national body called Voice – the Commission for Public and Patient Involvement in Health, to oversee the arrangements.

2.3 Details about how to comment on the proposals in this document are on page 15. Regional events will also be held – for further information about these please contact your local NHS Regional Office – the details are in Annex D.

2. Executive Summary

Involving people in their own health and care.

3.1 Just as change is needed elsewhere in the NHS, change is also needed in the way the NHS involves the public and patients – so that they can make a real difference to how the NHS works. The proposals outlined here reflect the Government’s determination to build on current best practice available to put patients and citizens at the heart of the health service.

Aligning structures 3.2 Shifting the Balance of Power within the NHS sets out our proposals to shift the power and resources

in the NHS to front line staff, who understand the needs and concerns of patients, and to the people who use and pay for the services. This will mean change at all levels of the NHS and throughout the Department of Health.

3.3 Our intention is to take account of the new NHS, and ensure that there are opportunities for patients and the public to be involved at all levels, locally, strategically and nationally.

Integrating the views of patients and citizens through every level of the NHS 3.4 The NHS can learn from patients, carers and the public – we want to ensure their systematic

involvement by making it easier for them to be involved and by creating a system that works for them and for the NHS.

3.5 Current structures relate to an outdated model whereby patients, carers and their representatives campaign to be heard from outside the NHS. It is our aim to ensure that, where appropriate, the voices of citizens, patients and their carers are on the inside, influencing every level of the service. This is an ambition we share with the Kennedy Report, which emphasised:

“…the priority for involving the public should be that their interests are embedded into all organisations and institutions concerned with quality of performance in the NHS: in other words, the public should be ‘on the inside’ rather than represented by some body ‘on the outside.”

Making it easier to hear and strengthen patients’ voices 3.6 It is clear that patient expectations are rising. People want an NHS that provides fast and responsive

services within a national framework that ensures national standards are consistently high. But they also want an NHS that is responsive to their needs, listens to their views, and acts on their concerns – a patient-centred NHS.

3.7 The proposed reforms outlined in the Shifting the Balance of Power within the NHS are designed to better reflect patients’ needs by devolving power to frontline staff and breaking down barriers between services. But these reforms will not work unless they are informed by the views of people who use and deliver the service.

3. Background

3.8 Transforming the NHS into a modern patient-focused service means not just extra investment or far reaching structural reforms. It means changing the culture and the way the NHS works, so that listening to and acting upon the views of the people who it is there for, becomes the norm and people are helped and encouraged to make their views known.

Making it easier to hear and strengthen citizens’ voices 3.9 People want to be involved, not just as patients or users of the NHS, but as citizens who fund the NHS

for the benefit of themselves, their families and the wider community. There are examples of good citizen involvement around the country, but current structures do not always ensure that communities have a direct say in local NHS planning and the decisions that affect their health. We want to change this so that everyone has the opportunity to have a say.

3.10 The Government wants to empower citizens as well as providing first class public services. We are determined to increase public involvement as much as public investment; to reform the way we engage the public as much as to reforming the way we deliver public services; and to decentralise as a key part of delivery.

3.11 We recognise that to achieve this we need to build capacity by providing support for local communities – particularly minority and hard to reach groups. We need to reach out and help them become involved, so that they can put forward people who can fully and actively engage in the decision making process.

4. How we will achieve our aims Progress so far 4.1 The NHS Plan, published just over a year ago, set out the route map for every aspect of the NHS.

That programme of reform is well underway and already the Government has set in train its plans for restructuring the way the public can have greater control and influence over the NHS.

4.2 The Health and Social Care Act 2001 puts in place the building blocks for our patient empowerment agenda. It enshrines in law:

• new powers for local government Overview and Scrutiny Committees to scrutinise the NHS;

• a new duty on the NHS to involve the public in the planning and development of services, and in major decisions;

• a new duty on the Secretary of State to make independent advocacy services available to people wishing to make a complaint against the NHS.

4.3 These and a number of other initiatives are discussed in more detail below.

Scrutiny – independent, democratically elected bodies holding the local NHS to account 4.4 The Act extends local authority Overview and Scrutiny Committees’ (OSCs) role into the NHS. This

means that democratically elected bodies will now be able to scrutinise the NHS, and call local NHS Chief Executives and other NHS managers to account. This power will not come into force until the necessary regulations have been made; we anticipate this new role coming into effect next year. There will be a formal consultation process on the nature of the regulations and the guidance necessary.

Involving Patients and the Public in Healthcare

Involving people in their own health and care.

Public Involvement – a duty on the NHS to involve and consult the communities it serves 4.5 The Act places a new duty on the NHS to involve the public in the decisions it makes. We do not intend

prescribing to the NHS how to do this – we envisage producing a tool kit and/or best practice guidance. We will do this in tandem with the implementation of the wider arrangements for patient and public involvement in the NHS.

Information and on the spot help – solving problems and securing improvements for patients and carers 4.6 By April 2002 Patient Advocacy and Liaison Services (PALS) will be in place in every NHS trust and

Primary Care Trust (PCT) in England, to provide information to patients, their carers and families and to help them to resolve problems and concerns quickly before they become more serious. PALS will also provide help by putting people in touch with specialist advocacy services, including independent advocacy and support to make a complaint.

4.7 The PALS must not work in isolation, but must work across organisational boundaries. We know that patients will often use many organisations as they progress through the patient journey. PALS will operate within a local network to provide support to patients and their carers as they pass from one organisation to another to ensure that patients’ concerns are picked up and dealt with in the most appropriate way for the patient concerned.

4.8 The PALS will be a key source of information and feedback for the trust and the local Patients’ Forum and will act as an early warning system, detecting, reporting and, where possible, resolving potential major problems before they escalate. The PALS will send anonymised reports to the local Patients’ Forum and to the trust about their work and action taken, identifying gaps in the system and areas for NHS staff training and development. The annual Patients’ Prospectus will include information about changes that have been made as a result of PALS’ work. Involving people in their own health and care.