Health and Social Care Bill

Memorandum submitted by Breakthrough Breast Cancer (HS 45)

1 Introduction

1.1 Breakthrough Breast Cancer welcomes the opportunity to submit written evidence to the Public Bill Committee of the Health and Social Care Bill. Further to the points raised below, please also see the submission Breakthrough has made jointly with a number of other national charities [1] .

1.2 Breakthrough Breast Cancer is a pioneering charity dedicated to the prevention, treatment and ultimate eradication of breast cancer. We fight on three fronts: research, campaigning and education. Our aim is to bring together the best minds and rally the support of all those whose lives have been, or may one day be, affected by this disease. The result will save lives and change futures – by removing the fear of breast cancer for good.

1.3 Over the last 20 years, mortality rates for people diagnosed with breast cancer in the UK have improved significantly. This is thanks to a combination of better breast awareness, screening and improved treatments. However, with nearly 48,000 women diagnosed each year, and over half a million women now living in the UK following a diagnosis of breast cancer, it is vital they receive a standard of care that will offer them the best chance of beating this disease.

1.4 This submission reflects the views of Breakthrough, based on our experience of working with people with personal experience of, or who are concerned about, breast cancer. We regularly consult with members of our Campaigns & Advocacy Network (Breakthrough CAN) for their views on a range of breast cancer issues. Breakthrough CAN brings together over 1,500 individuals, regional groups and national organisations to take action locally on our national campaigns to secure important improvements to breast cancer research, treatments and services.

1.5 In preparing this evidence, Breakthrough consulted with a number of our CAN members who have experience of working within the current NHS patient and public involvement mechanisms. We hope their views will highlight the importance of involvement, as well as providing valuable insight into the keys to success for meaningful engagement with patients and the public.

2 Summary of Evidence

2.1 The Health Bill represents the most ambitious and radical set of changes

to the NHS since it was established in 1948. We welcome the Government’s aim for a health service that puts patients at its heart and we look forward to working with the Government to realise its vision of ‘no decision about me without me’.

2.2 We want to ensure that the NHS Commissioning Board and Commissioning Consortia design and commission the best possible breast cancer services and that outcomes are measured and continue to improve.

2.3 We also want to make sure that robust and meaningful patient involvement is integrated into the set up of both the NHS Board and all Commissioning Consortia as well as HealthWatch to ensure that the needs and views of people affected by breast cancer are taken into account.

2.4 We would urge the Bill Committee to consider amendments to the Bill to

- strengthen patient and public involvement

- harness existing expertise from the cancer sector

- promote best practice through guidance

3. Strengthening Patient and Public Involvement

3.1 Clauses 13L and 14P place duties on the NHS Board and Commissioning Consortia to involve the public in the design and implementation of their work (whether by consultation, being given information or other ways). As a patient organisation that represents people affected by breast cancer, Breakthrough supports proposals that seek to strengthen the collective voice of patients. Over the years, there have been a number of initiatives to encourage greater patient and public involvement. In order for any involvement mechanism to succeed, it is essential that these initiatives and activities are seen as integral to service development and design.

3.2 Since the publication last summer of the Government’s White Paper, Equity and Excellence: Liberating the NHS, members of our Campaigns & Advocacy Network (CAN) have raised a number of issues around the future of patient and public involvement (PPI). The key themes in the feedback we have received are:

- Reforming the current patient and public involvement system

- Ensuring patients’ voices are heard in new local NHS structures

- Supporting public and patients in shaping NHS services

3.3 Reforming the current patient and public involvement system

3.3.1 We welcome the Government’s aim for a health service that puts patients at its heart and recognise that much has been done over the past 10 years to move this agenda forward. However, anxiety has been expressed about the scale of change, the impact on current arrangements and the current lack of clarity about how new arrangements will work.

3.3.2 Many of the people we consulted to inform this submission have been affected, over the last 10 years, by the abolition of Community Health Councils (2003), the subsequent abolition of the Patient and Public Involvement Forums (PPI Forums), which replaced them, and the set-up of Local Involvement Networks (LINks) in 2008. This constant change has impacted the ability of patients and public to contribute at each stage, so the prospect of further change causes apprehension.

3.3.3 Respondents are reassured to hear that the proposed local HealthWatch will be an evolution of LINks, but are keen for more detail. There is a strong feeling that much has been invested by local communities in developing strong PPI pathways with their PCTs and that this investment will be lost as PCTs are abolished.

3.3.4 There is overwhelming consensus that the best way forward is utilise the lessons learnt from the past decade in two areas; helping patients and the public manage the process of change, and building on best practice from previous PPI Forums and LINks.

3.4 Ensuring patient’s voices are heard in new local NHS structures

3.4.1 Our CAN members identified several key ways in which PPI Forums and/or LINks had been effective in their ability to represent their patients and communities, lessons which they hope will be taken forward in the new PPI mechanisms. The first of these are good working relationships with senior decision-makers within the local NHS (e.g. having a place on a PCT board, being sent PCT Board papers, having a PCT Director attend LINks meetings, etc).

3.4.2 The second area identified was in LINks effectively engaging with the public, through promoting PPI opportunities as well as being a conduit of information about key primary and secondary care decisions. This ensured that a wider audience was reached and more people can have a say about local services. We hope that local HealthWatch will go further in this area in finding innovative ways to engage the wider public.

3.4.3 The third effective element was investment to capacity-build and support PPI Forums/LINks, so they can effectively engage, involve and represent service users and the wider community.

3.4.5 Current proposals appear to be complex and unclear from the perspective of patients and the public. There is some confusion over the roles of local authority Overview and Scrutiny Committees and the proposed Health and Wellbeing Boards. A significant number of respondents felt that local HealthWatch should evolve to be a "one-stop shop" for PPI in health and should encompass all the engagement mechanisms relating to commissioning, scrutiny, and complaints advocacy.

3.5 Supporting public and patients in shaping NHS services

3.5.1 There is a strong view that the expertise of current patient representatives on PCTs should be used to support the development of new commissioning arrangements both locally and nationally. In order to give patients and the public a voice in shaping NHS services, the role of PPI in commissioning should be defined in statute to give Commissioning Consortia a duty to involve patients and the public in the same way the duty was defined for PCTs.

3.5.2 There is overwhelming consensus amongst the CAN members we consulted that training and support should be provided to PPI Forums/LINks members to support them in managing the process of change and to prospective national and local HealthWatch members. They also felt training and support should be provided to the members of Commissioning Consortia to ensure they are aware of their obligations with respect to PPI and to train them on how to effectively involve patients and the public. This training and support should come from the Government and specialist bodies such as Breakthrough Breast Cancer, who have a key role in promoting breast cancer advocacy.

3.5.3 HealthWatch, at both a national and local level, needs to provide appropriate support and training to allow a wide range of patients and members of the public to be able to effectively take part in engagement initiatives.

4. Harnessing expertise from the cancer sector

4.1 Breakthrough is keen to ensure that the expertise of Cancer Networks and third sector organisations is utilised by the NHS Commissioning Board and GP Consortia. We are pleased that funding for Cancer Networks will continue as GP Consortia are set up and urge the Government to promote a new role for Cancer Networks in providing expertise to GP Consortia in how best to commission for cancer, a particularly complex condition.

4.2 Clauses 13G and 14O place a duty on the NHS Commissioning Board and Commissioning Consortia to seek appropriate advice to enable them to effectively discharge their functions from persons with professional expertise relating to the physical and mental health of individuals. These duties must be strengthened to ensure that the people consulted have either relevant clinical expertise or expertise in patient involvement (including patient groups). We feel that multi-disciplinary involvement in commissioning will help ensure services are integrated and reflect the needs and views of patients.


5. Promoting best practice through guidance

5.1 We understand the Government’s aim to devolve decision making and ensure that GP Consortia are able to act in the best interests of their local population. We also feel that Commissioning Consortia should have access to guidance highlighting current best practice, to assist them in providing the best possible services for the populations they serve.

5.2 As highlighted in section 3.5.3, one of the criticisms of the current LINks system was the lack of guidance provided to groups. As GPs will have many new duties to deal with in commissioning services, we think they should have a helping hand in setting up appropriate and meaningful patient involvement.

5.3 According to clause 45A in the Bill, HealthWatch England has the following functions: to provide advice and assistance to local HealthWatch in the exercise of their functions; to provide information and advice on the views of patients and the public and; to provide information on the views of local HealthWatch to the Secretary of State, Monitor, NHS Commissioning Board and English local authorities.

5.4 We would urge the Bill Committee to add another function for HealthWatch England – to provide guidance to the NHS Commissioning Board (and through them to Commissioning Consortia) on best practice for patient and public involvement.

5.5 This guidance should be drafted in collaboration with external experts, including third sector organisations. These guidelines must be dynamic in their methods and approach to user-involvement, drawing on examples of patient and public involvement from voluntary and community sectors. The NHS Board, Commissioning Consortia and HealthWatch will need to innovate in order to mobilise patients, advocates and active citizens who cannot or would not normally engage in traditional, committee-based roles, in order to create health services which reflect the needs and views of the population.

February 2011

[1] Age UK, Alzheimer’s Society, Asthma UK, British Heart Foundation , Diabetes UK, National Voices, Rethink, and the Stroke Association .