Health and Social Care Bill

Memorandum submitted by the Health Foundation (HSR 20)

1. ABOUT THE HEALTH FOUNDATION

1.1. The Health Foundation is an independent charity working to continuously improve the quality of healthcare in the UK. We are here to inspire and create the space for people to make lasting improvements to health services. Working at every level of the system, we aim to develop the technical skills, leadership, capacity and knowledge, and build the will for change, to secure lasting improvements to healthcare.

1.2. In our evidence to the Public Bill Committee on the Health and Social Care (re-committed) Bill we are focusing upon changes that need to be made to the Bill to put patients centre stage and creat e an NHS in which the principle of ‘No decision about me without me’ can become a reality .

2. EXECUTIVE SUMMARY 2.1. For the NHS to be a first class health service, we need people to be given the right support so that they can be in control of their own health and healthcare decisions. 2.2. The NHS needs to transform the way it helps people to become involved in their own care and supports people to make choices. A system that offers true choice supports everyone to make good daily choices about their health. It supports people with the choices about what sort of healthcare they need and what type of treatment would suit them, as well as who provides that treatment. 2.3. In order to embed the principle of ‘No decision about me without me’ into the daily experience of patients and their families, an essential first step will be some specific changes to the Health and Social Care Bill. 2.4. The Health Foundation welcomes the NHS Future Forum’s recommendation of a more sophisticated approach to the choice agenda with a strong emphasis on genuine involvement in care. We also welcome the apparent shift in the government’s thinking about choice from a focus on choice of provider to a broader conception that encompasses choice of treatment. 2.5. We are recommending the following changes to the Health and Social Care Bill relating to the creation of new duties of patient involvement and patient choice for the NHS Commissioning Board and commissioning consortia: · Creation of a separate duty of individual patient involvement in decisions about their own treatment. This should be expressed as a section in its own right, not a sub-section of the duty about reducing health inequalities. And a clear distinction should be made between the current duty of collective involvement in decisions about provision of services to the community and this new separate duty of individual patient involvement. · Inclusion of a new duty of patient choice. This should also be expressed as a section in its own right, not a sub-section of the duty about reducing health inequalities. · Inclusion of an explicit definition of choice on the face of the Bill. The Health Foundation’s definition of choice, which is cited in the NHS Future Forum’s report Choice and Competition, Delivering Real Choice, is: - Choice of services to support healthy living - Choice of provider and the way in which care is provided - Choice of treatment including self-management support. [1] · These new and separate duties of individual patient involvement and patient choice should use language which is as strong as lawyers advise is practical in order to enshrine the duty as mandatory, rather than discretionary. · We urge the Committee to support amendments 68, 69, 70 and 109, 110, 111 tabled by the Rt Hon Simon Burns MP, Minister of State for Health which will create new duties on both the NHS Commissioning Board and commissioning consortia as to patient choice and to promote involvement of each patient. We do however maintain that we would like to see a definition of patient choice on the face of the Bill.

3. CREATING AN NHS WITH THE PRINCIPLE OF ‘NO DECISION ABOUT ME WITHOUT ME’

Why is it necessary and important to support people to take an active role in their health and healthcare?

3.1 For the NHS to be a first class health service, we need people to be given the right support so that they can be in control of their own health and healthcare decisions.

3.2 The NHS needs to transform the way it helps people become involved in their own care and make choices about how they look after their health, what tests and treatments they have, and how their care is provided. For many years, the NHS has said to patients ‘This is what we’re going to do to you’. But that isn’t involvement nor is it choice. It’s not ‘No decision about me without me’.

3.3 A system where people are supported to be involved as active partners in their own care needs to offer true choice. True choice encompasses supporting people to make good daily choices about their health. It includes supporting people with the choices about what sort of healthcare they need and what type of treatment would suit them, as well as who provides that treatment. They are all choices that matter and that people want. Examples of these types of choice are included in the appendix.

How are people currently involved in their health and healthcare?

3.4 People who use the NHS consistently say that the choices and decisions that matter most to them are choices about the treatment and care they receive. Examples of these sorts of decisions include whether to have surgery and what type of surgery to have, and which medication to take, where there are options.

3.5 Research shows that patients care more about being able to exercise choice in relation to these types of questions than they care about being able to choose between providers of healthcare, eg which hospital or GP to use. [1]

3.6 Currently in England, the NHS performs very poorly in involving people in treatment decisions, despite the degree of priority patients attach to such involvement. The latest data published by the Care Quality Commission shows that 48% of adult inpatients are not involved as much as they want in decisions about their care and treatment and there has been little improvement in this since 2002. [2]

What are the benefits of people being supported to take an active role in their health and healthcare?

3.7 Shared decision making is the involvement of patients as equal partners in their healthcare. Tools to support shared decision making can include self-management support, access to personal health records, personal health budgets, care planning and decision aids.

3.8 The White Paper, Equity and Excellence: Liberating the NHS, looked set to address the problem of the absence of patients’ involvement in their health and healthcare with its central and welcome emphasis on the principle ‘No decision about me without me’. However, the Health and Social Care Bill frames the concept of involvement primarily in terms of the public’s involvement in the provision of services not in terms of an individual’s involvement in daily decisions about treatment and care. In the Bill, choice is limited primarily to choice of provider rather than choice of the type of care and the way in which it is delivered.

3.9 As a result of these omissions, the Health and Social Care Bill misses the opportunity to reap the benefits that have been proven through research to result from shared decision making. Benefits include:

· fewer patients choosing major surgery, creating cost savings

· better treatment adherence, creating greater effectiveness and value

· improved confidence and coping skills

· improved health behaviours such as greater exercise and reduced smoking

· more appropriate service use, particularly fewer emergency admissions. [3] [4] [5]

3.10 For clinicians, a lack of shared decision making can compromise their effectiveness: the impact of clinicians’ interventions can fall short if patients do not have the understanding or motivation required to adhere to treatment options or desired lifestyle changes. For commissioners, it means that the services provided may not deliver the best outcomes for patients or meet their individual preferences. For patients, it means that they may not receive the care that best meets their needs and they may remain as passive recipients of care rather than taking an active role in managing their own health.

3.11 Failing to see patients as partners compounds the problems that lead to them being treated without dignity or respect. We are a long way from ‘No decision about me without me’.

3.12 The government must transform what remains a very paternalistic health service and remove the enforced dependency that the current system and culture creates. There is good international evidence [6] [7] and practical experience from within the UK that shows that this is possible. [8]

4. CONCLUSIONS OF THE NHS LISTENING EXERCISE

The NHS Future Forum’s recommendations

4.1 The Health Foundation welcomes the NHS Future Forum’s recommendation of a more sophisticated approach to the choice agenda with a strong emphasis on genuine involvement in care. 

4.2 We welcome the NHS Future Forum’s statement that "shared decision making should be the norm, and that the declaration of ‘no decision about me, without me’ must permeate the culture throughout the health and care system". [9] This is expanded upon in Patient Involvement and Public Accountability. [10]

4.3 In his summary report of the Future Forum’s review Professor Field states: "In looking at what choice in the NHS means, the Forum is clear that, in line with the NHS Constitution, choice must be more than just choice of provider." [11] He recognises that "more needs to be done to deliver real choice" and this underpins their recommendation for a ‘choice mandate’. [12]

4.4 The NHS Future Forum goes on to argue that "Choice is too limited and citizens are too little involved in their own care and treatment. The health service has so far often failed to deliver on the promise, ‘No decision about me without me’". [13]

The government’s response to the NHS Future Forum and proposed changes

4.5 The Health Foundation has welcomed a noticeable shift in the way the Prime Minister is speaking about choice, from defining choice primarily as choice of provider to a broader definition. For example in his speech of 7 June he stated "When patients do have their say, and are able to make choices, it makes a massive difference. When they get involved in their care they get better results, and they manage long-term conditions more successfully too." [14] This was reiterated in a later speech. [15]

4.6 The Health Foundation welcomes the government’s promise to amend commissioners’ duties to involve patients and carers to better reflect the principle of ‘No decision about me without me.’ We also welcome the government’s proposal to amend the Bill to strengthen and emphasise commissioners’ duty to promote choice, in line with the right in the NHS Constitution for patients to make choices about their NHS care and to receive information to support those choices.

4.7 We look forward to the opportunity to respond to the government’s consultation on the choice mandate. We hope the mandate will retain the broad definition of choice proposed by the NHS Future Forum and encompassing principles including personalising care, improving outcomes, delivering choice and enabling informed citizens. [16] We hope that this choice mandate will be appropriately supported by the NHS system architecture.

5. HOW MUST THE HEALTH AND SOCIAL CARE BILL SUPPORT THIS AMBITION?

5.1 In its current form the Health and Social Care Bill is insufficient to embed the principle of ‘No decision about me without me’ into the daily experience of patients and their families.

Patient involvement

5.2 The Health and Social Care Bill includes duties "as to reducing inequalities, promoting patient involvement etc" (clause 19, page 17, section 13F and clause 22, page 30, section 14N). These duties require both the NHS Commissioning Board and commissioning consortia to "have regard to the need to promote the involvement of patients and their carers in decisions about the provision of health services to them" and "enable patients to make choices with respect to aspects of health services provided to them".

5.3 We strongly welcome these duties but regret that promotion of the involvement of individual patients is combined with the duty as to reducing inequalities. Furthermore the Bill does not give the duty to promote patient involvement the same prominence it gives the NHS Commissioning Board and commissioning consortia’s duties regarding public involvement (clause 19, page 18, section 13L and clause 22, page 31, section 14P). There is a risk that individual patient involvement is overlooked by the managers and health professionals who will be acting upon the legislation.

5.4 The Health Foundation strongly urges the following changes:

· Creation of a separate duty of individual patient involvement in decisions about their own treatment. This should be expressed as a section in its own right, not a sub-section of the duty about reducing health inequalities.

· A clear distinction should be made between the current duty of collective involvement in decisions about provision of services to the community and this new separate duty of individual patient involvement.

Choice

5.5 Choice within the Health and Social Care Bill refers primarily to choice of provider and falls short of the breadth of choices that need to be supported to help people stay healthy, manage their own health and make decisions that result in the outcomes that matter most to them.

5.6 There are three types of choice people make around health and healthcare. Some of these are choices that we all make every day about our health and how we use the NHS. Some are choices that people make less frequently and are one-off decisions.

5.7 The Bill should include a new duty of patient choice. The Bill should also include an explicit definition of choice on the face of the Bill. The Health Foundation’s definition of choice, which is cited in Choice and Competition, Delivering Real Choice, is:

· Choice of services to support healthy living

· Choice of provider and the way in which care is provided

· Choice of treatment including self-management support. [17]

5.8 Furthermore, every patient interaction needs to be built upon the foundations of dignity, privacy and autonomy. This already exists as a duty for providers within the existing regulatory system but it needs greater attention in order to become a reality for every patient all of the time. Recognising the autonomy and dignity of the patient is essential for shared decision making because when these basic needs are not being addressed – when people are in fear or pain, or are not treated with respect [18] – they cannot begin to participate as equal partners in their own care.

5.9 Both these new duties of individual patient involvement and patient choice should use language which is as strong as lawyers advise is practical in order to enshrine them as mandatory, rather than discretionary.

6. HEALTH FOUNDATION VIEW OF AMENDMENTS TABLED AS AT 24 JUNE 2011

6.1 The Health Foundation welcomes the amendments 68, 69, 70 and 109, 110, 111 tabled by the Rt Hon Simon Burns MP, Minister of State for Health which will create new duties on both the NHS Commissioning Board and commissioning consortia as to patient choice and to promote involvement of each patient. We urge the committee to support these amendments.

6.2 We do however maintain that we would like to see a definition of patient choice on the face of the Bill.

7. ORAL EVIDENCE

7.1 The Health Foundation would be happy to give oral evidence to the Public Bill Committee should it be helpful to their consideration of the Bill.

July 2011

APPENDIX

The Health Foundation’s definition of choice

Choices to support healthy living, including:	Choice of provider and the way in which care is provided, including:	Choice of treatment including:
· Choice to have a healthy diet · Choice to exercise regularly · Choice to reduce health limiting behaviours eg smoking and alcohol	· Choice of GP · Choice of hospital · Choice of self-management course · Choice of maternity provider · Choice of end of life care provider Within choice of provider there needs to be choice about how care can be accessed: · Choice of appointment time · Choice of location · Choice of style of interaction eg face-to-face, by phone or text, in writing, by email, via social networking	· Whether or not to have a diagnostic or screening test, eg pregnant women have a choice about whether to screen for abnormalities · What type of treatment to have, eg people with ongoing knee pain make a choice about whether to have surgery or whether to have physiotherapy · Whether to learn more about how to manage their own health through a self-management programme · Which medication to take, where there are options