2020: A care system fit for patients The Patients Association JANUARY 2015 1 Patients Association – An health and care system fit for patients 1. CONTENTS 1. Contents ......................................................................................... 2 2. Foreword ......................................................................................... 2 3. Our mission .................................................................................... 3 4. Our vision for 2020 ......................................................................... 4 (a) Dignity in Care ...................................................................................................... 4 (b) Transparency, Accountability and Complaints ...................................................... 6 (c) Access and Quality ............................................................................................... 9 5. Conclusion.....................................................................................12 6. Contact details ..............................................................................12 2. FOREWORD Listening to news stories about the NHS over the last two decades, you would be forgiven for thinking it is in perpetual crisis. However, given with the scale of the challenges facing the NHS, it is hard not to believe it could be at ‘breaking point’. The recent ‘Five Year Forward View’ published by NHS England offers a realistic roadmap to addressing many financial and structural challenges, assuming political and organisational commitment can be secured and sustained.i However, the challenges in the NHS must not excuse failings in the quality of treatment or patients’ experience of care. The NHS must never lose sight of the impact on the patient throughout the tough years ahead. This document outlines the Patients Association’s vision for how this can be achieved. A key principle in ensuring patients have the best experience of care is sustaining an open and honest culture in the NHS - a truly patient-centred culture where the needs of patients, their families and carers are paramount in all contacts. Often this involves addressing problems as they arise, not ignoring them until they become worse. There are significant costs to patients and the NHS if issues are not tackled early. For instance, if patients do not have the confidence in health services due to poor communication by health professionals, they often feel unable to raise issues about their health or complain. This means that the NHS will fail to learn where and how it is falling short, and systemic issues can persist. In turn, patients who do not access healthcare or receive timely treatment or diagnoses are more likely to visit A&E departments, raising NHS costs. An ongoing lack of coordination between health and care services persists in many areas, deepening the problem. The results are further costs to the NHS and social care system, as well as distress to patients and their families. 2 Patients Association – An health and care system fit for patients It is not all bad news. Indeed, whilst there are ongoing failings in patient care in parts of the NHS, many patients continue to tell us about the excellent care and treatment they have received. People working in the NHS are incredibly dedicated to offering the highest quality support, and the Patients Association recognises and celebrates that dedication in its work. We are committed to ongoing improvement of the NHS for the benefit of patients, families and carers. Being a critical friend to the NHS and working in partnership with healthcare organisations and professionals gives us the opportunity to address patient concerns. A key frustration for our members, helpline callers and our staff is that the NHS already has broad solutions to many of the concerns raised about quality of care and support. These answers are in the NHS Constitution. The Constitution gives clear and positive messages about the experiences patients should have, what the NHS should be, and how it should function.ii Fundamental values, principles, and above all patients’ rights are enshrined in the Constitution. This should be the first place healthcare professionals or patients look for guidance on what good care and service looks like. Certainly, if all NHS providers embraced the Constitution, we would be much closer to having the NHS we all deserve as patients, family members and the public. In line with the rights, values and principles of the Constitution, and our decades of experience of listening to patients, we are proud to outline our vision for patients and the NHS for 2020. We offer our expertise, drive and support in making this vision a reality. 3. OUR MISSION The Patients Association is a health and social care charity which for over 50 years has advocated for better access to accurate and independent information for patients and the public; equal access to high quality health care for patients; and the right for patients to be involved in all aspects of decision making regarding their health care. By listening to patients, we are able to campaign to improve services. We regularly work with all healthcare providers to improve services. Very often patients think they are alone with the problem or complaint they have. When patients talk to us, we are able to identify local and national issues, and influence change on their behalf. The fundamental component of our mission is to listen to patients, their carers and families. This enables us to fulfill our other goals of: influencing healthcare policy acting as agents for transformational change collaborating with other like-minded agencies to improve healthcare offering our members’ views to NHS, media and government to shape debate 3 Patients Association – An health and care system fit for patients 4. OUR VISION FOR 2020 Overview This vision document offers our analysis on the key issues for patients, taking into account the current challenges faced by the NHS, and what the aspirations should be for the next five years. This analysis is based on our years of experience listening to patients’ views and working with healthcare professionals, in addition to our practice and research projects. As a result of what patients tell us, we outline the key actions needed to improve patients’ experience of care in the NHS, and offers our support in doing so. From our analysis, these actions are distilled into three key themes: Dignity and Compassion in Care Complaints, Honesty, Transparency and Accountability Access and Quality (a) Dignity in Care Our beliefs We believe that all patients and their carers should be treated uniformly with dignity, respect and compassion. This is not a fringe idea; this belief is enshrined within the NHS Constitutioniii, and in the aspirations of the NHS Outcomes Framework.iv Current situation Patients, and their carers and family members, should be supported to feel empowered to ask questions, highlight issues and be engaged with health professionals when planning care as equal partners. However, while many people receive excellent support, frequently we see evidence that patients and their families have been ignored or undermined in the care they receive. Mary’s story (not her real name) is typical of many calls we receivev: Mary was most concerned to receive a call from the hospital at 9.15pm to say her mother who had been recovering from a stroke was being discharged from hospital. Mary lives 25 miles away and could not get to her mother’s home. She lived on her own. Mary had to contact a neighbour to prepare the house for her mother. Mary pleaded with the nurse not to send her mother home to an empty house but she was told the hospital needed the bed for an emergency. Mary was very upset and wanted to write to the hospital. She feels there was no communication or compassion. The importance patients place on being treated with dignity and respect must not be understated. Our recent report ‘Why our NHS should listen and be human’ 4 Patients Association – An health and care system fit for patients highlighted that some patients would rate being treated with dignity and respect higher than safety concerns.vi The core principle must be to treat patients and their families as people, rather than a diagnosis or number. We describe this as ‘being human’ in caring for others. This means that NHS practice always must reflect that patients need to be listened to and treated with a human touch, dignity, compassion and respect.vii Vision Our vision is that by 2020, the vast majority of patients will feel they have been treated with dignity, compassion and respect by NHS staff throughout their experience of care. This vision is ambitious, and naturally there are a number of activities that would be necessary to make it a reality. Fortunately, there are a number of clear actions that can be taken by NHS organisations and staff to achieve this goal. Actions and measures The path to ensuring patients are treated with dignity should focus on the four key issues highlighted by our CARE Campaign.viii All health and social care staff should: Communicate with compassion Assist with toileting, ensuring dignity Relieve pain effectively Encourage adequate nutrition Through contacting our national helpline, patients have highlighted that these issues are crucially important to them. As such, NHS organisations and healthcare professionals must make a commitment to improve patient experience on these issues, as the best path to ensure patients are treated with dignity, compassion and respect in all circumstances. We have a number of asks, directed to different stakeholders within this system. Trust Boards should: sign up to our CARE Challenge by the end of 2015: “as a minimum, all patients should get assistance when they call for help, encouragement to eat or drink, assistance with going to the toilet, and have their pain addressed.” All organisations should report on progress annually. We have a range of resources and examples of great practice from organisations already signed up, which show how improvements can be made locally to how patients can be treated with dignity, compassion and respect. CCGs and GPs should: engage, involve and empower patients to make informed choices through improving the communication process: 5 Patients Association – An health and care system fit for patients o offering clear information about treatment options, and what to expect from a primary care service. This must include how primary and secondary care services should coordinate and provide a seamless service to patients. o providing opportunities for patient feedback, to ensure that patients are able and confident to express their views, and have them taken seriously. It is equally vital that patients are informed how their feedback has been acted upon. o establishing a supportive, welcoming and non-threatening environment to promote an attitude of trust between staff and patients. NHS England should: add questions on the four CARE Challenge issues to NHS Patients Experience surveys by end 2015, as a measure of whether these issues are being addressed for patients. Health and social care professionals should: undertake training in line with CARE challenges in order to ensure these issues are uniformly addressed in staff practice (particularly nursing professionals, given their level of interaction with patients). Support from managers and commissioners will be essential to ensure change is implemented and sustained, and coordinated with wider workforce planning and development. Local and national politicians should: offer their support for the Care Challenge, promoting this with local people and NHS. These actions above must be taken in collaboration with the NHS, patients, families and other agencies. Following these recommendations, We believe it is achievable that by 2020, at least 90% of all patients will report that they are always treated with dignity, respect and compassion by staff within all NHS organisations. These improvements must then be maintained in future years. The most recent results for overall patient experience in these settings vary from around 75 - 80%.ix So while there is plenty of room for improvement, this is an achievable vision. (b) Complaints, Honesty, Transparency and Accountability Our beliefs We believe that the NHS should be totally transparent and accountable to patients. This view is supported by the NHS Constitution, which identifies transparency and accountability as core principles.x In turn, these principles need to be backed up with a reliable complaints system. 6 Patients Association – An health and care system fit for patients Current situation Many organisations within the NHS are models of openness and candour. However, in 2011, the Parliamentary Health Select Committee found thatxi: “There are unwarranted variations in how the complaints system works across England, some elements of the system are ineffective, and the cultures that exist often do not support effective resolution and redress” We have seen little evidence that this situation has improved since then. Too often the Association hears from patients whose reasonable complaints or concerns have been ignored. Frequently family members have struggled to hold organisations to account for failings in the care or treatment their relatives and friends have received. And patients have repeatedly experienced difficulty in communicating their concerns to healthcare professionals. Many examples are highlighted in our report, ‘Handling Complaints with a Human Touch’, and the comment below is typical of many patients’ frustrationsxii: “Complaints are met with defensiveness and a lack of desire to acknowledge the truth” We have all seen the inevitable destination at the end of that road, as cruelly demonstrated by the appalling failures at Mid Staffordshire Hospital.xiii While that is an extreme example, we all must be vigilant and uncompromising in pushing the NHS to reflect on and improve itself as a whole. The NHS will only improve with meaningful consultation with patients and a willingness to learn its mistakes as well as celebrating its strengths. Indeed, from speaking to our supporters, we know that the most common motivation for patients making complaints is not for individual redress, but to ensure that others do not have similar experiences.xiv What is worse is that the supposed ‘last resort’ for complainants, the Parliamentary Health Service Ombudsman (PHSO) appears to be inadequate, unaccountable and untouchable.xv We have heard from too many patients who have felt ‘stonewalled’ by the PHSO, who have seen investigators make crucial mistakes in investigations, and have witnessed terribly flawed decisions. We need an Ombudsman that adopts the same set of principles it expects NHS Trusts to adopt when handling complaints. xvi Being an open and reflective NHS means providing a reliable path for patients to raise concerns or complaints. We appreciate that despite the best efforts of professionals, there will be times when things go wrong and failings in care occur. Indeed, we have found that patients accept that staff may not always be able to answer concerns for a variety of reasons, but do welcome professionals addressing uncertainty directly with them to avoid ambiguity.xvii While great efforts should be made to ensure these incidents are minimised, there needs to be a reliable 7 Patients Association – An health and care system fit for patients complaints system in place, locally and nationally to ensure failings can be identified, investigated and resolved. Vision Our vision is for a truly transparent and accountable NHS by 2020, with an open culture of learning from mistakes to better serve patients, their families and carers in future. In practice, this means two things: (a) widespread understanding and application of the NHS Constitution by frontline professionals, senior NHS managers, patients and families; and (b) a more responsive, humane and transparent complaints system. Actions and measures By 2020, patients deserve to see these achievements from stakeholders: The Government should: extend the duty to promote the NHS Constitution to all NHS bodies, including NHS Foundation Trusts and Monitor. undertake an independent review of the role and accountability of the PHSO in 2015, including legislation relating to these issues, with a revamped PHSO or entirely new body put in place before 2020.xviii NHS England should: strongly promote the NHS Constitution to patients and ensure NHS organisations are aware of their responsibilities under this Constitution. measure patients’ understanding of the NHS Constitution via regular feedback mechanisms (in partnership with the Patients Association). By 2020, over 95% of patients should be aware of their rights under the NHS Constitution, and comfortable with applying them as needed. Local and national politicians should: offer ongoing support for patients to exercise their rights under the NHS Constitution, and help patients, the Patients Association and other support organisations to address shortfalls by NHS organisations. All NHS organisations should: demonstrate their compliance with the NHS Constitution annually in partnership with patients adopt the Patients Association Complaints Charterxix, and commit to upholding this at Board level. publish the number of complaints they have received quarterly, the action taken, and the impact of that action. 8 Patients Association – An health and care system fit for patients meaningfully consult patients, families and carers about all significant developments on planning, delivery and evaluation of NHS services. Sign up to the Patients Association Benchmarking survey on complaints handling. Amongst other aspects, meaningful consultation means ensuring all sectors of the community (including seldom heard and hard to reach groups) are actively encouraged to participate; offering adequate time to respond; presenting information in different formats to engage all audiencesxx; engaging patients, carers and family stakeholders before significant decisions have been made; and truly making those decisions in partnership with patients and carers. Patients, family members and carers should: use the NHS Constitution and the Patients Association Complaints Charter as tools to support them get the care they deserve. In turn, we will promote the NHS Constitution and Complaints Charter to patients, politicians and healthcare professionals at every opportunity. (c) Access and Quality Our beliefs Fundamentally, we believe that patients should have access to the support they need, when they need it. We want all patients to have access to the best care, regardless of their location or circumstances. Two crucial factors underpinning our belief are access and quality. For us, access means more than a treatment being ‘available’. Access is not joining a queue or being on a waiting list. Access means actually getting the treatment or information you need to support your health. In turn, quality means that the clinical care and the treatments patients receive are of the highest standard. These aspects are clearly interlinked. There is no point having the best quality treatments if most patients are unable to access them. Equally, poor care or outdated treatments fail to safeguard patients’ health and undermine confidence in the NHS as a whole. Current situation Access When considering access, it is hard to ignore regular media reports that many services are subject to a ‘postcode lottery’, and that there is lack of availability of support for specific conditions.xxi Even for standardised treatments, patients are often still waiting too long, comparing against the standards set by the Department of Health. For example, waiting times for a number of procedures including hernia and adenoid procedures have increased over the last four years.xxii 9 Patients Association – An health and care system fit for patients Likewise, the waiting time data the Patients Association has received via Freedom of Information requests to NHS Trusts has been hugely variable in quality and completeness. This mirrors issues in waiting times collection and measurement identified by the National Audit Office.xxiii This situation does not simply have implications for those who collect data. Without a clear understanding of how waiting times for different procedures are changing, it is impossible to appropriately direct resources to where improvements are needed. This risks NHS providers acting in direct contradiction to patients’ rights under the NHS Constitution to access services within maximum waiting times.xxiv While we work to improve the speed of access to health services with our NHS partners, we also need to ensure that the system for reporting waiting times is fit for purpose. Access to treatments is only part of the picture. Surveys undertaken for our report ‘Access Denied’ revealed that: more than a third of working age people have had to take time off work to attend an GP appointment. a third of respondents were unable to book a GP appointment at least 48 hours in advance. Over half of respondents felt that booking a GP appointment was either “very difficult” or “could have been easier”. Over half of respondents were not satisfied with the service they received from an NHS out-of-hours provider in the last 2 years.xxv This demonstrates that even for initial consultations or support, there is still a long way to go to ensure patients can get the support they need, when they need it. Access Quality There are many issues to be addressed regarding the quality of care received by patients. Crucially, there are ongoing debates about how treatments are approved for use on the NHS by the National Institute for Health and Care Excellence (NICE). NICE’s Board decided in September 2014 to leave their drug appraisal system unchanged following months of consultation and debate around a new system called ‘value based assessment’. In turn, they agreed to a further review into the potential integration of wider societal benefits and burden of illness measures. Given the impacts changes may have for the treatments available on the NHS, patients will need to be meaningfully included in these discussions to ensure their needs are incorporated in any future changes. Access to and quality of healthcare are both major concerns which will always require scrutiny by patients, charities, the NHS, government and the wider public. We appreciate that it is likely there will always be some form of geographical variation in treatment availability (though not necessarily the dreaded ‘postcode lottery’) in the NHS, as a result of differing local decisions, local population needs, funding allocations and varying uptake of new technologies and treatments. But we 10 Patients Association – An health and care system fit for patients agree with the Care Quality Commission’s pledge to call “time on unacceptable variation in the quality of care”.xxvi Equally, we respect that there is not infinite funding for treatments on the NHS. Decisions made by local commissioners or NICE can be controversial and open to challenge. We understand difficult decisions need to be made, in order to make the best use of NHS funding for the greatest number of patients. However, we cannot, and will not accept that patients in one part of the country should be denied treatments simply by virtue of their location. Equally, no patient should ever receive a poor clinical quality of care. Vision Our vision for 2020 is that patients have access to the best possible quality healthcare, delivered in a manner appropriate to their needs, whenever they need it. In particular, this would include a primary care system that is fit for the 21st century, ensuring patients are provided with the right services swiftly after presenting to primary care, and supported to stay out of hospital as far as possible. The Patients Association will continue to work with the NHS to ensure patients, carers and family members are involved in discussions and activities on the wider structural issues relevant to access and quality. We welcome the proposals on the diversification of GP and hospital services outlined in the NHS ‘Five Year Forward View’.xxvii As such, we will work to ensure patients have the choice and support necessary to be treated in the community and their own homes as needed. Indeed, many patients report to us that they would prefer to be treated at home rather than in hospitals or other in-patient settings. This will require brave choices to be made about how health and social can be integrated. But we will work tirelessly to ensure these choices are informed by, and benefit, patients themselves. We need a focussed drive to bring this vision into reality. For our part, we intend to focus on issues which patients have told us are most important to them. Actions Government should: implement the plans outlined in the Five Year Forward View on diversifying GP and hospital services. We see the NHS Five Year Forward View as a valid direction for the NHS, which offers an achievable and reasoned approach to improving patient access and the quality of services in line with our vision. In particular, we urge the next government to support the development of Multispeciality Community Providers (MCP) and Primary & Acute Care Systems (PACS) outlined in the View document, as a means of addressing patient access to treatment. Careful consideration of the support required for commissioners will be needed, to ensure these new models can be effectively established and sustained. NICE should: 11 Patients Association – An health and care system fit for patients run a comprehensive process of consultation in future decisions around the drug appraisal system with patients, carers and patient organisations. NHS England and the Care Quality Commission should collaborate to: review, specify and monitor adherence to core standards in how information on waiting times should be recorded and reported by local NHS organisations. Improving waiting times for treatments is clearly necessary given repeated breaches of the NHS’ 18-week maximum wait from GP referral to treatment.xxviii The actions above are essential to provide the environment in which waiting times can be sustainably improved. 5. CONCLUSION The Patients Association wants to work with the NHS at all levels. NHS staff are supremely committed to providing the best care and treatment to patients. But as we have detailed, often important issues can get lost along the way. We want to celebrate where good care is provided, but also work in partnership with patients, frontline and senior NHS staff to make a better NHS for us all. We all deserve a system that is fit for patients, and fit for the 21st century. 6. CONTACT DETAILS For more information about the work of the Patients Association, please contact us: The Patients Association, PO Box 935, Harrow, Middlesex HA1 3YJ T: 020 8423 9111 F: 020 8423 9119 E: helpline@patients-association.com We also offer a helpline, which supports thousands of patients and relatives every year, answering concerns and queries about any aspect of the Healthcare system. This is a local rate number and if a phone provider charges, we are happy to return calls. The Helpline both informs patients and gathers their views. In addition, The Patients Association has several resources available on our website www.patients-association.com - providing general advice, the latest health news, reports, reviews and links to further information. How to Contact the Helpline: Our Helpline is open from 9:30am to 5:00pm Monday to Friday. If you want to speak to someone on our Helpline, please call on 0845 608 4455. If you would like to contact the Helpline via email, please email helpline@patientsassociation.com or use our online form on our website. 12 Patients Association – An health and care system fit for patients i NHS England (2014) NHS Five Year Forward View. Available from http://www.england.nhs.uk/ourwork/futurenhs/ ii Department of Health (2013) The NHS Constitution: The NHS belongs to us all. Available from http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx iii Department of Health (2013) The NHS Constitution: The NHS belongs to us all, p.5. Available from http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx iv NHS England (2013) CCG Outcomes Indicator Set 2014/15-at a glance, p.4. Available from http://www.england.nhs.uk/ccg-ois/ v Please see Patients Association (2014) Why our NHS should listen and be human, p.11. Available from http://www.patients-association.com/ vi Patients Association (2014) Why our NHS should listen and be human, p.5. Available from http://www.patients-association.com/ vii Patients Association (2014) Why our NHS should listen and be human, p.7. Available from http://www.patients-association.com/ viii See http://patients-association.com/Default.aspx?tabid=237 ix NHS England (2014) Overall patient experience scores 2014. Available from http://www.england.nhs.uk/statistics/2014/09/18/overall-patient-experience-scores-2014-communitymental-health-survey/ x Department of Health (2013) The NHS Constitution: The NHS belongs to us all, p.4. Available from http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx xi The Health Select Committee (2011) Inquiry into Complaints and Litigation: Volume 1, p.5. Available from http://www.parliament.uk/business/committees/committees-a-z/commonsselect/health-committee/news/11-06-28-clreoprt-substantive-/ xii The Patients Association (2014) Handling complaints with a human touch, p. 16. Available from http://www.patients-association.com/ xiii Francis, R. (2013) Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry Available from http://www.midstaffspublicinquiry.com/report xiv Patients Association (2014) Why our NHS should listen and be human, p.4. Available from http://www.patients-association.com/ xv Patients Association (2014) The ‘People’s’ Ombudsman: How it failed us, p.35. Available from http://www.patients-association.com/ xvi Patients Association (2014) The ‘People’s’ Ombudsman: How it failed us, p.37. Available from http://www.patients-association.com/ xvii Patients Association (2014) Why our NHS should listen and be human, p.4. Available from http://www.patients-association.com/ xviii More detail on further improvements to be made to the PHSO can be found in Patients Association (2014) The ‘People’s’ Ombudsman: How it failed us, p.38. Available from http://www.patients-association.com/ xix See The Patients Association (2014) Handling complaints with a human touch, p. 16. Available from http://www.patients-association.com/. The Charter is available here: http://www.patientsassociation.com/default.aspx?tabid=80&Id=2199 xx This would be in line with current proposals around an NHS Information Standard. See http://www.england.nhs.uk/ourwork/patients/accessibleinfo-2/ xxi For instance, looking at prostate cancer, see National Prostate Cancer Audit (2014) NCPA Annual Report 2014. Available from http://www.npca.org.uk/news/ xxii The Patients Association (2014) Why are we still waiting?: Annual report on hospital waiting times, p.1. Available from http://www.patients-association.com/ xxiii See National Audit Office (2014) NHS waiting times for elective care in England. Available from http://www.nao.org.uk/report/nhs-waiting-times-elective-care-england-2/ xxiv Department of Health (2013) The NHS Constitution: The NHS belongs to us all, p.6. Available from http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx xxv The Patients Association (2014) Primary Care: Access Denied?, p. 7. Available from http://www.patients-association.com/ xxvi Care Quality Commission (2014), State of Care 2013/14, p.6. Available from http://www.cqc.org.uk/content/state-care-201314 13 Patients Association – An health and care system fit for patients xxvii NHS England (2014) NHS Five Year Forward View. Available from http://www.england.nhs.uk/ourwork/futurenhs/ xxviii For example, see The Kings Fund (7.11.14) Will the 18-week waiting time target be met by the end of the year? Available from http://www.kingsfund.org.uk/blog/2014/11/18-week-waiting-timestarget THE PATIENTS ASSOCIATION STRATEGY 2015-2020 The purpose of the Patients Association is to campaign to ensure that individuals receive safe and effective care when and where they need it. The right care and treatment should be provided by competent, kind and compassionate health care workers whose knowledge is up-to-date and who acknowledge the need of all patients and their relatives to be treated with respect and dignity. We will continue to maintain our reputation as a reliable, strong and independent voice for patients and their carers. Our helpline will continue to be easily accessible for individuals to obtain advice, support and guidance on health and social care issues. The Patients Association will not only campaign on behalf of patients to influence health and social care policy but will also identify and disseminate best practice to organisations and government bodies. We will do this through our work directly with healthcare organisations and also through our publications. Where appropriate and relevant the Patients Association will form strategic partnerships with other organisations with a similar patient-focused ethos. We will continue to strengthen our links at Ministerial level and with other governmental bodies to ensure maximum impact and influence on health and social care policy as well as its delivery to ensure the highest standards of patient care. The Patients Association is a charity and as such is reliant on donations from the public and organisations to undertake its work. 14 Patients Association – An health and care system fit for patients