"Following Anna Coote's essay on the need to move to a preventative health system we publish the below proposal, from Titus Alexander, on health parliaments.
The sound of a bedpan falling in Tredegar Hospital would resound in the Palace of Westminster" was how Aneurin Bevan, founder of the NHS, expressed his vision of democratic control over the health service. He did not mean Whitehall setting floor targets for falling bedpans or collecting statistics on bedpan utilisation, but that patients needs would be heard by the politicians responsible for their services. The Francis Report on Mid-Staff Hospital, Ann Clwyd’s description of her husband’s death “like a battery hen” in Cardiff’s University Hospital and the “hundreds and hundreds” who have written to her show the tragic consequences of not listening. “It is a significant part of the Stafford story that patients and relatives felt excluded from effective participation in the patients’ care.” (§1.17, p46) The public had “no effective voice – other than CURE – throughout the worst crisis any district general hospital in the NHS can ever have known.” (§1.23, p47) This is about more than institutions or culture, important as they are. It is about voice and power: who is heard, who is silenced and who, tragically, dies from deafness.
Just 14 of Francis’s recommendations refer to patient participation on boards or inspections, the accountability of commissioners, role of MPs and organisation of Local HealthWatch. These are useful, but cannot address the profound lack of democratic accountability and scrutiny in national health policy and provision. To address this, patients, carers and the public need both a stronger voice at the frontline, where services are provided, and at the very top, where the design, priorities and funding for health are decided.
Numerous inquiries such as Alder Hey, the Kennedy inquiry into deaths in Bristol Royal Infirmary and Healthcare for All into healthcare for people with learning disabilities have produced volumes of recommendations for changes in organisation and culture of health services, yet the problems persist because they cannot be answered by institutional measures alone.
As part of its response to the Francis Report, the Government and Parliament should create a National Health Forum to give organisations of patients, civil society and all other interests in health matters a powerful voice at the highest level, above the bureaucracy of the Department for Health and the NHS Commissioning Board, advising Parliament and the Minister on all health matters.
This paper makes the case for a “Parliament for Health” (or National Health Forum) and in part two shows how it would work to strengthen democratic scrutiny and accountability of everything that affects health.
The Francis Report and Ann Clwyd’s experiences are just the latest horror stories about failures in our health and care services. While every day thousands of patients get wonderful care and 90% are satisfied with their experience, too many people have a bad or even terminal experience through mal-treatment, neglect or hospital acquired infections. More bad news will be revealed as new inquiries are held, whistle-blowers defy gagging orders and patients tell their stories.
Our problems in health are much wider than issues of leadership, management and organisational culture of the NHS. How services are run is just the most visible part of health care, which includes the way we look after our own health, how we care for each other and the health effects of work as well as the food, drink, tobacco and other drugs we consume. Each of these issues present problems which cost more lives and misery than mismanagement at Mid-Staffordshire or any other hospital. Funding priorities and the allocation of resources also raise important issues. We spend about £1,700 per person per year on health services through taxes, £106bn in 2011. Indirect costs of ill-health are about the same, another £100bn a year or £1,600 each. Add to that the soaring cost of personal care, the lack of support for carers and the value provided by six million unpaid carers (variously valued at £23bn to £119bn), and we have a very complex picture for the state of health in Britain. If the NHS were a country, its £106bn budget would make it the 55th largest country in the world, about the size of New Zealand or Vietnam in terms of GDP. It would have a seat at the UN (it is represented in the World Health Organisation, WHO) and its civil service, the NHS Commissioning Board, Monitor and other bodies, would be answerable to citizens through Parliament. Instead, it is accountable to appointees answerable to the Secretary of State.
Many urgent issues need to be dealt with in our health services, some of which are strategic and others local to an area or institution. But decisions on strategic issues create the framework for the whole system and set the conditions which allow tragedies like Staffordshire and Cardiff’s University Hospital to occur. These strategic decisions are political, about the priorities, structure and funding for every aspect of health, including the balance between prevention and cure, personal and collective responsibility, or between environmental, societal and medical factors.
Health is one of many areas where our political system has failed for decades and Governments have kept people powerless to do much about it, as the experience of whistle blowers in the health service shows. Our centrally run health service gives Ministers the illusion of control, so we have had decades of ‘start-stop and start again’ health reforms which make it very difficult for people themselves to take part in creating better provision for health.
Successive Governments have grappled with the complexity of preventative health, primary care, hospitals, nursing, the cost and effectiveness of medicines, social care, mental health, an ageing population, addiction and myriad issues that affect our well-being. Since 1974 the NHS has been almost continuously reorganised in pursuit of better patient care, greater clinical leadership, devolved responsibility and less bureaucracy. The objectives have been largely consistent, but Governments have taken us on an expensive rollercoaster, plunging and twisting through GP Fundholding, Care in the Community, Family Practitioner Committees, Primary Care Groups, Primary Care Trusts (PCTs) and now Clinical Commissioning Groups (CCGs). While some interest groups (GPs, consultants, dentists) have done well out of this mystery tour, many others have not, the public is losing out, and the cost is enormous.
The Francis Report will be added to the shelf of recommendations and another transitory Government will give the NHS another shake. Some improvements may occur, if we're lucky, but many problems will persist and some will get worse because political attention and resources are elsewhere: when you turn the spotlight on one problem, the rest are left in the dark. Some things may get better due to lack of interference, while others get worse through neglect.
Most battles over health reform are among politicians and the professionals. The public is rarely involved in difficult debates about how to balance priorities between prevention, primary care, social care, hospitals or our £9 billion annual drugs bill (2011), except when mobilised to fight over a particular hospital, treatment or reorganisation.
Whatever the rhetoric, the public barely has a token voice in how we look after health as a society and how services are provided. Formal participation has been channelled through a succession of weak bodies, from Community Health Councils (1974-2003), Patient Forums (2004-8), LINks (Local Health Involvement Networks, 2008-2012) and now Local HealthWatch. There is a tiny amount of public participation through representation on health trusts, and more active involvement through fundraising, self-help groups, volunteering and charitable provision such as hospices, but these are largely excluded from decision-making. In many areas the voluntary sector, PCTs or local councils have set up forums for health and social care, which can comment on decisions but are powerless.
The 1974 NHS reorganisation created Joint Consultative Committees (JCCs) to promote joint planning between health and local authorities, but they did not have the power to be effective and were abolished. Now the Government is setting up local Health and Well-Being Boards which will face similar challenges and even greater financial pressures than those which undermined the JCCs in 1974 (see Health and wellbeing boards: system leaders or talking shops?).
When the Coalition Government ran into political difficulty over its health service reforms, it set up the NHS Future Forum, a group of health experts led by GP Professor Steve Field, but barely two or three of its 55 members represented patients or the public. It listened to more than 11,000 people face to face at over 300 events as well as engaging with people online, but then public involvement stopped. Then it set up the Nursing and Care Quality Forum for another burst of consultation.
But Ministers and Parliament do not have the time or capacity to give health matters the sustained scrutiny they need, nor to develop the political framework which balances all the different issues and interests involved in health and well-being. What we need, therefore, is a permanent “Parliament for Health” to grapple with these issues in public. A Parliament for Health could have directly elected representatives (MHPs) or be indirectly elected from local Health and Well-Being Boards and other stakeholder groups, with a majority of from civil society, to ensure that the people are in charge of the professionals, as it should be in a democracy. Part two describes how it could work in more detail.
If all health-related policy and legislation had been systematically scrutinised by “Health Parliament”, with a majority of representatives from patients and the public, feeding into the democratic processes of Parliament, governments would not have been able to lurch from one reorganisation to another. Sustained public dialogue between interest groups involved in health, including the public, is more likely to have created better patient care, greater clinical leadership, devolved responsibility, less bureaucracy and greater emphasis on public health, health promotion and well-being. Problems like those at Staffordshire, Cardiff’s University Hospital, Alder Hey, the Bristol Royal Infirmary, Great Ormond Street and elsewhere are much more likely to have been raised by “Health MPs”, listened to and dealt with than the regulators who have clearly failed.
An effective Health Forum would be more challenging than the countless consultations, advisory groups and forums run by Whitehall and the NHS, and probably cheaper to run. It could also be a place where issues are discussed frankly and in depth, bringing a wider range of knowledge and experience to bear on policy decisions. It could even make expensive inquiries like Mid Staffordshire, Healthcare for All or the Kennedy inquiry unnecessary, because it would give people a powerful platform above the bureaucracies, linked directly to Parliament.
How would a Parliament for Health work?
A representative National Health Forum within our system of Parliament could bring together representatives of stakeholders concerned with different aspects of health, including patient groups, staff, researchers, civil society organisations and elected representatives from other tiers of government, including parish and local councillors and MEPs. It could be co-chaired by back bench members of parliament from health related select committees. In time it could have directly elected ‘Health Representatives’ as part of a new kind of second chamber, bringing a wider range of experience and expertise into the political process. But MPs could set up a “Health Parliament” or Forum now, as an extension of the select committee to strengthen their oversight of health matters.
A Parliament for Health should have statutory rights to discuss all legislation that impacts on their health, to conduct investigations into the implementation of policy and report directly to the House of Commons through Member of Parliament (the Co-Chairs). It could have the following tasks:
1. Propose national priorities in health, for the NHS as well as public health;
2. Hold the NHS Commissioning Board, Monitor and other strategic health bodies to account on behalf of Parliament (which should have the final say);
3. Scrutinise the work of our representatives on the World Health Organisation, EU Council of Health Ministers, the Food and Agricultural Organisation (FAO) and other international bodies which influence health;
4. Promote dialogue round critical issues raised by the Francis Report, the Bristol Royal Infirmary inquiry and other investigations, and scrutinise their implementation;
5. Recommend priorities for research and development in health policy and provision;
6. Organise public consultation on proposals by the Government, taking consultation on major health matters from the NHS and Whitehall;
7. Pre-legislative scrutiny of proposed bills before they are presented to the Commons, to draw attention to health implications
8. Scrutinise and revise legislation through a “public reading stage” before the second reading in Parliament;
9. Contribute to consensus building, where appropriate;
10. Advise and assist on policy implementation;
11. Monitor implementation of all policies that affect health;
12. Review and evaluate the impact of legislation.
Failures in the NHS are symptoms of Parliament's inability to exercise democratic oversight and accountability of health services. The Health Select Committee does an excellent job, but it does not have the time to address the vast range of issues and variety of institutions which make up health provision. A Parliament for Health (or National Health Policy Forum) could dramatically increase the knowledge and experience to inform health policy-making. The Forum would be a permanent consultative body, with part-time members, elected for perhaps seven years, longer than a Parliament.
To increase public access and participation, most of its work could be done through a mixture of working groups, open public meetings and online forums. The whole Forum could meet to conclude a “Public Reading Stage” of relevant legislation, to discuss major issues like those raised by Mid-Staff Hospital or contentious policy areas like addiction, obesity or hospital reorganisations.
A Chief Health Inspector may be a useful lightning conductor for failings in future, but what will make most difference are the hundreds of thousands of inspectors who go into the NHS every day - patients, their families and frontline staff. They are also the people who will make most difference to the health of the nation, in homes, workplaces, shops and streets as much as in doctors’ surgeries and hospital wards. We are the people who determine what happens to our health, and we need more democratic accountability from bottom to top to make sure that health services and support meet people's needs with care.
If the Government wants to address the deeper issues in health, it needs to look beyond the institutional matters raised by the Francis Report and give the public, patients, professionals and researchers a forum to scrutinise everything that concerns health and wellbeing to support the Select Committee system and strengthen our Parliamentary democracy and our health.
Titus Alexander, Convenor, Democracy Matters, writing here in a personal capacity