Wednesday 6 February 2013

We need a Parliament for Health

We need to look at how our democracy deals with health issues in response to the Francis Report into the terrible failures of care at Mid-Staffordshire  Hospital. This blog looks are why we need a 'Parliament for Health'; the next blog looks at what it would do and how it would work
The Francis Report, Ann Clwyd’s shocking description of her husband’s death “like a battery hen” in Cardiff’s University Hospital and the “hundreds and hundreds” who have writtento her are just the latest horror stories about failures in our health 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. 
But 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 and tobacco industries. Each of these present problems which cost many more lives and misery than mis-management at Mid-Staffordshire. The direct cost of health services are also a critical issue. Direct cost through taxes is about £1,700 per person per year, £106bn, and indirect cost of ill-health are about £100bn a year or another £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.
Many urgent issues need to be dealt with in our health services, some of which are strategic and many of which are local, in an area or institution. But it is decisions on strategic issues which 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, between personal and collective responsibility, or between environmental 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.
Since 1974 successive Governments have grappled with the complexity of preventative health, primary care, hospitals, nursing, social care, mental health, medical effectiveness, an aging population, rising costs and a myriad issues that affect our well-being. 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 successive 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 wider problems will persist and some will get worse because political attention and resource is 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 £8.81bn in 2011, except when mobilised to fight over a particular hospital, treatment or reorganisation.  
Whatever the rhetoric, the public only 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 from October 2012 HealthWatch. There is a tiny amount 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 also created joint consultative committees (JCCs) to promote joint planning between health and local authorities, but they did not have the power to be effective. Now the Government is setting up local Health and Well-Being Boards which will face similar challenges with 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 is set up the Nursing and Care Quality Forum for another burst of consultation. 
But neither Government nor Parliament have the time or capacity to give health matters the sustained scrutiny they need, or 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 “Parliament for Health” to grapple with the political issues in public. A Parliament for Health could have directly elected representatives (MHPs) or 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.
If the NHS were a country, its £106bn budget  would make it the 55th largestcountry in the world, about the size of New Zealand, Hungary or Vietnam in terms of GDP. It would have a seat at the UN – and it has one 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.  
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 elsewhwereare much more likely to have been raised by “Health MPs”, listened to and dealt with than the regulators who have clearly failed.
We do not need more inspectors – the most likely response to the Francis Report. David Cameron's proposal for 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.

[For more details of how a ‘Parliament for Health’ might work and contibute to democracy, see discussion paper on Citizen’s Policy Forums, at http://www.democracymatters.org.uk/wp-content/uploads/2012/12/Citizens-Policy-Forums-v12-5.pdf

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