How would you spend the health service budget?

Involving the public in policy-making is not easy. A Citizens' Jury could offer the NHS a solution, writes Nicholas Timmins
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The Independent Online
"We've been here for four days, and I don't think I would be in a position to make an intelligent, informed and educated decision about anything."

It's not surprising that Phil Maynard feels confused. It's not every day that a 44-year-old shop manager is given the task of deciding how the NHS should spend its money.

Phil is not alone. There are 15 others who share the task. They are on a Citizens' Jury, asked to decide the health service's priorities. Usually doctors and politicians do this job and we moan when they get it wrong. But when we take on the responsibility, how do we fare? Could such panels really play a useful role in deciding public policy?

What share of NHS spending should go on effective treatments for non- life threatening ailments such as hernias and hip replacements, rather than on uncertain treatments for more threatening conditions such as childhood cancer?

The people in the room know all about the last question: this Citizens' Jury is assembled in Huntingdon - where Cambridge and Huntingdon Health Commission famously refused treatment to Child B.

For four days, spread over a week, the jury wrestles with the issues. It interviews witnesses ranging from Ron Zimmern, the authority's director of public health (unrepentant over the authority's decision on Child B) to a cardiologist presenting the pros and cons of different pacemakers. Jurors see patients who have benefited from both complex and simple treatments, and a GP fundholder who wants the public and patients to carry the can a bit. "Why on earth," he asks, "should I be making all these bloody difficult decisions about priorities without any help from you lot?"

Leading figures from the Royal College of Physicians and the National Association of Health Authorities contest the case for having a national framework for priorities or leaving choices entirely to doctors and managers.

Involving the public in decision-making is not easy. The Cambridge and Huntingdon Commission has tried harder than most. It has held patient discussion groups. It publicises its purchasing plans and recently organised four public meetings to discuss them. At one meeting two people turned up and at another about 40 - although only two of them, Dr Zimmern calculates, were not from patient pressure groups. The local Multiple Sclerosis Society, for example, may be adamant that pounds 10,000 per patient should be spent on Beta-interferon, a new drug that reduces the frequency of relapses but does not overall slow the progress of the disease. The public, he argues, might feel the pounds 150,000 the authority will spend on that this year would be better allocated to hip replacements, cancer treatment or other proven therapies. He wants help on such questions but the public isn't keen to oblige.

In a health service where authorities are appointed, not elected, how is the public's voice to be heard? The Citizens' Jury is the latest attempt to bring in the public's voice. It is funded by the left-leaning Institute of Public Policy Research, the idea's chief advocate in Britain.

This first attempt enjoys mixed success. The jury struggles hard to understand how the NHS actually works, let alone how it should work. Even when offered all the levers of power, the jury doesn't want to take them. High regard for expert opinion - doctors, managers, public health specialists - remains.

The jury opts - by 15 to 1 - for the public to be consulted and for a national framework for priorities. But 14 out of 16 would prefer guidelines, rather than binding directives that this or that treatment should be completely excluded. Local flexibility, both for purchasing authorities, doctors and individual cases remains key. The jury believes proven treatment for relatively minor ailments should take the bulk of the budget - 60 per cent - but money should still go on the uncertain and heroic. Otherwise today's experimental treatment would never be tomorrow's routine.

By the end, Dr Zimmern - who argues that "there are no right or wrong decisions, only legitimate decisions" - is impressed. "This does look like one way of getting feedback of the public view into the commission, rather than just the view of pressure groups," he says. He suspects it would be of most help for value-laden areas: for example, who should qualify for assisted conception where social as much as medical judgements may have to be made.

But a clear difference of view emerges over the influence such juries should have. Anna Coote, the IPPR's senior researcher, argues a jury should be given an explanation, if a commission rejects its recommendations. Dr Zimmern says that can't be done. The commission doesn't separately explain to the professionals why their view on something is rejected. It is the commission's statutory duty, he argues, to decide. In that case, Ms Coote, counters, how can anyone know the commission has taken the jury's view seriously?

It is an argument for another day. Dr Zimmern is left with a sense that a Citizens' Jury may indeed be an effective way of injecting the public view. "What I am not sure of," he says, contemplating a pounds 13,000-pounds 20,000 bill, which the commission has not had to meet, "is whether they are cost- effective, in terms both of the time and the money they take."