The New Statesman Special Report - Milburn eats up patients' rights
How well does the NHS treat its patients? In the wake of recent controversies, Anthony Browne looks
It sounds so good when it trips off his lips. "The patient's voice does not sufficiently influence the provision of services," he declared. "We believe that patient power is the most important way of raising standards of care, cleanliness and convenience across the NHS," he intoned. The Secretary of State for Health, Alan Milburn, has made it clear time and again that he is the ultimate patients' champion. The "new NHS" would be a service for us, not for doctors.
There is no doubt that the NHS needs to be more patient-centred. It is not just the food left so far down the bed that sick patients can't reach it, the appointments set at the doctors' convenience not yours, or the filth and the peeling paint.
The NHS is so not patient- centred that it failed to notice when a doctor murdered around 300 of his patients, and it allowed a heart surgeon in Bristol to continue killing babies while local GPs dubbed the hospital "the killing fields".
Yet despite his protestations to the contrary, the Health Secretary is eroding "patient power". He is getting rid of those who stand up for patients, abolishing the written rights they have and overriding the ability of doctors to protect them.
Little of this has been reported, because Milburn, one of the most media-savvy Cabinet ministers, has been adept at making sure it isn't. Last month, for example, he abolished the Patient's Charter (the one document that sets out patients' rights) in such a silent way that only two lines about it appeared in any newspaper.
Disillusion now afflicts patients' groups, which were initially so optimistic about Milburn. Vanessa Bourne, the chairman of the Patients' Association, said: "The rhetoric doesn't match the reality in any of this." Joyce Robins, the founder of Patient Concern, agreed: "The position of patients is getting a lot weaker, not stronger. Milburn's getting away with a lot."
Even doctors' groups feel compelled to stand up for patients. The British Medical Association - more used to criticising attacks on doctors - is now criticising attacks on patients' groups. The former head of ethics at the BMA Dr Fleur Fisher insisted: "It's not patient-centred. It's state-centred centralism." Even the General Medical Council - which usually disciplines doctors only if they are from ethnic minorities, have been exposed in the media or have been confirmed as the world's most prolific serial murderer - has jumped to the defence of patients' rights against Milburn's onslaughts. Indeed, the GMC, infamous for seeing patients as inconveniences, is now emerging as the only guardian of some of their rights.
The biggest blow to patients' rights is the imminent abolition of the community health councils. They are the only statutory patient watchdogs, thoroughly independent, with various legal powers. If you have trouble with your hospital or consultant, they are there to help you argue your case. They are underfunded and some underperform, but their effectiveness is shown in their track record. They were pivotal in helping both the Alder Hey parents uncover the truth about their children and the relatives of the dead to nail Harold Shipman. They led to the downfall of the rogue gynaecologist Rodney Ledward, who butchered hundreds of women. They also produce those officially annoying reports that show that very sick octogenarians often wait for days on trolleys in Accident & Emergency wards.
Most health analysts believe that the community health councils should be beefed up, but Milburn decided to abolish them, without any consultation and without any warning. He simply slipped it into last year's national plan for modernising the NHS. When I interviewed Milburn on the eve of the plan's release, he proved how patient-friendly he was by waxing lyrical about a new patient advocacy service he was going to launch in every hospital, and conveniently failed to mention he was abolishing the councils.
But there's a problem with the proposed patient advocacy services: they are simply customer service departments of hospitals, good for getting an extra blanket or hot food, but hopeless for tackling institutional problems or redressing abuse by doctors. Set up, employed by and housed in hospitals, they are hardly likely to take them on. As Donna Covey, the director of the Association of Community Health Councils for England and Wales, said: "Getting rid of the CHCs won't get rid of the problems of the NHS, but it might make them more difficult to detect."
The abolition of the councils, currently passing through parliament, has provoked such a rebellion among Labour MPs that the government has been forced to rearrange some deckchairs by introducing a few more groups - such as patient forums, which will be powerless and ultimately controlled by the Health Secretary. David Hinchliffe, the Labour chairman of the health select committee, became so despondent that he laid down an amendment to the Health and Social Care Bill to retain the councils. The National Assembly for Wales decided to keep them.
If it were just the health councils, you could forgive Milburn for one very bad, if devious, mistake. But the attacks on patients' rights only start there. John Major tried to strengthen patients' hands with the Patient's Charter, which did at least set out what you, as a patient, had a right to. Labour originally decided to dilute the charter because it "made staff more defensive". More token consultation took place to reform the charter, but even that led to a report which was too patient-friendly, so it was simply abolished.
It was replaced by the patronising waste of paper called "Your Guide to the NHS". In this, you don't have any rights at all, but mere "expectations". Before, you had the right to choose a consultant of your liking, and to a second opinion if you were unhappy; now, you don't. Instead, the guide lectures patients on their responsibilities to the NHS: "Care for yourself when appropriate. Treat NHS staff with respect. Keep your appointment. Return your equipment." The worst guff is in its instructions about how to stay healthy. "Don't smoke. Eat a balanced diet. Practise safer sex. Be safe on the roads and follow the highway code."
When it comes to rights that have been officially abolished - such as the right to a second opinion - you often now have to rely on the General Medical Council's advice to doctors. The GMC has guidelines instructing doctors not to release a patient's confidential medical records to a third party without the patient's consent. That "golden rule" is now being thrown out by Milburn - again without consultation. He is putting legislation through parliament enabling him to compel doctors to give patients' records - identifying them and their life histories - to medical researchers, even if the patient doesn't want it and the doctor insists it is not in the patient's interest. Milburn justifies the move by saying it is in the "common interest", helping to produce better medical statistics. But a patient with a socially stigmatised illness may see it differently.
Milburn has also refused to do many simple things that would empower patients. He hasn't stopped GPs from striking patients off their list if they lodge a complaint. He hasn't ended self- regulation in medicine. He has refused to provide information that would allow patients to make a more informed choice about where they are treated and by whom.
Why is Milburn acting like this? His abolition of the community health councils is so bizarre that medical circles are reduced to speculating about it. Some call it a "whim", others a "vendetta": there is even a rumour that a chief officer of one health council once ran off with one of his girlfriends. But the real reason lies in his excuse for ripping up the rules on patient confidentiality: the utilitarian justification that it is for the common good. Milburn has a top-down view. As Will Anderson of the King's Fund think-tank says, "it's what the centre thinks patient-centred is about, not what patients think that patient-centred is about".
Milburn sees himself as the chief executive of the world's largest employer outside China. He has a virtual state monopoly on health provision, with a command-and-control mentality hanging over from the days when he sold Marxist books: set targets, hundreds of them, tell the minions to work, and they shall be delivered.
The NHS will earn the respect it needs to recapture only if it works from the bottom up, balancing the powers of patients against the medical establishment. The NHS can survive only if it respects the rights of each and every patient; if it lets patients make an informed choice about the quality of treatment they are going to receive; if patients' grievances are dealt with fairly; and if patients don't have to spend what little energy they have battling through NHS bureaucracy, intransigence and opacity.
Unfortunately, little that Milburn has done will improve patient power in any of these ways.
Anthony Browne is the health editor of the Observer