Top-ups: experts divided over health's thorniest issue

The only statement on which everyone weighing into the debate on drug top-ups and co-payments seems to agree is that the current situation is untenable.

Patients do not understand commissioners’ decisions on whether or not to allow them drugs that have received huge press coverage and the health service is depicted as a heartless bureaucracy.

As decisions are appealed and court cases stack up, the NHS is dragged into unseemly rows that threaten the systems and processes designed to help commissioners negotiate the minefield of incorporating expensive treatments into a publicly funded health service.

Who pays?

National cancer director Mike Richards has the task of reviewing what is arguably the NHS’s thorniest issue. He must sift through the responses to the Department of Health consultation on whether patients should be allowed to top up their care by paying for drugs not available on the NHS. At present, patients who pay privately for additional drugs forego the right to any free treatment.

Many organisations have negotiated extensions to the tight deadline, which passed two weeks ago. Some have questioned the wisdom of covering the issue in a short time over the summer holidays. Several have felt unable to reach an official view in the absence of their experienced policy brains.

But on the evidence of the submissions seen so far by HSJ, Professor Richards won’t find a consensus waiting in his in-tray.

The debate has become a rehash of long-standing ideological battles over the rights of the individual versus society and of corporate freedoms versus state control.

Fundamental views

In a private response to the consultation, which is to be followed up by a position statement, the King’s Fund outlines a “solidarity” view where top-ups are not allowed and an “individualist” view where patients can pay extra.

Both scenarios have problems. In the first, the think tank argues, the government would need to provide “political and legislative clarity”, explaining why top-ups were banned and defining “comprehensiveness” in the context of NHS provision.

In the second, it would need to address the cost of additional care, including the costs of administering privately funded drugs.

There should be clear rules about when top-ups would be allowed and whether patients would pay the full cost of a drug or the difference between its cost and that of the equivalent NHS treatment.

Sitting on the fence

The King’s Fund, which has not come out in favour of either side of the argument, warns that the inequities created by the “individualist” position would increase pressure to make cost-ineffective drugs available, and could undermine the role of the National Institute for Health and Clinical Excellence, which is not responding to the consultation.

The King’s Fund adds that whichever choice is made, a raft of supporting actions to improve the process will be necessary.

The think tank’s director of policy, Anna Dixon, explains: “The debate is a very difficult one because it does seem to challenge quite fundamental views about whether all care should be fully funded by the taxpayer.

“It may become easier as we’re clearer that the NHS is about funding care and will fund some forms of care and not others.”

The NHS Confederation has attempted to reach a consensus by setting up focus groups of its members, and has come to an uncomfortable conclusion.

Hard to resist

Director of policy Nigel Edwards says: “The whole topic seems to make people rather queasy. The overall view was we’d rather not have them [top-ups] at all but recognise that in certain cases, the argument is difficult to resist.”

Having accepted this point, the confederation’s focus groups decided that there should be strict stipulations. These include allowing top-up payments only for a “relatively narrow” range of treatments that had definitely been excluded by the NICE and would be administered simultaneously with other NHS treatments.

This would restrict additional expenditure for the NHS - such as doing follow-up work after a non-NHS drug has been administered - and discourage the creation of a top-ups co-insurance market.

But allowing this approach immediately raises one of the other spectres of the top-ups debate: can the NHS countenance two patients in adjacent beds, one of whom is receiving a newer treatment than the other because he or she can pay?

A large number of public health staff responding to the consultation said that in these situations, all care should be transferred to the private sector.

Compromising the NHS

The UK Commissioning Public Health Network has already warned that the review risks compromising the credibility of the NHS and said the “optimum” solution would be to clarify existing legislation and policy and provide guidance.

Mr Edwards says the consequences of allowing top-ups are hard to predict “and most of them are undesirable”. For instance, how do you collect fees from patients? Should clinicians be allowed to “ethically object” to providing treatment?

“Some of the issues around implementation are so tricky that you might want to go back to the original question and say you don’t want to do this,” he says. “Some of the things that have cropped up are truly hair-raising.”

He suggests that if payments are allowed an insurance market will spring up, and that some drug companies might be tempted to have drugs paid for at a higher price via this route rather than putting them through the NICE process.

The North of England cancer network, which covers an area affected by huge health inequalities, has come up with a very different answer to the problem.

Regional compromise

The network has suggested that part of the sting could be taken out of the issue by encouraging decision making on new drugs at strategic health authority level in advance of NICE guidance. This can take a while to appear, particularly when an appeal is lodged.

The network assesses around 10 drugs a year under its own system, loosely based on the NICE approach, and appropriate patients have been receiving new cancer drug Sunitinib for a year, while NICE guidance is yet to appear.

Network director Moira Davison says a national template for assessments could be drawn up to cut out regional inconsistencies.

She says: “We wish to strive for equity regardless of people’s individual circumstances. Additional payments would create a two-tier system. In terms of reducing inequalities, it’s a retrograde step.”

Patient rights

Groups representing patients are concerned that rights to NHS care must be protected. The Patients Association says denying patients who wish to co-pay for additional care or drugs is “reverting to the pre-1948 state of affairs”, adding that it is “wrong to elevate the system above the patient”.

Alzheimer’s Society head of policy and campaigns Andrew Chidgey says: “Our bottom line is that we think private treatment is a private choice for the individual.”

Both argue patients must not be cut out of the NHS if they go private for one part of their treatment.

The insurance industry sees an opportunity if top-ups are allowed.

Jonathan French, the Association of British Insurers’ life, health and protection insurance spokesman, says: “The industry believes it can be possible to enable additional payments for certain drugs to happen within the NHS in a way that’s fair and does not promote or encourage a two-tier health system.”

He says people would need consistent access to the NHS through an explicit national entitlement and that any choices to supplement this entitlement were real choices “genuinely affordable to the majority of people”.

The ABI wants a working party involving the Department of Health and the insurance industry to consider how it might work.

Insurance opportunity

Mr French acknowledges that allowing top-ups would provide opportunities for the insurance industry “quite self-evidently” but he adds: “We want to be absolutely certain that the underlying principle of the NHS as a free at the point of delivery health service is essential and that there is no element of creating a two-tier or two-speed health service.”

A British Medical Association spokesman said: “NHS resources will always be finite and governments might be tempted to use this as an excuse to limit NHS expenditure. This must not be a route to a further extension of user charges.”

In England the NHS is still a far cry from seeing patients turn up for treatment carrying a suitcase stuffed with banknotes, as described by one neurosurgeon employed in the US.

But whatever the end decision on top-ups, the face of the NHS will change as a result.

ADDITIONAL PAYMENTS: A POLARISED DEBATE

King’s Fund The decision should not be taken in isolation.

NHS Confederation In certain cases the argument is difficult to resist.

UK Commissioning Public Health NetworkClarification of existing legislation is the optimum solution.

North of England cancer network Top-ups are a retrograde step that will increase inequalities.

Patients Association Denying NHS care is a “pre-1948 state of affairs”.

Alzheimer’s Society Private treatment is a private choice.

Association of British Insurers Additional payments are possible without creating a two-tier system.

British Medical Association This must not be a route to a further extension of user charges.

Related links:

Simon Stevens on putting a price on life

NHS bodies voice fears on top-up payment dilemmas