Comment / A case for top-ups

There are legal, ethical and practical issues to be resolved, but the case for allowing top-ups still stacks up.

Currently the Department of Health is consulting on the difficult topic of top-ups. This covers the ability of individual patients to pay privately for a non-NICE recommended drug without it impacting on their entitlement to NHS treatment.

At the moment if a patient opts to pay for such treatment then, technically, they should be denied the whole of their ‘free’ NHS entitlement. This has led to further allegations of a postcode lottery in the NHS where some PCTs have been prepared to pay for some of the new drugs. It also puts our clinical colleagues in an extremely difficult position.

Personally, I am convinced that top-ups should be allowed. It is not a straightforward issue. But exclusions on the NHS ‘insurance’ policy already exist. PCTs already operate an evidence-based exclusion list. And we have been paying top-ups on dental treatment and to opticians for years without comment.

Top-ups for cancer therapies are clearly more emotive as most of the current exclusions are not life threatening. But it is becoming increasing apparent that we cannot afford everything as an NHS, and why should we penalise people who wish to spend their own money on top-ups?

There is a danger of over complicating this issue. It seems to me that those who are literally fighting for their lives should, with the support and agreement of their clinicians, be able to try therapies despite the lack of a cost-effectiveness justification.

It is the bureaucracy that complicates the issue. The patient, together with the oncologist should be able to decide on the appropriate course of treatment. Often it is the increasingly internet savvy patient who identifies the alternative drug therapy. And although the consultant may advise that the result is unlikely to be different, they do not feel that they should be the ones denying the patient a last chance. This is especially true when funding is the issue and the money, albeit the patient’s, is available.

If top-ups are allowed then practical issues need to be considered such as how should costs be recovered? We have experience of similar systems. Payment needs to be upfront, as it is with IVF.

Having operated this system before, there is a clear understanding between the patient and the trust of why payment is being made and an understanding that treatment will not be given without payment. IVF is potentially as emotive as cancer although not clearly life threatening.

This is a controversial issue and not without legal and ethical issues. An area of concern is that NICE continues to assess treatments on ethical/cost effectiveness grounds and not on the basis that people will pay anyway. Ethical issues will not go away, but that does not mean we should not help those people who wish to exercise their right to make their own decisions. There are potential problems, for instance where patients respond to an off-NICE treatment, but run out of money.

It remains to be seen if the Prime Minister’s statement at the Labour Party Conference to improve access to cancer drugs can be fulfilled without completely undermining the principle on which NICE was established. However, any use of top-ups is going to have to be on a very clear, informed consent basis so that patients and their families understand what it is they are getting into. NICE is key here in making sure that the proven cost-effective treatments are available to all at the point of need.