There is no doubt that the decision to deny or withdraw treatment must be one of the most difficult faced by any health care professional. The NHS also has to make difficult decisions about whether or not to fund care and therefore to deny access to those who cannot afford to pay for the care privately. We still struggle to find ways of explaining this to the public in a way that they find acceptable. So when NICE indicated that it would not be recommending four new kidney cancer drugs for use by the NHS outrage was expressed not only by patients but also by professionals.
The challenge faced by the NHS is similar to that faced by other publicly funded health care systems around the world – there are limited resources and priorities have to be agreed about what to spend the money on. In other words we have to ration care.
This is not a new issue. Rationing has always gone on, just not so explicitly. Delays to treatment through waiting lists resulted in inequities, and meant that those who could afford to pay were seen more quickly in the private sector. Explicit denial is perhaps less palatable politically but it is right that more transparent criteria are used to decide who gets what.
As a consequence of NICE guidance an increasing number of drugs and procedures are explicitly excluded from NHS funding. This is in part why the issue of top-ups has arisen. Patients want to be able to pay privately for these unfunded drugs and treatments and still retain their entitlement to NHS care.
The King's Fund believes the current situation is untenable due to the lack of legal clarity and variability in the interpretation and application of current guidance. After much deliberation we have come to the view that in certain circumstances patients should be permitted to pay privately for drugs that have been rejected by the NHS on the grounds of cost-effectiveness and should retain their right to access the rest of their treatment on the NHS. However, we believe that the NHS should not subsidise this in any way, so patients should also pay for all the costs associated with the treatment that are over and above the cost of treatment they would have received on the NHS.
Allowing private funding for some care delivered within the same episode of care has practical implications that need to be thought through – for example clinical governance (we need to be clear about the risk and costs if there are adverse outcomes), ethics (we need a system to ensure patients are not pressured into paying for care), and we must ensure that as far as possible the patient pays for all the additional costs required for the administration of the privately funded drug (eg, more intensive nursing care).
However, any change in policy on top-ups needs to be set in the wider context of rationing and entitlements. The creation of an NHS constitution that sets out more clearly a patient's right to NICE-approved treatments may lead to demands to be explicit about exactly what patients can expect to receive from the NHS. The introduction of personal health budgets may also demand clearer guidelines about what services are eligible for spending. In the absence of NICE guidance PCTs have to decide what to fund, and in future they will need to be held accountable for how these decisions are taken. The current variability in the processes for reaching decisions are simply not acceptable.
The fact that many of the high-profile cases in the media relate to the denial of NHS funding for drugs for patients at the end of life is perhaps unsurprising. This has made the debate even more emotionally charged than it would otherwise have been. Mike Richards will need to keep a clear head and ensure that whatever he recommends to the government the rules are set out clearly and consistently so that patients, professionals and the public can understand in what circumstances individuals are able to pay for care and what are the consequences of doing so. The government also needs to be honest about what are the limits of the NHS, why such limits are necessary, how decisions are reached and on what evidence.