The King's Fund's response to Department of Health review of additional private drugs for NHS care

The King’s Fund welcomes the opportunity to contribute to the Department of Health’s review of the consequences of additional private drugs for NHS care. The King’s Fund has raised a number of issues with the review team that will need to be considered by the government whatever choice of policy it adopts.

The King’s Fund believes the current policy and practice on top-ups, which prohibits people from privately purchasing drugs not available on the health service while continuing a course of NHS care, is untenable. There are areas of the NHS where there is inconsistency over patient charging, such as optical care and dental care, and current legislation does not provide clear direction to patients or the NHS about why these top-ups are allowed but others, for example the use of non-NICE approved drugs, are not.

In addition, the basis on which decisions are made locally as to whether drugs are available before they have received NICE approval or if NICE has rejected them, is not always clear. The rules that do exist are differentially applied and result in significant variations between primary care trusts (PCTs) in the decisions reached - precisely the situation that NICE was established to avoid. This situation is unlikely to be publicly acceptable and examples of the health service forcing vulnerable patients to lose out on their NHS funded treatment because they wish to pay for a drug themselves risks damaging the reputation of the NHS as a caring and compassionate service.

The difficult decision facing the government is compounded by the lack of available evidence on the numbers of people who could take advantage of any changes in the rules permitting top-ups, which we are assuming are small; the possible costs to the NHS; and the potential opportunity costs of using existing NHS resources in this way. We expect the government to collect and report such evidence in reaching its decision and assessing its impact.

The absence of such an evidence base makes any recommendation we make more difficult. However, after much consideration of what is undoubtedly a complex issue, The King’s Fund believes that in certain circumstances patients should be permitted to pay privately for drugs that have been rejected on cost-effective grounds and retain their right to access the rest of their treatment on the NHS. They should also pay for the associated treatment costs over and above the cost of treatment they would have received on the NHS.

The King’s Fund recognises there will be equity concerns raised by this as there will inevitably be some patients who can afford top-ups and some who cannot. This is an inevitable cost of this policy option. Therefore, if the government does take the decision to permit top-ups it should address the following issues and ensure safeguards are in place to minimise the risks of unfairness:

  • Identify and specify the circumstances in which top-ups are allowed – the review is focusing on drugs only but there are other procedures and therapies that present similar if less emotive issues.
  • Calculate the associated costs, such as the costs of administering a drug. If these costs were met by the NHS, this would mean resources being diverted from other NHS patients to support the delivery of a treatment that may have been judged to be not cost-effective by NICE. We propose that the patient should meet the associated costs over and above the NHS treatment they would already be receiving. These costs would have to be carefully calculated.
  • Ensure that individuals understand the financial liabilities they may face if they top-up their care – individuals with a terminal illness may feel they have little to lose by risking their resources on an expensive drug with relatively low efficacy but if the drug proves to extend their life they may find themselves unable to finance payments in the medium or long term. One way in which costs to the individual could be capped and cost effectiveness to the NHS assured would be to introduce a time limit for each drug after which the NHS would pay if sufficient levels of efficacy had been demonstrated for that individual. This decision would appropriately be taken locally on an exceptional basis of clinical evidence. However, further work is needed to establish how such decisions could be made in practice. In addition, patients need clear and impartial information about the clinical benefits of drugs, including the limitations, risks and possible side-effects which relate as far as possible to their situation.

Finally, The King’s Fund believes the government can use the opportunity created by the top-up debate to improve the way that new medicines – and by extension other forms of treatment – come into use. The present system is overly dependent on trial data supplied by the pharmaceutical companies that do not necessarily reflect the realities of clinical practice. We need a more systematic and ongoing appraisal of new drugs in both clinical and economic terms. The pharmaceutical industry has itself recognised that the introduction of new and expensive drugs must be handled in innovative ways. These measures might reduce the number of drugs that are excluded from NHS funding and would reduce the level of variation in the availability of non-NICE appraised drugs and treatments and reduce uncertainty for patients and the public.

Read our related background briefing: Top-up payments for drugs in England

Notes to editors: 

  1. For further information or interviews, please contact The King’s Fund press and public affairs office on 020 7307 2585, 020 7307 2632 or 020 7307 2581. An ISDN line is available for interviews on 020 7637 0185.
  2. The King’s Fund’s formal response to the Department of Health’s review of the consequences of additional private drugs for NHS care is available to download from our website. In addition, The King’s Fund has produced a background briefing: Top-up payments for drugs in England.
  3. The King’s Fund seeks to understand how the health system in England can be improved. Using that insight, we help shape policy, transform services and bring about behaviour change. Our work includes research, analysis, developing leaders and improving services. We also offer a wide range of resources to help everyone working in health share knowledge, learning and ideas.