Penalties Scrapped for NHS Top Up Fees

Patients who pay privately for extra medicines will no longer have their right to NHS care taken away, Health Secretary Alan Johnson announced today.

The Department of Health said it was also looking to ensure more drugs were available on the NHS.

Current rules have meant that if patients choose to pay for treatment that is not freely available, they should be excluded from the NHS. However, some NHS trusts have chosen to ignore this advice and NHS trusts have also made different decisions about which treatments are available on the NHS, leading to a postcode lottery for some patients.

In June, the Secretary of State asked Professor Mike Richards CBE, the so-called "cancer tsar", to lead a team to carry out a review examining if, when and in what circumstances patients should be able to purchase additional drugs that are not funded by the NHS.

Professor Richards said in his report that:

"At the heart of the issue is the tension that exists between the principles of equity –that every person should have access to health services based on their need and not on their ability to pay – and personal autonomy – that people should be free to spend their money as they choose. This tension has existed since the NHS was founded 60 years ago, and the issue of unfunded drugs is simply its latest iteration."

The Government set Prof Richards what he called "a deliberately challenging timescale for the Review" and after a 4 month review he has produced a 75-page report, including 14 recommendations for the Government.

Ministers accepted all 14 of Professor Richards' recommendations and the government's proposals are being put out to consultation until the end of January.

FibroAction founder and chair Lindsey Middlemiss welcomed the announcement and was today quoted on independent radio news across the UK saying that patients should not be penalised if they choose to pay for additional healthcare.

Many other national charities and patient groups also welcomed the announcement, but critics said that it could mean a two-tier NHS.

The announcement today means that top-ups will be allowed, but only under strictly regulated conditions if the proposals are agreed to. The package of measures has been designed to ensure that all costs associated with additional top-up treatments - from treating side effects to carrying out extra tests - are paid for by the patient.

The recommendations set out in Prof Richards are as follows:

Recommendation 1: The measures the government is already taking to improve the timeliness of the NICE decision making process are extremely welcome and should be strongly supported. The Department of Health and NICE should publish an update on the timelines for delivering these important commitments.

Recommendation 2: The Department of Health should urgently consider how PCTs can be encouraged to work together to make proactive commissioning decisions. Consideration should be given to whether collaborative processes already developed, such as in the North East for cancer drugs, could be used as a model.

Recommendation 3: The commitment made in the draft NHS Constitution to ensure transparency in PCT decision making, and the resulting work being undertaken by the Department of Health to support PCTs in delivering this, is extremely welcome. The government should set out as soon as possible more detailed plans for how it will achieve the commitment in the NHS Constitution, including the timescale for this work.

Recommendation 4: In developing collaborative arrangements for decision making, the government should also consider how PCTs can be better supported to make decisions on funding off-label drugs, whether as a matter of policy or on an exceptions basis.

Recommendation 5: The Department of Health should work:

• ...with NICE to assess urgently what affordable measures could be taken to make available drugs used near the end of life that do not meet the cost-effectiveness criteria currently applied to all drugs; and
• ...with the pharmaceutical industry in the context of the current Pharmaceutical Price Regulation Scheme (PPRS) negotiations to promote more flexible approaches to the pricing and availability of new drugs. This will require partnership working with the pharmaceutical industry and greater flexibility in approach from all parties.

Recommendation 6: The Department of Health should urgently undertake further work to investigate the extent and causes of international variations in drug usage.

Recommendation 7: The Department of Health should clarify the policy on how the NHS should handle situations where a patient wishes to purchase additional treatment. The objective should be to ensure consistency in practice across the NHS.

Recommendation 8: The Department of Health should make clear that no patient should lose their entitlement to NHS care they would have otherwise received, simply because they opt to purchase additional treatment for their condition.

Recommendation 9: The government should make clear that:

• ...clinicians should exhaust all reasonable avenues for securing NHS funding before a patient considers whether to purchase additional drugs;
• ...patients should be able to receive additional private drugs as long as these are delivered separately from the NHS elements of their care; and
• ...providers should establish clear clinical governance arrangements to ensure that patients who do elect to purchase additional private treatment receive good continuity of care.

Recommendation 10: Strategic Health Authorities, working where appropriate through cancer networks, should ensure that local policies are developed to ensure that any revised guidance issued by the government is implemented properly. This might include using a designated hospital with private facilities for all patients wishing to purchase additional drugs, making use of homecare provision or designating an area of an NHS hospital for the delivery of privately funded treatments.

Recommendation 11: The Department of Health should take a lead on commissioning a national audit of demand for unfunded drugs and on the outcome of treatments, working closely with professional organisations and NHS managers.

Recommendation 12:

• ...Doctors who are likely to have conversations with patients about treatments that are not routinely funded on the NHS should ensure that they have the necessary knowledge and skills to communicate complex information effectively and in a balanced way. This will help patients to make informed assessments about the balance of risk, cost and benefit involved in any potential treatment.
• ...The Department of Health should commission a training programme for clinicians to enhance the quality of discussion about these difficult issues.
• ...Relevant Royal Colleges should consider how assessment of communication skills could best be incorporated into recertification processes.

Recommendation 13: The Department of Health should consider how patients could best be given access to balanced written information on the benefits, toxicities and, where appropriate, costs of novel treatments, especially those given to patients near the end of life.

Recommendation 14: In responding to this Review, the government should confirm how situations where patients wish to purchase additional non-drug interventions should be handled.

The full report is available on the BBC website here.