This month the Rare Cancers Forum (RCF) published Taking Exception, the results of its “audit” of the policies and processes used by Primary Care Trusts to determine exceptional funding requests between October 2006 and July 2008. The data analysed were provided by 104 out of 152 PCTs in response to Freedom of Information Act requests made by the RCF.

Given the high cost of rare cancer drugs (which have often not been NICE-assessed and which PCTs have concluded are neither clinically nor cost effective), patients are largely obliged to pursue their requests for funding through their PCTs’ exceptional funding request procedures, hence the focus of this report.

The RCF found huge disparities in how these processes are managed in practice. An astonishing 15 per cent of responding PCTs reported having no written protocol governing the procedure, 6 per cent had no panel to process such requests, and 12 per cent of those prepared to provide such details stated that they had no clinical expertise within their panel membership. The audit revealed a whole host of definitions of “exceptionality”, from the greatly detailed to the utterly vacuous, some taking social factors into account and others not, with the time taken for panels to reach a decision varying from one week to twelve weeks.

In the light of its findings, the RCF recommended that:

• national guidance be published on how PCTs should make decisions on exceptional cases, including:

  • the need for a written protocol, including a clear definition of criteria for being “exceptional”;
  • panel membership to include at least an equal number of clinicians as administrators, as well as lay representatives and an odd  number of voting members to facilitate decision-making;
  • patients to contribute to/attend panels; 
  • social criteria to be taken into account, set out after Parliamentary debate; and
  • written decisions to be sent to patients.

• a clear timetable be laid down for decision-making, with a maximum of five days for urgent cases and a further five days for an appeal. All cancer patients to be considered as urgent cases.

With some PCTs receiving one request during the audit period, and others 180, some approving no requests and others every request made of them, the RCF is keen that the Department of Health should investigate why there are such significant variations between PCTs. Although the RCF is inevitably lobbying for an improved experience for its particular patient sub-group, it is important to ensure that all PCTs have robust policies and procedures in order to serve to improve matters for all patients needing recourse to such panels.

It will be interesting to see how the results of this report compare with the survey currently being undertaken by Deloitte. We understand that, nationally, work is currently ongoing in respect of a national handbook to guide PCTs through this difficult area and will report further on that in due course.