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Exceptional funding


6 June 2009


Primary Care Trusts (PCTs) not only have a fixed budget to provide healthcare to their respective populations, but also a statutory duty to break even!

Accordingly, they will not be able to afford every medical treatment available, and must make difficult decisions about what will be funded and what won’t.

In theory, this decision making process should be relatively easy, based on the principles of consistency, equity and transparency. It would seem obvious that PCTs should evaluate measures on the basis of their cost effectiveness (in terms of the benefit they provide relative to their cost) and their clinical effectiveness, in terms of the evidence available that support the use of the treatment.

In practice, funding decisions are inherently controversial. Where those decisions relate to “end of life” treatments, which the National Institute for Health and Clinical Excellence (NICE) have yet to evaluate, the implications for the patient and their family where funding is refused, are such that applications for exceptional funding are inevitable.

Most PCTs currently receive approx two to 300 applications per year for exceptional funding, which tend to concentrate around 50 or so drugs, of which a quarter are cancer related. Unfortunately, the decision making process for exceptional funding causes PCTs even greater difficulty, not least because they have recently faced a great deal of scrutiny from the Courts, the public and ultimately the Department of Health.

In R (on the Application of Ross) v West Sussex PCT (2008) [2008] EWHC 2252 (Admin) the High Court held that the principles used to judge “exceptionality” for funding had to be sufficiently fair to the individual that they did not have to prove that they were “unique”. In this case uniqueness would be impossible to prove since there would always be another patient who was appropriately comparable, especially when the comparison had wide criteria, e.g. are they the only patient with a particular type of cancer suffering intolerable side effects from the conventional treatment?

The Court ruled that once a patient had established exceptionality, a PCT still had to consider clinical efficacy and cost effectiveness, but should take a “less restrictive” approach to cost effectiveness, especially where matters of extending life were concerned.

Whilst the Courts are prepared to rule on the decision making process, they are not and have never been prepared to rule on whether a drug should actually be funded, simply stating that it is for PCTs to ensure that their process is legally compliant and then rule again on whether exceptional funding is appropriate.

So how do you get it right?

Applications for exceptional funding, by definition, require PCTs to compromise on the usual effectiveness criteria on which they evaluate treatments. They are additionally pressured to do so by the emotions of the patient and their family and the possibility of negative publicity, especially where some patients are funded and others not, or where other PCTs have funded all comparable patients.

Our health team have worked with a number of PCTs and have particular expertise in the following areas:

  • Ensuring exceptional funding policies are compliant with the latest law and guidance - there has already been guidance issued by the National Guidance Centre and Department of Health, as well as new statutory directions just in the first five months of this year!
  • Advising on how to deal sensitively with the individuals and families concerned as well as setting up an appropriate PR strategy to minimise the risk of adverse publicity
  • Advising on Freedom of Information Act requests, in accordance with the Data Protection Act, from individuals wishing to know why others have been successful in obtaining exceptional funding
  • Conducting risk analysis where decision making has been inconsistent and setting up a mechanism for fast-tracked repeat panel hearings
  • Advising on the make up of the Individual Case Panels and the appeals panel
  • Offering training using case based scenarios so as to ensure that the application of the ICR process is fair and the decision is transparent to the patient - reducing the risk of complaints and claims
  • Representing PCTs in Judicial Reviews of their decisions

talk to us


picture of Simon Tait
Simon Tait
0115 976 6559/0121 237 3913
Partner and Head of Health
   

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The content of this bulletin is provided for the purposes of general interest and information. It contains only brief summaries of aspects of the subject matter and does not provide comprehensive statements of the law. It does not constitute legal advice and does not provide a substitute for it.

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