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Health and Social Care Bill

moved Amendment No. 69: 69: Clause 134, page 89, line 12, at end insert— ““(2A) Each Primary Care Trust must publish a document describing its arrangements for managing applications to fund treatments which fall outside its commissioning policies.”” The noble Earl said: My Lords, I want to turn a spotlight on to an issue of considerable importance for NHS patients, and that is the issue of exceptional cases. What do I mean by an exceptional case? An exceptional case arises where a PCT receives a request from a member of the public or a clinician for a treatment which is not available through existing contracts or wider commissioning policies. There are several sets of circumstances where exceptional requests for treatment are likely to arise. One example is where new treatments being evaluated by NICE have not been explicitly funded in the operational plans of the PCT. Another is high-cost treatments for rare conditions. A third is where a treatment involves a drug where the requested use would be off licence. Recently a lot of the debate on exceptional cases has focused on drugs for the treatment of cancer but the situation also applies to a range of other conditions and it is clear that the issue will become much broader as more targeted therapies are developed which have smaller patient populations and which are at the same time more expensive. In 2005-06 Peterborough PCT received 156 applications for exceptional funding, of which 15 related to high-cost drugs, 13 to breast augmentation, 12 to pain management and 11 to orthopaedics. It is the duty of PCTs, when an application of this sort is received, to assess the merits of the request. Exceptionality is demonstrated by evidence that the benefit from treatment for a particular patient is ““significantly greater”” than the benefit which would accrue to a patient with a similar clinical picture. The Faculty of Public Health in an article published three years ago offered three grounds on which a patient can be considered eligible for funding. The first is where a particular development in a patient’s condition for which treatment is required is ““wholly unforeseen””. The second is where the treatment would ““avert a crisis””. The third is where the use of the treatment in a particular patient has such a major health gain associated with it that it is ““truly remarkable in its efficacy””. However, all these grounds are quite broad in nature. Given that PCTs are not allowed to issue blanket refusals on the funding of treatments, all PCTs are obliged to consider whether to provide funding whenever a request for an exceptional treatment is received. For this reason many PCTs, though by no means all, have established what can loosely be termed ““exceptional requests panels””. Where such panels exist, they tend to operate to certain protocols in assessing individual requests for treatment. The problem here is that there is no requirement for a PCT to publish its criteria for judging exceptional cases. In the absence of that requirement, members of the public do not know anything at all about the decision-making process. They cannot scrutinise it. That inability to scrutinise is often serious because, in reaching a decision on whether to fund a treatment, it is not uncommon for a PCT to rely on social criteria which, of necessity, involves making value judgments. Once you start doing that, you enter territory that is fraught with difficulty. For example, if a treatment is given to a patient who has young children over and above a patient who is childless, this involves a social value judgment which favours a lifestyle choice to have children. It is known that judgments of this sort are made, but without a request under the Freedom of Information Act about whether there is a panel—and that is sometimes not manifest—and what sort of social criteria are used, a patient cannot find out how he might be able to build up a convincing argument for why he should be able to receive a particular treatment. There is also a possibility that taking a decision on the basis of social factors could fall foul of the requirements of the Equality Act 2006, which outlaws discrimination on the basis of age and sex. The amendment is needed, therefore, to empower patients. It is needed to ensure that there is transparency in the way that PCTs make decisions to fund, or not to fund, exceptional cases, and it is needed to expose geographical variations in the way that requests for exceptional treatments are assessed. We know that in some PCTs there is a 50:50 success rate in exceptional applications whereas in other areas the success rate is virtually 100 per cent. So where differing criteria and procedures are used in different areas of the country, the postcode lottery that this creates would be made apparent. I hope the Minister will accept that there is a very real issue here which needs to be addressed. It would be most helpful if she were able to say something about the problems I have outlined and indicate whether she accepts that secrecy about the processes used to make decisions on the use of public money should be viewed as unacceptable in both principle and practice. I beg to move.