CPAG made recommendations on 18 cost neutral or cost saving clinical commissioning policies, 2 in-year service developments, 24 proposed clinical commissioning policies for new investment in 2015/16 and 2 proposed service specifications that do not fall within the process for prioritisation in 2015/16 and which were considered by CPAG for the purpose of assurance.
While it is a positive step in that NHS England has finally started to prioritise the commissioning policies that have been developed over the past two and a half years, within the recommendations there isn’t much good news for the genetic and rare disease community. The recommendations highlight some of the problems within the funding process for treatments in England.
Genetic Alliance UK is particularly frustrated about the recommendations made on treatments for mucopolysaccharidosis IV type A and Duchenne muscular dystrophy. Both these treatments have not been recommended for routine commissioning, as CPAG decided to wait for a decision from NICE’s Highly Specialised Technologies (HST) evaluation programme. They have been appraised by NHS England and NICE in parallel, wasting time and resources, and building expectation within the patient community that has now been shown to be wasted. We have written in detail about this lack of rationalisation in our patient charter on NHS England’s evaluation process, you can find that here.
We shouldn’t forget that every day these decisions are postponed, patients are going without treatment. There are some positive recommendations for our members in that the risk threshold for BRCA (breast and ovarian cancer susceptibility genes) testing has been lowered, allowing more access, and the UK Genetic Testing Network recommendations for the commissioning of new genetic tests have been approved.
This is the last time that decisions will be made using this process, as NHS England will be evolving their prioritisation process as per the result of consultation last Friday.