Cancer52 has responded to the above consultation (January 2017). The full response can be found here.
The consultation covers four areas of commissioning
General commissioning policies
In-year Service Development Policy
Individual Funding Requests Policy
Funding for Experimental Treatment and Unproven Treatments Policy
and seeks a ranking on both the clarity of the proposals and then asks for more specific feedback.
Overall we found the proposals to be unclear and believe there are a number of areas where patients with rare and less common cancers would be additionally disadvantaged. This includes where rare and less common cancer treatment procedures and treatments are being withdrawn, and concerns about availability of expertise in decision making where there may be less data available.
Said Kate Morgan, member of the policy group for Cancer52 and lead on this consultation, "We have a number of concerns across these four very complex and diverse areas, especially with the extra challenges of ensuring that there aren't additional difficulties to be faced by people with a rare or less common cancer. Specifically we have deep concerns around the transparency of the process around the Individual Funding Requests (IFR) as Cancer52 members have seen a wide-range of subjective and unclear decisions being made on IFRs, particularly relating to any rationale for turning them down. We also question the appropriateness of an IFR panel basing a decision on what might be an arbitrary figure based on an assessment of cost-effectiveness that may not be robust."