NHS England has just concluded a 30 day consultation on a method to prioritise which treatments and policies will be funded in specialised commissioning for the 2016/2017 commissioning cycle.
In 2015 NHS England held a consultation on which principles should guide their approach, which we responded to at the time . This consultation was solely on a method of relative prioritisation, of how they will apply those principles.
We have written extensively on the topic of NHS England commissioning for rare diseases. As NHS England needs to evaluate those rare diseases medicines that NICE does not select for one of its appraisal routes, it is by default the primary appraisal body for rare disease medicines. For this reason it is of vital importance to patients with genetic and rare conditions that the process by which NHS England decides which commissioning policies, put forward by the Clinical Reference Groups, will be commissioned using the limited funding available, is transparent and fair.
In our response we accept that the proposed process of positioning each commissioning policy on a cost vs. effectiveness matrix seems a reasonable approach to compare competing funding priorities. However, we are concerned about the lack of clarity and accountability on how decisions are made about the positions of each policy in the matrix to position each policy. For example, it is necessary to be clear on how terms including cost and benefit are defined, and the application of the principles.
The cumulative effect of these multiple issues is that the proposed method de-prioritises treatments for rare conditions, an aspect which has been acknowledged by senior staff at NHS England. We suggests a few small changes to the proposed method and slight shifts in focus, so that commissioning decisions will be made in a rational and consistent manner, and without exacerbating the health inequalities currently experienced by patients affected by rare diseases and their families.