NHS England has been consulting on its ‘Generic Policies’. These are four related policies that describe how NHS England will make decisions on funding for treatments that are not currently routinely commissioned. These policies are the In- Year Service Development policy, the Individual Funding Requests policy, the Funding for Experimental Treatment and Unproven Treatments policy and the Continuing Funding After Clinical Trials policy.
The In-Year Service Development policy is used when clinical commissioning policies are developed or have changes made to them outside of the usual yearly commissioning round. Most often these are cost neutral or cost saving and not used to consider completely new medicines. The Funding for Experimental and Unproven Treatments policy covers funding for treatments that are considered experimental or have not had their effectiveness proven yet. The Continuing Funding After Clinical Trials policy details NHS England’s policy on funding for treatments for those who have been using a treatment as part of a clinical trial, when the trial comes to an end.
The individual funding request (IFR) policy allows patients to access funding for treatment that is not routinely commissioned. The Individual Funding Request policy has been of significant importance to many of Genetic Alliance UK’s members and the patients they represent.
We conducted a survey to understand how different groups have experienced the policy, and the impact that the policy has had on patients. Our response to the consultation uses insights from the survey responses to illustrate our position.
Currently there are two broad categories of patient trying to access treatment through the IFR route. These are:
- Patient s trying to access a treatment that has received a commissioning decision, but the patient in question does not fit the criteria (either to access the treatment, or for a negative commissioning decision to apply).
- A patient trying to access a treatment that has not been considered for commissioning by NHS England or NICE.
One of the key issues with the IFR policy is that the latter category is unable to accessing the IFR process on the basis of ‘exceptionality’. There are also other substantial issues with the transparency of the screening process – a vast number of applications never make it to the IFR Panel that makes decisions on applications– and the communication with patients during the process.