The Individual Patient Funding Request (IPFR) process in Wales allows patients who fall outside the current commissioning arrangements for a treatment to access it, providing that making it available is cost effective for the NHS.
The system has been designed for patients whose treatment will not be evaluated through other commissioning routes, and is based on the principle of ‘exceptionality’. To show exceptionality, the clinician applying for the IPFR must establish the reason why the patient in question is different from the broader patient community who the IPFR decision does not apply to.
Many treatments required by patients with rare conditions have not been evaluated by the National Institute for Health and Care Excellence (NICE) or the All Wales Medicines Strategy Group (AWMSG) and have no commissioning policy arrangement in place. There has been no decision to establish the scope of access for these treatments. The only option for patients in this situation to access the treatment is to make an IPFR application, using a system that is not designed to deal with their situation.
The last review of the process recommended that the All Wales Toxicology and Therapeutics Committee (AWTTC) should identify cohorts of patients making applications for the same treatment in order to trigger a One Wales Policy for making the treatment available. Whilst this promotes consistent access, in practice, it is not clear how often this is happening and what the timescales are for patients being able to access a treatment through this route. Clinicians continue to use the IPFR process as a route for accessing nonappraised medicines.
In our response to the consultation we recommended that:
- The ‘exceptionality’ criteria should be used flexibly for all applications made on behalf of rare disease patients
- IPFR application decisions should balance the cost of a treatment against the health and financial benefits that could be achieved in the long-term
- The IPFR Panel should not be able to disregard the views expressed by individual patients and their clinician when coming to a decision about an application
- The IPFR Panel should be able to take into account how an individual’s condition is affecting their day-to-day life when making IPFR decisions
Read the full response for further detail. If you have any comments or questions about the work please contact our Policy and Engagement Manager in Wales, Emma Hughes.
There is currently a consultation running in England looking at NHS England’s Independent Funding Request (IFR) policy which is the England only version of the Welsh IPFR – look out for our work on this in the coming weeks.