In this opinion piece, Julia Black, Head of Patient Support for KCSN, compares the old Individual Funding Request (IFR) system, which was included as part of the old Cancer Drugs Fund (CDF), with the new IFR process, which has been moved out of the new CDF process and is being controlled by NHS England:
As you might be aware, under the old CDF process, IFRs were considered under the CDF Standard Operating Procedure (SOP). Requests were considered by a regional CDF panel within timescales and a process set down in the CDF SOP.
Now, under the new CDF process, consideration of IFR requests has moved out of the CDF SOP to the NHS England Individual Funding Request route, which, as far as we are aware, hasn’t been through public consultation.
I have picked out the following issues which directly affect cancer patients reliant on the IFR process to access drugs:
Under the old CDF IFR – applications were considered within 13 working days
Under the new system – 30 working days
Under the old CDF IFR – applications went through a screening stage before being put forward to the CDF IFR panel; a 2-stage process.
The screening stage was contentious as applications were being refused at this stage, and not allowed to pass through to the panel on medical grounds. This was something that was flagged up to the CDF as an area that needed to be revised. Form our experience we found the screeners (maybe not medically qualified) were considering some rare cancers the same as a more common cancer, and refusing to even consider an application as an IFR on the basis that there was a cohort, even though the two cancers were very different (such as a treatment for ‘ocular melanoma’ being considered in the same group as melanoma, even though ocular melanoma is a very different disease).
Under the new system, applications now go through 3 stages, which is quite concerning:
- Administrative pre-screening
- The Screening Group (this stage takes up to 10 working days)
- The IFR Panel
Administrative pre-screening stage
At this stage the paperwork is reviewed to check that it is completed correctly etc.
But at this stage also: consider whether existing directly commissioned services would cover the requested treatment. This has the potential to cause an issue for rare cancers not being recognised as an individual disease, such as the example above.
The Screening Group stage
- The purpose of the Screening Group is to consider whether or not an IFR has made a sufficiently strong argument for the case to go forward to the IFR Panel for consideration. The Screening Group should only put forward requests for those cases where there is a reasonable prospect that the IFR Panel will approve the request, applying the criteria in the IFR Policy. This means that the Screening Group should consider whether there is a reasonable prospect that the IFR Panel will conclude that the patient is clinically different from other patients with the same condition in such a way that makes them especially likely to benefit from the treatment requested. It is evidence of this exceptional ability to benefit that the Screening Group is looking for when it considers requests.
This second stage has been inserted (will take 10 working days to consider) with a remit is to see if the application is likely to be approved by the IFR panel at the next stage. This makes no sense to me and is a duplication of work with an extra layer of administration – WHY?
There is no right to challenge the screeners decision, the only right is to ask for a reconsideration.
There is no way to bypass this stage if you do not agree with the outcome.
The IFR Panel
If an application is lucky enough to make it through the previous 2 stages then it goes before an IFR panel.
Previously the CDF IFR panel consisted of:
A clinically-led Regional CDF Panel comprising of specialist oncology (adult and paediatric) and haemato-oncology clinicians and lay members (supported by non- voting public health, commissioner and pharmacist advisors) will commence consideration of each fully completed application on receipt.
The new IFR panel consists of:
- Patient and Public Voice Chair
- NHS England Specialised Commissioning Regional Clinical Director
- NHS England Specialised Commissioning Regional Director of Nursing
- Public Health Consultant / Specialist from an NHS England Specialised Commissioning
- Pharmacy lead from an NHS England Specialised Commissioning Hub
- NHS England Specialised Commissioning Regional Programme of Care Lead (2 attendees per panel) or equivalent from other prescribed services for Armed Forces, Health & Justice, or secondary dental services (as required)
- Patient and Public Voice members
The emphasis previously was on specialist oncology, but this is no longer the case.
Of course we don’t know how drugs will fare in the new CDF process as it is an unknown entity to us. We do not know how cancer patients will be impacted accessing drugs, but for those patients who cannot access drugs routinely, the IFR process is a lifeline.
There has been no consultation on this decision as far as we are aware.
At a meeting earlier this year on the new CDF, no decision had been made about the IFR process and it just seems to have been quietly sidelined out of the CDF.