Sometimes, the clinician treating you may believe that you’d benefit from a treatment that isn’t usually available on the NHS.
If this is the case, they can ask the NHS in England to fund it on a one-off basis – doing this is known as an Individual Funding Request (IFR).
However, it’s important to understand that IFRs are only occasionally successful because there are a number of strict conditions that have to be met. It can also take quite a long time for a final decision to be made, which can sometimes be difficult for patients and their families.
IFRs only apply in England, but similar processes exist in Scotland, Wales and Northern Ireland. You can find out a bit more about these at the end of this Q&A.
Under which circumstances could my doctor apply for an IFR?
The clinician treating you can apply for an IFR if:
- they believe that your clinical circumstances are very different to other patients with the same condition, and
- they think there’s a reason why you’d respond better to the treatment in question compared to other patients with the same condition.
This is known as ‘clinical exceptionality’. You can find a few examples of clinical exceptionality on page 4 of NHS England’s IFR guide for patients.
Can I apply for an IFR myself?
Only clinicians can apply for an IFR, not patients or their families. However, if you’re aware of a treatment that you think may help you, discuss it with your clinician who can advise whether or not an IFR would be appropriate.
What happens once my clinician has applied for an IFR?
Your clinician’s IFR will go to NHS England.
First it will be screened to make sure that the application is complete and all the relevant information has been included.
Then it will be considered by an independent panel made up of doctors, nurses, public health experts, pharmacists, NHS England representatives and lay members.
It usually takes around 30 working days from receiving an application to a final decision being made. If your application is unsuccessful, your clinician should discuss with you the reasons for the decision and what other treatment options may be available.
In certain circumstances, your clinician may be able to request a review of the decision if they think that the process hasn’t been followed correctly. They must do this within 28 days of being informed of the decision.
I heard that NHS England changed its IFR policy?
The IFR process has existed for a number of years but in November 2017 NHS England made a few changes to the way it works. These include:
- simplifying the criteria that need to be met for a clinician to apply for an IFR, and making it clear that ‘clinical exceptionality’ is the most important factor
- recognising that age, in some circumstances, can be a relevant clinical factor
- accepting that it may be difficult for a clinician to produce evidence showing that their patient is likely to respond better to the treatment in question than other patients with the same condition (if a patient’s circumstances are truly exceptional, then this evidence may not exist).
Is this how second transplants are funded?
No – in February 2017 NHS England announced that they would fund second stem cell transplants for patients who relapse more than one year after their first donor (allogeneic) stem cell transplant.
This replaced their announcement in December 2016 that second stem cell transplants were ‘not currently affordable’. During this time, the only way to access a second stem cell transplant was for a clinician to apply for an IFR (or patients and their families to raise the money for the treatment themselves).
What has Anthony Nolan been doing to protect the rights of patients to access treatment?
In 2017, we campaigned for patients who relapse more than one year after their first donor stem cell transplant to have access to second transplants. You can read more about our ‘Defend Second Transplants’ campaign.
We are in regular conversation with NHS England, the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) to try to ensure that stem cell transplant patients have access to the best possible treatments.
Where can I find more information about IFRs?
For more information about IFRs, please visit NHS England’s website where you’ll be able to find:
- a 2-minute video about IFRs
- a detailed patient guide
- a ‘process map’, setting out exactly what happens when your clinician applies for an IFR.
How do things work in Scotland, Wales and Nothern Ireland?
If your clinician feels that you would benefit from a treatment that would not usually be available to you:
- In Scotland, they used to be able to submit an Individual Patient Treatment Request (IPTR), but this process was replaced by something called the Peer Approved Clinical System (PACS) Tier 2 in February 2018. The big difference is that cost-effectiveness is no longer considered, the aim being to enhance consistency across the country and remove any potential postcode lottery.
- In Wales, they can submit an Individual Patient Funding Request (IPFR) to your Local Health Board (LHB).
- In Northern Ireland, from June 2020 the new Individual Funding Request (IFR) Regional Scrutiny Committee has been making decisions regarding the availability of unapproved drugs for individual patients. This IFR Regional Scrutiny Committee was established by the Health and Social Care Board following a review and reformation of the IFR process.
For further information on IFRs contact your transplant team or email: patientinfo@anthonynolan.org
Information published: 22/04/2021
Next review due: 22/04/2024
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