Individual funding request

The IFR process only applies to services paid for (commissioned) by NHS England. If the treatment is paid for by the integrated care board (ICB) within your integrated care system (ICS) area, they will consider your request through their own local processes. Your clinician will know which organisation to send the request to.

When can an IFR be made?

In England, an IFR can be made if:

• the clinician treating you believes that your clinical circumstances are ‘exceptional’, this means that they’re so clearly different to another person with the same condition that you should have this treatment paid for by the NHS when others wouldn’t, and
• they think you would respond differently and benefit more from the treatment than others with the same condition.

Individual funding requests are made on a case-by-case basis. They can’t be used to try to make a case for providing the treatment to a larger group of people in a similar situation. If there are other people who might benefit from the treatment in a similar way, then your clinician should request that NHS England consider introducing it as a routine treatment. If this request were approved, they could then make the treatment available to you.

Non-clinical factors, such as your ability to work/study, any caring responsibilities or financial commitments aren’t taken into consideration. Any decision is based solely on your clinical circumstances to ensure the process is fair, equitable and no-one is discriminated against based on their social, family or other circumstances.

Who can make an IFR?

They can only be made by a health professional. IFRs can’t be accepted directly from individuals. However, you can work with your clinician and have input into the process if it’s appropriate.

Who makes the decision?

Initially, NHS England reviews the application to make sure it meets the criteria, and all relevant information has been included. It’s then considered by an independent panel who aren’t involved with your care. The panel will include doctors, nurses, pharmacists and public health experts. There will also be representatives from NHS England and lay members. Lay members bring personal experience of using health services and represent the thoughts of patients and service users.

How long will a decision take?

Typically, a decision is made within 30 days. During the process, NHS England should keep in contact with your clinician to let them know how it is progressing and whether there are any delays. They’ll also let your clinician know the outcome of the request and you will be sent a letter. If your application is successful, you’ll be able to start the treatment.

What if my application is unsuccessful?

Your clinician should discuss with you the reasons for the decision and any other options that may be available.

What if I don’t agree with the decision?

Your clinician may be able to request a review of the decision if they think the process hasn’t been followed correctly. This must be done within 28 days of when you were informed of the decision.

Your clinician may also be able to submit additional information if your situation changes or more evidence about the effectiveness of the treatment becomes available.

The PACS tier two process was introduced in 2018, it replaced the Individual Patient Treatment Request (IPTR) process. The aim of the change was to make the decision-making process more consistent across the 14 regional NHS Boards which make up NHS Scotland.

When can a PACS tier two request be made?

In Scotland, applications can be made on a case-by-case base for an individual to their regional NHS Board to request the use of a licensed medicine that:

• has been considered for a condition but hasn’t been recommended for use in NHS Scotland by the SMC; or
• has been accepted for restricted use by the SMC but the intended use is outside those restrictions; or
• has been submitted to and is awaiting, or is currently undergoing, evaluation by the SMC.

Access to unlicensed medicines, medicines licensed for extremely rare conditions (known as ultra-orphan medicines), use of a medication for reasons outside of the marketing authorisation (off-label use), or medicines which haven’t yet been submitted to the SMC aren’t covered by the PACS tier two process. 

PACS tier two decisions are purely clinical decisions. The cost of the medicine isn’t considered.

Who can make a PACS tier two request?

They can only be made by a health professional on your behalf. Your clinician must also have the application reviewed by another NHS clinician with expertise in treating the condition the medicine is being requested for (known as peer review).

The peer review process is to ensure that all alternative medicines have been considered and deemed unsuitable and that your response to the requested treatment will be at least comparable to, if not better, than the population considered during the SMC decision-making process.

Who makes the decision?

Each NHS Board has a PACS tier two panel composed of clinicians including appropriate senior medical and pharmacist representatives. If you’re going through the PACS tier two process, you should be assigned a named individual chosen by the NHS Board to provide advice and support. This could be the clinician responsible for your care or another person. The panel will also consider the wider benefit to the NHS of the application. 

How long will a decision take?

A preliminary examination of the request is undertaken by the panel at which time the urgency of the request is taken into consideration and so timescales are determined on a case-by-case basis. When a decision has been made it should be emailed to the requesting clinician within five working days, they should make you aware of the decision in a timely manner. 

What if my application is unsuccessful?

Your clinician should discuss with you the reasons for the decision and any other options that may be available for your future treatment.

What if I don’t agree with the decision?

If appropriate, your clinician may be able to request a national review of the decision via the National Review Panel. In addition, if you’re not satisfied with the way the process was handled you can report this through the NHS complaints process.

In Wales, seven local health boards (LHBs) are responsible for developing and providing services based on the needs of their local community for NHS Wales. The Welsh Health Specialised Services Committee (WHSCC) is responsible for the joint planning of some services on behalf of the LHBs to ensure consistent, fair and equitable access to specialised services across all of Wales.

When can an IPFR be considered?

In Wales, an IPFR can be made if:

• the clinician believes your clinical circumstances are clearly different to other people with the same condition, and
• there’s a clinical reason why you would respond differently to the treatment to other people which means you would gain more clinical benefit.

You would also need to show that the cost of treatment is reasonable for your condition.

Non-clinical factors, such as your ability to work/study, any caring responsibilities or financial commitments aren’t taken into consideration. Any decision is based solely on your clinical circumstances to ensure the process is fair, equitable and no-one is discriminated against based on their social, family or other circumstances.

Who can make an IPFR?

The application must be made by a clinician on your behalf.

Who makes the decision?

IPFR applications are considered by an independent group, the all Wales IPFR panel, who’ve not been involved in your care. The panel acts as a sub-committee of the WHSCC and is made up of doctors, nurses, public health experts, pharmacists and lay members.

How long will a decision take?

The time taken will depend on the clinical urgency of your case. Typically, the request will first be considered by the IPFR Senior Officer. If it passes this stage, it will then be considered by the IPFR panel which meets at least once a month. However, clinically urgent cases can be considered outside the usual screening and panel process if the requesting clinician deems the case to be clinically urgent.

Once the IPFR panel has made their decision, they’ll send a letter to your clinician within five working days to let them know if your application was successful or not. You will also be informed by letter that a decision has been made, but not whether you’ve been successful or not, as it is felt that this is best discussed directly between you and your clinician. Your clinician should contact you directly within five working days of receiving the decision to discuss the outcome and the next steps.

What if my application is unsuccessful?

Your clinician should discuss with you the reasons for the decision and any other options that may be available for your future treatment.

What if I don’t agree with the decision?

If you and your clinician think the process hasn’t been followed correctly, they can request a review on your behalf. This needs to be done within 25 working days of the date of the decision letter.

If you request a review, a review panel will look at the case. The review panel cannot change the outcome of the original IFPR panel decision, but if they don’t think that the IPFR panel followed the process correctly, they can ask them to review your application again.

The review panel can’t consider any new information as part of the review process. However, if new information becomes available, your case can be looked at again by the IPFR panel.

If you’re still not happy after your review decision, you can refer the matter to the Public Services Ombudsman of Wales.

Northern Ireland Health and Social Care (HSC) is responsible for both health and social care services. There is one Health and Social Care Board (HSSCB) responsible for commissioning services which has five local commissioning groups (LCGs) which cover the same areas as their corresponding Health and Social Care Trust which provide the services.

When can an IFR be considered?

In Northern Ireland, an IFR can be made if:
•    the request doesn’t apply to a group of clinically similar individuals, and
•    you have a medical condition for which your particular clinical circumstances fall outside the criteria for the existing commissioning policy for funding the treatment
OR
•    the request is for a new intervention, or for an intervention to be used outside the licence, where no commissioning arrangements exist
OR
•    you have a rare clinical circumstance for which your consultant wants to use an existing treatment outside the licence, with your consent.

This policy only applies to individuals eligible for Health and Social Care services where the HSCB is the responsible commissioner.

Who can make an IFR?

A hospital consultant directly responsible for your care must make the funding request on your behalf. They can’t be accepted directly from individuals or general practitioners (GPs).

Who makes the decision?

Requests are considered by the Individual Funding Request (IFR) Regional Scrutiny Committee (RSC) which was established by the HSCB in 2020 to provide regional consistency. The RSC is made up of a group of clinicians from a broad range of specialties. All applications are subject to clinical input and peer review. The RSC will consider:

• whether you have significantly different clinical circumstances to other people with the same condition, at the same stage
• whether you would benefit significantly more from the treatment than others with the same condition at the same stage
• the relative cost of treatment and the likely benefit to you.

Non-clinical factors, such as age, marital or employment status, will not be taken into consideration.

How long will a decision take?

The RSC meets weekly to make decisions on non-urgent requests and aims to ensure as timely a response as possible to requests. There are procedures in place for more urgent requests. A detailed response to your clinician should be issued within a maximum of five working days of the meeting, but the RSC aim to respond within 24 hours where possible. It is your clinician’s responsibility to discuss the outcome with you.

What if my application is unsuccessful?

Your clinician should discuss the reasons for the decision and any other options that may be available for your future treatment.

What if I don’t agree with the decision?

Your clinician can make a request for an appeal if they believe the decision taken:

• did not follow the procedure correctly, and/or
• in their opinion was a decision no reasonable RSC could have reached.

If significant new clinical information becomes available at a later date, a new IFR can be submitted.