What you can do if you live in Wales and treatment isn't available
Read this information if you and your cancer specialist think that you would benefit from a particular drug or treatment that has not been recommended for use on the NHS in Wales
Unlike England, Wales does not have a Cancer Drugs Fund for drugs that have not been approved by NICE.
Your GP or cancer specialist, or you with the support of your GP or cancer specialist, can apply to your local health board asking for the drug to be made available to you as an exception from its usual rules.
There is an application form, called an Individual Patient Funding Request (IPFR), which needs to be completed and submitted to the health board along with any supporting information. If you are making the application yourself, you can access support at any time during the process to help you make an application.
Applying to your local health board
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As part of the application, your GP or cancer specialist will need to demonstrate why they feel your request has exceptional clinical circumstances.
Your application should include:
your relevant medical history
details of the medical need for which the exceptional funding is requested
the expected benefits of the drug or treatment
supporting information and a summary of why the drug or treatment should be granted
details of any research or trial that supports the use of the drug or treatment in cases like yours.
There is an All Wales Individual Patient Funding Request Policy that outlines how decisions are made and the process for making them.
A patient leaflet explaining how to make an Individual Patient Funding Request (IPFR) is also available. You can download it from the Health in Wales website or from the website of your health board, and it should also be available in local libraries and GP surgeries. Each health board should have an IPFR coordinator, whose contact details will be available on the health board website and on the patient information leaflet.
The health board will reply to you, normally within 10 working days of receiving your request, to let you know what will happen next.
Your request will be considered by a special panel called the IFPR panel. It meets every month and consists of a mix of clinically qualified people, as well as a lay (non-clinical) member who does not work for the health board. All panel members have the expertise to assess the information and evidence that your doctor has provided.
Each request is considered on an individual basis, and all the information is treated confidentially. The panel does not see any information that will identify who you are. They follow a checklist when making their decisions and they do not consider the social circumstances of patients when deciding whether or not to approve a request.
The doctor who made the request on your behalf will usually be informed of the panel’s decision within five working days of the meeting. They will contact you to explain the decision and discuss what it means for your care.
If your request is approved, your doctor can usually prescribe the drug or treatment shortly afterwards.
If your request is denied and you and your doctor would like the decision of the panel to be reviewed, you should notify the health board within 25 working days of the date you receive the decision letter. Your doctor will have a copy of the review request form that you will need to complete together and send to the health board.
You can ask for a review of a decision if you feel that the panel did not take into account all relevant factors, or if you think the correct process was not followed. You can only request a review if your doctor supports your decision.
All reviews are heard by a separate review panel. If the review panel upholds the grounds for review, your request will be referred back to the IPFR panel to be reconsidered.
If you remain unhappy after your review decision, you can refer the matter to the Public Services Ombudsman for Wales, or you can use the NHS complaints procedure. You can also seek legal advice.