What you can do if you live in England and treatment isn't available
Read this information if you and your cancer specialist feel you would benefit from a particular drug or treatment not available on the NHS.
Your specialist may apply for funding through the Cancer Drugs Fund. The Cancer Drugs Fund has specific criteria that needs to be met and there is a limited list of drugs that will be funded. Your cancer specialist will know if you meet the criteria and whether the drug you need is on the list.
Alternatively, your cancer specialist can apply to your local Clinical Commissioning Group (CCG), asking for the drug to be made available to you as an exception from their usual rules.
In April 2013, CCGs took responsibility for healthcare across England. They bring together groups of GPs and other key healthcare professionals to commission services in their area. They receive a fixed amount of money from the NHS Commissioning Board to decide how resources should be allocated: including whether to fund particular treatments.
Find your nearest CCG.
In England, CCGs usually call these applications individual funding requests (IFRs).
Usually your cancer specialist will apply on your behalf. IFRs need to be made by someone who knows your medical situation well and believes that the drug or treatment will help control your cancer. They should make a written request, and many CCGs have specific forms for this. If you're too ill to be actively involved in the application, you can ask someone else to act on your behalf.
Each CCG should have a policy around IFRs. It’s important to read this before making an application. You can ask the CCG for this information or you may be able to find this on their website.
The request form should tell you who it should be sent to. If this isn't clear, the CCG can provide this information.
The CCG will consider different factors to help them make its decision.
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.
Some forms may ask for details of your personal circumstances. Ask your cancer specialist for a copy of the request. It's a good idea to keep a written record of all contact with the CCG.
In some cases, the panel will consider other supporting information from you.
You'll be sent a letter confirming that your application has been received. Your CCG should have all the relevant information at this point to be able to make its decision.
The decision about whether you'll be able to have the treatment will be made by the Individual Funding Request panel (who are part of NHS Commissioning Services). You can ask whether you can attend their meeting. It's likely this will include an opportunity for you (or your representative) and your cancer specialist to present your case or answer questions from the panel.
The Individual Funding Request panel will make a decision within a set period of time. This is usually between 4–8 weeks, but it may be sooner and it can vary around the country. When the CCG acknowledges your application, it may tell you when it will make its decision.
If your request is approved, your cancer specialist can usually prescribe the drug or treatment shortly afterwards.
If the request is denied, the reasons for this will be explained and you'll be told how you can appeal against the decision. There will be a time limit within which an appeal must be made (usually around a month). At this point, you and your cancer specialist can also ask for further explanation of the decision.
If you want to appeal, either you, your cancer specialist or your representative must notify the CCG in writing that you intend to do this. Some people have been able to get original decisions changed through appeal.
The appeal can include a letter of support from your cancer specialist. You or your cancer specialist should also explain whether your circumstances have changed since the original application.
Each CCG will have a timescale for hearing the appeal and informing you of their decision.
If your appeal is unsuccessful, you can't appeal again to the CCG, but you can use the NHS complaints procedure or write to the Parliamentary and Health Service Ombudsman. You can also seek legal advice.