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Macmillan and Cancerbackup merged in 2008. Together we provide free, high quality information for people affected by cancer through our publications, website and phone service. Find out more|.
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If you'd like to have a particular drug or treatment, you can apply to your Primary Care Trust asking for the it to be made available to you as an exception from their usual rules. PCTs usually call these applications individual funding requests (IFR).
Usually you would ask your specialist or GP to apply on your behalf. It needs to be someone who knows your medical situation well and believes that the drug or treatment will help control your cancer. They should make a written IFR to the PCT. Many PCTs have specific forms for these requests. If you're too ill to be actively involved in the application, you can ask someone else to act on your behalf.
The PCT will consider different factors to help them make their decision. It’s important to read about these before making an application. You can ask the PCT for this information.
The IFR form should tell you who it should be sent to. If this isn't clear the PCT can provide this information.
Your application should include:
Some forms may ask for details of your personal circumstances. Ask your doctor for a copy of the request. It's a good idea to keep a written record of all contact with the PCT.
Some people find it helpful to contact their local MP (Member of Parliament) for a letter to support their request.
There may be a national organisation for your type of cancer that is campaigning for a particular treatment to become routinely available. They may be able to give you further advice or put you in touch with other people who've been through this process, who can share their experiences with you and offer their support.
You'll be sent a letter confirming that your application has been received. Your PCT should have all of the relevant information at this point, so make sure you've included everything needed for your application.
The decision about whether you'll be able to have the treatment will be made by a panel of PCT board members. You can ask if you can attend their meeting. It's likely this will include an opportunity for you (or your representative) and your doctor to present your case or answer questions from the panel.
The PCT will make a decision within a set period of time. This is usually between 4–8 weeks, but it can vary around the country. When they acknowledge your application, they may tell you when they will make their decision. If your request is approved, your doctor can usually prescribe the drug or treatment shortly afterwards.
If the request is denied, the reasons for this will be explained and you will be told how you can appeal against the decision. There will be a time limit within which an appeal must be made (usually 28 days). At this point you and your doctor can also ask for further explanation of the decision.
If you want to appeal, either you or your representative must notify the PCT 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 doctor. You should also explain in your letter whether your circumstances have changed since the original application.
Each PCT 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 PCT, but you can use the NHS complaints procedure or write to the Health Service Ombudsman|. You can also seek legal advice. We have more information in our section on making a complaint|.
The UK government has created a special fund to help improve access to cancer drugs for people living in England. The fund is for drugs that aren’t routinely available on the NHS because NICE has either decided not to approve a drug, hasn't reached a final decision about a drug or hasn’t approved a drug for a specific type of cancer.
The fund doesn’t replace existing PCT funding processes and is only available after all other sources of funding, including IFRs, have been tried. The fund is coordinated on a regional basis by Strategic Health Authorities (SHAs). SHAs manage the NHS on behalf of the government.
Applications are made by a patient’s specialist or lead cancer doctor when, for example, they haven’t been able to access a clinically recommended drug.
Each SHA has a panel of cancer experts who make funding decisions based on the evidence provided by a patient’s cancer specialist, a patient’s individual circumstances and the cost-effectiveness of the treatment. Panels will also take into account rarer cancers and circumstances where there is limited evidence available on a certain treatment.
Panels should give a clear reason if funding for treatment is denied. Cases can be reconsidered if more evidence becomes available to suggest a drug works or if information was missing from the original application.
For more information see our section on the cancer drugs fund|.
For answers, support or just a chat, call the Macmillan Support Line free (Monday to Friday, 9am-8pm)
If you have any questions about cancer, need support or just want someone to talk to, ask Macmillan.