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If you and your doctor feel you would benefit from a particular drug or treatment, you can apply to your Primary Care Trust (PCT), asking for it to be made available to you as an exception from their usual rules.
In England, PCTs usually call these applications individual funding requests (IFRs).
PCTs will be replaced by Clinical Commissioning Groups in April 2013. These groups will have similar responsibilities to the PCTs they are replacing.
Usually you would ask your cancer specialist or GP to 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 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 its decision. It’s important to read about these before making an application. You can ask the PCT for this information.
The request 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.
You'll be sent a letter confirming that your application has been received. Your PCT should have all 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 whether 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 the PCT acknowledges your application, it may tell you when it will make its 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'll 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 Parliamentary and Health Service Ombudsman|. You can also seek legal advice.
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.