What you and your doctor can do

You can apply to your Primary Care Trust (PCT) asking for the treatment or drug to be made available to you as an exception from their usual rules. This is often called exceptional funding.

Exceptional funding

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 request to the PCT asking for authorisation of exceptional funding. If you are 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 the factors they look at before making an application. You can ask the PCT for this information.

The application will usually be made to the chief executive or another senior member of the PCT. Your specialist will know who to address this to or can easily find out.

Your application should include:

• your relevant medical history
• 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 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 your contact with the PCT.

Other things you can do

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 they can put you in touch with other people who’ve been through this process, who can share their experiences with you and offer their support.

What happens next?

You will be sent a letter confirming that your application has been received and a date for a hearing. Make sure the PCT has all the relevant information before this takes place.

The decision 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 four to eight weeks, but this varies around the country. When they acknowledge your application they may tell you when they will make their decision. If your situation is urgent then you should not have to wait long.

You (or your representative) and your doctor will receive a written decision. If your request is approved, your doctor can usually prescribe the drug or treatment quickly.

Making an appeal

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, 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 our 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, even though you cannot appeal again to the PCT, you can use the NHS complaints procedure or write to the Health Service Ombudsman.

You can also seek legal advice. See the section making a complaint for more information about this process.