What you can do if you live in Scotland and treatment isn't available
The Scottish Government is currently reviewing its policy and developing a new system for access to new treatments. The new system is expected to be in place from early 2014. This page will be updated when we know more about these changes.
The aim is to make Scotland’s drug approval system more transparent and to improve access to medicines for end-of-life care and rare conditions.
You can find out more on the Scottish Parliament website.
The information below is about how people can currently access treatments in Scotland.
Applying to your health board
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Under the current system, if you and your cancer specialist think you would benefit from a particular drug or treatment that has not been recommended by the Scottish Medicines Consortium, you can apply to your health board asking for it to be made available to you as an exception from its usual rules.
In Scotland, these applications are called Individual Patient Treatment Requests (IPTRs).
Each health board is required to provide information to you if you ask for it. It should explain how the IPTR process works in your area.
You need to ask your cancer specialist or GP to make the request on your behalf. An IPTR needs to be made by someone who knows your medical situation well and believes that the drug or treatment will help control your cancer. They must show why you are more likely to benefit from a medicine than would normally be expected.
You can only apply for a drug that has been licensed for your particular condition. If you're too ill to be actively involved in the application, you can ask someone else to act on your behalf.
The health board will consider different factors to help them make a decision. It’s important to read about these before making an application, and you can request this information from the health board.
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 about 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 health board.
When you are going through the request process, you should be given the name of someone who can give you information, advice and support.
The decision about whether you'll be able to have the treatment will be made by a specially formed panel. The membership of the panel will depend on the medicine being requested, and your health board should inform you who is on the panel.
The panel will make a decision within a set period of time, which will be set out in the health board’s written policy on IPTRs. The decision will be given to your doctor, who will discuss it with you.
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. Some people have been able to get original decisions changed through appeal. At this point you and your doctor can also ask for further explanation of the decision.
You can appeal if you think the panel’s decision was not justified or if the proper process was not followed. You can only appeal if your doctor supports your decision.
Each health board must have a process in place for IPTR appeals. There will be a time limit within which an appeal must be made.
If your appeal is unsuccessful, you can't appeal again, but you can use the NHS complaints procedure or write to the Scottish Public Service Ombudsman. You can also seek legal advice.