What you can do if a treatment is not available

If a treatment or drug is not available on the NHS, talk to your cancer doctor. It’s important to understand the treatment and whether it’s right for you.

If you and your doctor agree that you may benefit from the treatment, you can apply to the NHS for funding. You apply in different ways across the UK:

  • In England, your doctor can make an individual funding request to NHS England, or apply to NHS England’s Cancer Drugs Fund.
  • In Scotland, you can apply to your local health board asking them to pay for the treatment.
  • In Wales, you can apply to your local health board asking them to pay for the treatment.
  • In Northern Ireland, you can apply to the Health and Social Care Board (HSCB) asking them to pay for the treatment.

If a treatment still isn’t available, you may decide to:

  • contact your local member of parliament for support
  • contact an organisation that campaigns about access to treatment
  • pay for private treatment yourself or use health insurance

pay for the treatment alongside your other NHS treatment.

Talking to your cancer doctor

This information is about access to all types of cancer treatments. When we use the word ‘treatment’, this also includes drugs used to treat cancer.

If a treatment is not available in the NHS, start by talking to your cancer doctor. It’s important to understand the treatment and whether it is right for you.

This can depend on:

  • the type and stage of cancer you have
  • the side effects and risks of the treatment
  • the possible benefits of the treatment
  • any other treatments you have had
  • other treatments that are available.

If you and your doctor agree that you would benefit from the treatment, you can apply to the NHS for funding. You apply in different ways across the UK. There may also be other things you can do if a treatment isn’t available (see below).


If you live in England and a treatment isn't available

If you live in England and a treatment isn’t available in the NHS, your cancer doctor may make an individual funding request to NHS England. Or if the treatment is a drug, they may apply to NHS England’s Cancer Drugs Fund.

Applying to the Cancer Drugs Fund

The Cancer Drugs Fund (CDF) will pay for some drugs in some situations. It may pay for newer drugs that have not yet been assessed by NICE. NHS England has an up-to-date list of the drugs.

The list explains when the CDF will pay for each drug. This includes:

  • the type of cancer the drug can be used for
  • situations when it can be used.

If this matches your situation, your cancer doctor applies online for you. The CDF will give your doctor an online decision within two working days. Your doctor can arrange for you to start treatment at any time after the CDF agrees to pay for it. If you wait more than a month to start treatment, your doctor needs to apply again.

The CDF list is regularly updated and new drugs are added. Sometimes drugs are taken off the CDF list. If you are getting a drug through the CDF and this happens, you can complete having your treatment. The company supplying the drug will pay for this.

If your situation is not covered by the CDF list, your doctor may make an individual funding request instead.

Making an individual funding request

If a treatment isn’t provided by the NHS in your area, you can apply to NHS England asking them to pay for it in your situation. This is called an individual funding request (IFR).

An IFR form should be completed by someone from your healthcare team. This is usually the cancer doctor who will give you the treatment. Before they send the IFR they will discuss it with you, unless you are too unwell to do this.

The IFR form includes information about:

  • your medical situation
  • your previous treatments
  • the treatment your doctor is applying for
  • other standard treatments.

It also includes:

  • reasons why this treatment may be useful in your situation
  • details of any research that supports this.

Sometimes, your doctor will include supporting information from you or someone you have chosen to represent you.

You can ask your cancer doctor for a copy of the completed IFR form. You and your GP will receive copies of any letters sent to your cancer doctor about the IFR. Or your cancer doctor will let you both know what is happening.

You can find the IFR form and policy on the NHS England website.

What happens next?

First, your cancer doctor will be sent a letter to say whether:

  • your IFR has been accepted and will be discussed by the IFR panel at their next meeting
  • more information is needed about your situation
  • your IFR has been refused and why this is.

If your IFR is accepted, the IFR panel will discuss it and decide whether or not to pay for the treatment. The panel meet regularly and will usually give you a decision within four weeks. If your situation is urgent, a decision will be made within two weeks.

If your request is approved, your doctor can then arrange for you to have the treatment.

Making an appeal

If the IFR panel decides not to pay for the treatment, they will write to your cancer doctor explaining why and how you can appeal against the decision.

If your cancer doctor has new evidence that could change the decision, they can ask the IFR panel to discuss your IFR again.

Or your cancer doctor can ask for a review of the IFR panel’s decision. You or your doctor must do this in writing within 20 working days of the IFR panel’s decision letter. You can only ask for a review if your cancer doctor feels that the panel did not consider the medical evidence properly, or did not follow the correct process.

The review may decide:

  • that the IFR panel’s decision was correct and the treatment will not be funded
  • that the IFR panel should discuss your request again within 10 working days.

If the final decision is not to pay for the drug, you can't ask for another review. But you can use the NHS complaints procedure or write to the Parliamentary and Health Service Ombudsman. You can also seek legal advice.

There may also be other things you can do if a treatment isn’t available (see below).


If you live in Scotland and a treatment isn't available

If you live in Scotland and a treatment isn’t available in the NHS, your local health board may agree to pay for you to have it. This is arranged with the health board on an individual basis for you by your doctor. Your doctor can tell you more about this.

Or if the treatment is a drug, your doctor can make an individual patient treatment request.

Making an individual patient treatment request

If a licensed drug has not been approved by the Scottish Medicines Consortium, your doctor can apply to your local health board asking them to pay for it in your situation. This is called an individual patient treatment request (IPTR). Each health board has their own IPTR policy and form. Your local health board can give you information about how to apply in your area.

Your doctor completes the IPTR form but they will discuss it with you first. You should be given the name of someone from the health board who can give you information, advice and support about your IPTR.

What happens next?

A panel then discusses your IPTR and decides whether to pay for the drug in your situation. Your local health board’s policy will explain how long this should take. If your request is approved, your doctor can then prescribe the drug.

Making an appeal

If the panel decides not to pay for the drug, they will explain why. You can appeal this decision if your doctor thinks there is a good reason to. Your local health board’s policy will explain how and when you can appeal.

If the final decision is not to pay for the drug, 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.

There may also be other things you can do if a treatment isn’t available (see below).


If you live in Wales and a treatment isn't available

If you live in Wales and a treatment isn’t available in the NHS, you can apply to your local health board asking them to pay for it in your situation. This is called an individual patient funding request (IPFR).

An IPFR form should be completed and signed by you and your doctor. This could be your cancer doctor or sometimes your GP. If you need help or advice about this, contact your Community Health Council.

You can find the IPFR form and policy on the NHS Wales website.

The IPFR form includes information about:

  • your medical situation
  • your previous treatments
  • the treatment you are applying for
  • other standard treatments.

It also includes:

  • reasons why this treatment may be useful in your situation
  • details of any research that supports this.

You or your doctor may also include your own written statement with the form.

What happens next?

If something is missing from your IPFR form, it will be sent back to your doctor within three working days so they can complete it.

Then you and your doctor will be sent a letter to say:

  • your IPFR has been accepted and will be discussed by the IPFR panel at their next meeting
  • your IPFR has been refused and why this is – you can ask for a review of this decision.

If your IPFR is accepted, the IPFR panel will discuss it at their next meeting. They usually meet every month. If they need more information, they will contact your doctor. If they decide whether or not to pay for the treatment, they will write to you and your doctor within five working days of the meeting.

If your request is approved, your doctor can then arrange for you to have the treatment. If the IPFR panel decides not to pay for the treatment, they will explain why and how you can appeal against the decision.

Making an appeal

If your IPFR is refused, you or your doctor can ask for a review of the decision. You do this by completing a review request form within 25 working days of getting the decision. 

You can ask for a review if you feel that the panel did not consider the evidence you sent, or did not follow the correct process. You can only request a review if your doctor agrees.

The review may decide:

  • that the IPFR panel’s decision was correct and the treatment will not be funded
  • that the IPFR panel must discuss your IPFR again.

If the final decision is not to pay for the drug, you can't ask for another review. But you can use the NHS complaints procedure or contact the Public Services Ombudsman for Wales. You can also seek legal advice.

There may also be other things you can do if a treatment isn’t available (see below).


If you live in Northern Ireland and treatment isn't available

If you live in Northern Ireland and a treatment isn’t provided by the Health and Social Care Board (HSCB), you can apply to ask them to pay for it in your situation. This is called an individual funding request (IFR). 

Your cancer doctor usually completes the IFR form for you and sends it to the HSCB along with any supporting information. 

The IFR form includes information about:

  • your medical situation
  • your previous treatments
  • the treatment you are applying for
  • other standard treatments.

It also includes:

  • reasons why this treatment may be useful in your situation
  • details of any research that supports this
  • why you are more likely to benefit from this treatment than would normally be expected in other patients with a similar illness.

What happens next?

The IFR panel meets every week to discuss IFRs from all the health and social care trusts. They will contact your doctor if they need more information to help them decide about your IFR. When they have made a decision, they will let your doctor know within one week of the meeting.

If your request is approved, your doctor can arrange for you to have the treatment. If the IFR panel decides not to pay for the treatment, they will explain why. 

Making an appeal

If your cancer doctor has new evidence that could change the decision, they can ask the IFR panel to discuss your IFR again.

Or your cancer doctor can ask for a review of the IFR panel’s decision. They can ask for a review if they feel that the panel did not consider the evidence, or did not follow the correct process. Your doctor must do this in writing within 20 working days of the panel’s decision letter.

The review may decide:

  • that the IFR panel’s decision was correct and the treatment will not be funded
  • that the IFR panel should discuss your IFR again within 10 working days.

If the final decision is not to pay for the drug, you can't ask for another review. But you can follow the HSCB complaints procedure or contact the Public Services Ombudsman for Northern Ireland. You can also seek legal advice.

There may also be other things you can do if a treatment isn’t available (see below).


Other things you can do if a treatment isn't available

There may be other things you can do if a treatment isn't available.

Contact your local member of parliament

You can contact your local MP (Member of Parliament), MSP (Member of the Scottish Parliament), AM (Assembly Member) or MLA (Member of Local Assembly) and tell them about your situation. They may be able to provide support.

Contact an organisation

Some national organisations campaign about access to treatment in the NHS. If there is an organisation that campaigns about the treatment or the type of cancer you have, they may be able to give you advice. They may also put you in touch with other people who have been through this process. These people can share their experiences with you and offer their support. You can find contact details in our useful organisations database.

Paying for your own treatment (private treatment)

You may choose to pay for the treatment yourself. This usually includes the cost of treatment, drugs and all the care you receive.

Cancer treatments can cost thousands of pounds, so this would be a serious decision. You might want to discuss it in detail with your doctor, family and friends. Your doctor must still agree to prescribe the drug or treatment.

If you have private cancer treatment, you can still access NHS treatment. For example, if you need treatment for a separate health condition you can have this in the NHS.

Health insurance may pay for cancer treatment, but usually only if you already have a policy before the cancer diagnosis. Some policies won’t pay for certain cancer treatments, or may only pay for one course of the treatment. Your insurer can give you detailed information based on your situation.

Co-payment (or top-up payments)

Sometimes people pay for a private treatment while they are also having NHS treatment. This is called co-payment or ’topping up’. This system should only be used when there is no other way of getting the treatment in the NHS. Your doctor must still agree to prescribe the drug or treatment.

As well as paying for the treatment or drug, you also pay for any related costs. This includes staff time and any tests or scans you need because of the treatment.

The NHS and the private care must be given separately. This means you might have the private treatment at a different hospital or in a private area at your usual hospital.

You can top up your treatment by paying for it yourself or through an insurance policy. Some insurance companies have policies that cover NHS co-payments. The process for co-payments may vary in different areas of the UK. Your cancer doctor can tell you more about the process in your area.

Back to Coming to your decision

Finding out your treatment options

Knowing basic information about your type of cancer and different treatments options can help you to make an informed treatment decision.

Making your decision

If  you’re struggling to come to a decision about treatment, try following these five steps.