What you can do if a treatment is not available

If you live in England and a treatment is not 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. In 2016, the process for deciding which drugs can be paid for through the CDF changed.

Now, all new cancer drugs must be assessed by NICE. NICE will decide whether the new drug:

• should be made available on the NHS straight away
• should not be made available on the NHS
• could be made available through the CDF.

NICE should make this decision within 90 days of a new drug being licensed for use in England.

If NICE decides that a drug should be provided through the CDF, it may be available to patients while NICE carries out further research into that particular drug.

This is usually because the drug has shown positive results in a research trial, but more information is needed to see if the drug is effective enough to be provided on the NHS.

The drug will be made available through the CDF for a limited time, usually up to a maximum of 2 years, while NICE decides whether it should be provided on the NHS or not.

NHS England has an up-to-date list of the drugs that are currently available through the CDF. It explains which type of cancer the drug can be used for and at which stage.

If this matches your situation, your cancer doctor can apply online for you. The CDF will give your cancer doctor an online decision within 2 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 will need to apply again.

The CDF list is regularly updated and new drugs are added. Sometimes drugs are taken off the CDF list. For example, if NICE decides, after further research, that it should not be made available in the NHS. If you are getting a drug through the CDF and this happens, you can still complete 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 (see below).

Making an individual funding request

If a treatment is not provided by the NHS in your area, or is not available through the Cancer Drugs Fund, you can apply to NHS England to ask them to pay for it in your situation. This is called an individual funding request (IFR).

An IFR form must be completed and sent to NHS England 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
• the reasons why this treatment may be useful in your situation
• 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 tell you both what is happening.

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

What happens next?

If NHS England approves your application, it will then be discussed by a panel of expert health professionals.

Your cancer doctor will then be sent a letter to say whether:

• your IFR 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 approved by NHS England, the IFR panel will discuss it at their next meeting and decide whether or not to pay for the treatment. They meet regularly and will usually give you a decision within a few weeks. Urgent cases can be processed more quickly if needed. If the panel needs more information, they will contact your doctor.

If your request is approved by the panel, your doctor can then arrange for you to have the treatment. If the IFR panel decides not to pay for the treatment, your doctor will explain why. They will tell you about how you might be able to appeal against the decision, or what other treatment options may be available.

Making an appeal

If your cancer doctor has new evidence that could possibly change the decision, they can ask the panel to discuss your IFR again. Or they can ask for a review of the IFR panel’s decision. You or your cancer doctor must do this in writing within 20 working days after getting 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 cannot 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 is not available (see below).

If you live in Wales and a treatment is not available in the NHS, your doctor can apply to your local health board on your behalf to ask 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 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 your doctor is applying for
• other standard treatments
• the reasons why this treatment may be useful in your situation
• any research that supports this.

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

What happens next?

If something is missing from your IPFR form, it will be sent back to your doctor within 3 working days so they can complete it. Your doctor must then complete and re-submit the application form within 10 working days.

You and your doctor will then be sent a letter to say whether:

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

If your IPFR is accepted, the IPFR panel will discuss it at their next meeting and decide whether or not to pay for the treatment. They meet regularly and will usually give you a decision within 5 working days of the meeting. If they need more information, they will contact your doctor.

If your request is approved by the panel, your doctor can then arrange for you to have the treatment. If the IPFR panel decides not to pay for the treatment, your doctor will explain why. They will tell you about how you might be able to appeal against the decision, or what other treatment options may be available.

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 should discuss your request again.

If the final decision is not to pay for the drug, you cannot 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 is not available (see below).

There may be other things you can do if a treatment is not available.

Contact your local Member of Parliament (MP)

You can contact your local MP (Member of Parliament), MSP (Member of the Scottish Parliament), AM (Assembly Member) or MLA (Member of the Legislative 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 on 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 also talk to people who know what you are going through on our Online Community.

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 often cost thousands of pounds, and your doctor must still agree to prescribe the drug or treatment. This is a serious decision, so you might want to discuss it in detail with your doctor, and family or friends.

Health insurance may pay for cancer treatment, but usually only if you already have a policy before the cancer diagnosis. Some policies will not pay for certain cancer treatments, or may only pay for 1 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 care 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.