What you can do if a treatment is not available

If the treatment you need is not available in your area, the NHS may arrange for you to have it somewhere else. The rules about this vary depending where you live.

You can find out more about how this works in:

• England and Wales
• Scotland
• Northern Ireland.

If a treatment is not provided by the NHS in your area, or is not available through the Cancer Drugs Fund, you can ask NHS England to pay for it. 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.

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 cancer 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.

If NHS England approves your application, it will then be discussed by an independent panel of expert healthcare professionals who have not been involved in your care. The panel includes:

• doctors
• nurses
• public health experts
• pharmacists
• NHS England representatives
• members of the public.

All panel members are trained to assess IFRs fairly and thoroughly. 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 to pay for the treatment. The panel meets 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, it will contact your cancer doctor.

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

If your cancer doctor has new evidence that could 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 of 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 will decide 1 of the following:

• The IFR panel’s decision was correct and the treatment will not be funded.
• 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 ‘Other things you can do if a treatment is not available’ below).

If you live in Wales and a treatment is not available on the NHS, your cancer doctor can ask your local health board to pay for it. 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 cancer doctor will include supporting information from you or someone you have chosen to represent you.

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, is the reasons why.

If your IPFR is accepted, the IPFR panel will discuss it at the next meeting and decide whether to pay for the treatment. The panel meets regularly and will usually give you a decision within 5 working days of the meeting. If it needs more information, it will contact your doctor.

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, 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.

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 will decide 1 of the following:

• The IPFR panel’s decision was correct and the treatment will not be funded.
• 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.

MPs are elected by local people to make sure their voices are heard and represented in parliament.

Your MP could help in a range of different ways, including writing to the Chief Executive of a hospital trust, raising an issue with the relevant government department, or asking questions at Prime Minister’s Questions. You can contact your local:

• MP (Member of Parliament)
• MSP (Member of the Scottish Parliament)
• AM (Assembly Member)
• MLA (Member of the Legislative Assembly).

If you explain your situation, they may be able to provide support.

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.

You may choose to pay for private cancer treatment yourself. Private healthcare is provided by independent companies and is separate to the NHS.

Private healthcare usually includes the cost of treatment, drugs and all the care you receive.

Cancer treatments often cost thousands of pounds. Your cancer 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 cancer team, 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 and private healthcare policy.

We have more information about insurance and cancer.

You can find out more about private healthcare from the Patients Association.

Some people, especially those waiting a long time for cancer treatment, may wish to travel to another country to have treatment sooner.

If you are considering having cancer treatment in another country, it is important to understand how it works and how it will be funded.

It is important to discuss any plans with your cancer doctor before making any final decisions about travel or medical arrangements. Your cancer doctor can direct you to your Integrated Care Board, Health Board or Health and Social Care Trust. They can explain your funding options, and which one would suit you best.

S2 funding route

Some people may be able to use the S2 funding route to access some treatments.

This is a direct funding arrangement between the NHS and the state-funded healthcare provider in another country.

The S2 funding route allows you to have treatment in another European Economic Area (EEA) country, or Switzerland, under the same conditions of care and payment as the residents of that country.

In some EEA countries, you might still need to pay for some of the treatment. This is because some countries only cover a percentage of the costs. But you may be able to claim some or all of the money back when you return to the UK.

You can find more information about the S2 funding route on the NHS website.

Some people may decide to pay for alternative therapies offered by private clinics in the UK and abroad. Alternative therapies (also known as alternative medicine) may claim to actively treat or even cure cancer. But there is no scientific proof to support these claims. False claims about alternative therapies have sometimes led people to refuse cancer treatments that could have helped.

No alternative therapies have ever been proven to cure cancer or slow its growth.

It is important to know exactly what each treatment involves and why it is not available on the NHS. Unlike treatments given on the NHS, many of these treatments have not been through clinical trials. Some may do more harm than good, or stop other cancer treatments from working as well.

If you are considering using alternative therapies, talk to your cancer team before making any decisions.

If you decide to use alternative therapies, it is important to check they are safe. Always check the therapist’s qualifications. Alternative therapies can be expensive, and some can cause serious side effects. They can also make you feel unwell and be harmful to your health.

We have more information about alternative therapies.

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 within the NHS. Your doctor must still agree to prescribe the drug or treatment.

As well as paying for the treatment or drug, you will also be asked to 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 should 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.

Another way you may be able to access specific treatments is by taking part in a clinical trial.

Clinical trials are a type of medical research involving people. They are important because they show which treatments are most effective and safe. This helps healthcare teams plan the best treatment for the people they care for.

Trials may test how effective a new treatment is compared to the current treatment used. Or they may get information about the safety and side effects of treatments.

Some trials help answer questions about treatments we already use. They may test whether combining treatments is more effective. Or they may research different ways to give a treatment so it works better or causes fewer side effects.

Clinical trials also research other areas of cancer care. These include diagnosis and managing side effects or symptoms.

We have more information about cancer clinical trials on our website.