What you can do if a treatment is not available

If a treatment you need isn’t routinely available on the NHS, you may still be able to access it. However, it can be expensive and time consuming to get treatment outside of the NHS. It’s very important to speak to your cancer specialist to make sure it is the best option for you.

To access treatment outside the NHS you can:

  • apply to your local health body (varies by region)
  • apply to The Cancer Drugs Fund (England only) or other funding bodies
  • pay for your own drugs or treatment
  • consider using co-payment options
  • contact your local member of parliament.

If you decide to apply to your local health body, you will need to follow the process for your region. Processes are different across England, Scotland, Wales and Northern Ireland.

Difficulty getting the treatment you need can be hard to cope with. You may find it helps to speak with other people who have been through a similar situation. Make sure you get the advice and support you need before trying to get treatment outside of the NHS.

What you and your doctor can do if a particular drug isn't readily available

To begin with, it's important to talk to your cancer specialist. You can then both decide whether it really is the best treatment for you.

Choosing the best treatment will depend on a number of factors, such as:

  • the type and stage of cancer you have
  • any other treatments you've had
  • whether there are any other treatments that might be suitable
  • what the side effects of this particular treatment are likely to be.

If you decide to apply to your local health body for a drug or treatment, you'll need to follow the procedures they set out. Please read the information for your region below.


What you can do if you live in England and treatment isn't available

Read this information if you and your cancer specialist feel you would benefit from a particular drug or treatment not available on the NHS.

Your specialist may apply for funding through the Cancer Drugs Fund. The Cancer Drugs Fund has specific criteria that needs to be met and there is a limited list of drugs that will be funded. Your cancer specialist will know if you meet the criteria and whether the drug you need is on the list.

Alternatively, your cancer specialist can apply to your local Clinical Commissioning Group (CCG), asking for the drug to be made available to you as an exception from their usual rules.

In April 2013, CCGs took responsibility for healthcare across England. They bring together groups of GPs and other key healthcare professionals to commission services in their area. They receive a fixed amount of money from the NHS Commissioning Board to decide how resources should be allocated: including whether to fund particular treatments.

Find your nearest CCG.

In England, CCGs usually call these applications individual funding requests (IFRs).

Applying to your CCG

Usually your cancer specialist will apply on your behalf. IFRs need to be made by 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, and many CCGs have specific forms for this. If you're too ill to be actively involved in the application, you can ask someone else to act on your behalf.

Each CCG should have a policy around IFRs. It’s important to read this before making an application. You can ask the CCG for this information or you may be able to find this on their website.

The request form should tell you who it should be sent to. If this isn't clear, the CCG can provide this information.

The CCG will consider different factors to help them make its decision.

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 of your personal circumstances. Ask your cancer specialist for a copy of the request. It's a good idea to keep a written record of all contact with the CCG.

In some cases, the panel will consider other supporting information from you.

What happens next?

You'll be sent a letter confirming that your application has been received. Your CCG should have all the relevant information at this point to be able to make its decision.

The decision about whether you'll be able to have the treatment will be made by the Individual Funding Request panel (who are part of NHS Commissioning Services). You can ask whether you can attend their meeting. It's likely this will include an opportunity for you (or your representative) and your cancer specialist to present your case or answer questions from the panel.

The Individual Funding Request panel will make a decision within a set period of time. This is usually between 4–8 weeks, but it may be sooner and it can vary around the country. When the CCG acknowledges your application, it may tell you when it will make its decision.

If your request is approved, your cancer specialist can usually prescribe the drug or treatment shortly afterwards.

Making an appeal

If the request is denied, the reasons for this will be explained and you'll be told how you can appeal against the decision. There will be a time limit within which an appeal must be made (usually around a month). At this point, you and your cancer specialist can also ask for further explanation of the decision. 

If you want to appeal, either you, your cancer specialist or your representative must notify the CCG 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 cancer specialist. You or your cancer specialist should also explain whether your circumstances have changed since the original application.

Each CCG will have a timescale for hearing the appeal and informing you of their decision.

If your appeal is unsuccessful, you can't appeal again to the CCG, but you can use the NHS complaints procedure or write to the Parliamentary and Health Service Ombudsman. You can also seek legal advice.


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

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.

What happens next?

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.

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. 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.


What you can do if you live in Wales and treatment isn't available

Read this information if you and your cancer specialist think that you would benefit from a particular drug or treatment that has not been recommended for use on the NHS in Wales.

Unlike England, Wales does not have a Cancer Drugs Fund for drugs that have not been approved by NICE.

Your GP or cancer specialist, or you with the support of your GP or cancer specialist, can apply to your local health board asking for the drug to be made available to you as an exception from its usual rules. 

There is an application form, called an Individual Patient Funding Request (IPFR), which needs to be completed and submitted to the health board along with any supporting information. If you are making the application yourself, you can access support at any time during the process to help you make an application.

Applying to your local health board

As part of the application, your GP or cancer specialist will need to demonstrate why they feel your request has exceptional clinical circumstances.

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.

There is an All Wales Individual Patient Funding Request Policy that outlines how decisions are made and the process for making them.

A patient leaflet explaining how to make an Individual Patient Funding Request (IPFR) is also available. You can download it from the Health in Wales website or from the website of your health board, and it should also be available in local libraries and GP surgeries. Each health board should have an IPFR coordinator, whose contact details will be available on the health board website and on the patient information leaflet.

What happens next?

The health board will reply to you, normally within 10 working days of receiving your request, to let you know what will happen next.

Your request will be considered by a special panel called the IFPR panel. It meets every month and consists of a mix of clinically qualified people, as well as a lay (non-clinical) member who does not work for the health board. All panel members have the expertise to assess the information and evidence that your doctor has provided.

Each request is considered on an individual basis, and all the information is treated confidentially. The panel does not see any information that will identify who you are. They follow a checklist when making their decisions and they do not consider the social circumstances of patients when deciding whether or not to approve a request.

The doctor who made the request on your behalf will usually be informed of the panel’s decision within five working days of the meeting. They will contact you to explain the decision and discuss what it means for your care.

If your request is approved, your doctor can usually prescribe the drug or treatment shortly afterwards.

Making an appeal

If your request is denied and you and your doctor would like the decision of the panel to be reviewed, you should notify the health board within 25 working days of the date you receive the decision letter. Your doctor will have a copy of the review request form that you will need to complete together and send to the health board.

You can ask for a review of a decision if you feel that the panel did not take into account all relevant factors, or if you think the correct process was not followed. You can only request a review if your doctor supports your decision.

All reviews are heard by a separate review panel. If the review panel upholds the grounds for review, your request will be referred back to the IPFR panel to be reconsidered.

If you remain unhappy after your review decision, you can refer the matter to the Public Services Ombudsman for Wales, or you can use the NHS complaints procedure. You can also seek legal advice.


What you can do if you live in Northern Ireland and treatment isn't available

Read this information if you and your specialist believe you would benefit from a particular drug or treatment that has not been recommended for use in Northern Ireland.

Your cancer specialist should be aware of what drugs are available and funded in Northern Ireland.

If NICE has recommended that a drug should not be used within the NHS, it is unlikely to be funded in Northern Ireland.

Unlike England, Northern Ireland does not have a Cancer Drugs Fund for drugs that have not been approved by NICE.

It may be that you and your cancer specialist think you would benefit from a particular drug or treatment that has not been recommended for use in Northern Ireland. If there are very special clinical circumstances that are particular to your case, your cancer specialist can apply to the Health and Social Care Board asking for the drug to be made available as an exception to the normal rules.

Applying to the HSCB

Your cancer specialist will complete the application form for you. It will then be submitted to the Health and Social Care Board along with any supporting information. This application is called an Individual Funding Request (IFR).

When making the application, your cancer specialist will need to demonstrate why they feel your request has exceptional clinical circumstances.

Your application will include:

  • any details of your medical history that may be relevant
  • the medical reasons why this funding is being requested
  • the expected benefits of the drug or treatment
  • any relevant supporting information
  • a summary of why approval for the drug or treatment should be granted
  • details of any important research or information from recognised clinical trials that support the use of the drug or treatment in cases like yours
  • 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 request will be reviewed by the HSCB IFR Panel, which meets every week to consider IFRs received from all health and social care trusts. The panel is made up of clinically trained experts who will consider different factors to help it make its decision.

If your request is approved, your doctor can usually prescribe the drug or treatment shortly afterwards.

Making an appeal

If the request is denied, the reasons for this will be explained. Your cancer specialist may submit new or additional clinical information and ask that the request is reviewed in light of this information, or they may request a review of the decision.

A request for a review must be submitted within 20 working days of receiving the panel’s decision.

If your appeal is unsuccessful, you can't appeal again, but you can follow the HSCB complaints procedure and seek legal advice.


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

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

Contact your local member of parliament

Some people find it helpful to contact their local MP (Member of Parliament), MSP (Member of the Scottish Parliament), or AM (Assembly Member) 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. It may be able to give you further advice or put you in touch with other people who've been through this process, who can share their experiences with you and offer their support.

Paying for your own drugs or treatment

You may choose to pay for your 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 and one to discuss with your doctor, family and friends. Your doctor still needs to agree to prescribe the medicine or treatment.

Agreeing to pay for your treatment privately only applies to one medical condition. If you have private cancer treatment and then develop a totally different condition, you could have it treated either on the NHS or privately.

Private health insurance is also an option, but only if you have a pre-existing policy. Some policies don't include certain treatments for cancer, or may not fund more than one course of this type of treatment. Your insurer will be able to give you more detailed information based on your individual situation.

Co-payment (or top-up payments)

Co-payment is when a patient having NHS treatment pays privately to have a drug that isn't available to them on the NHS. People can do this by paying for it themselves or through an existing insurance policy. Some insurance companies have policies to fund drugs that are given alongside another treatment but aren't available on the NHS.

Current guidance in England, Scotland and Northern Ireland says that patients can pay to have drugs not available on the NHS while continuing with their NHS treatment. The NHS care and the privately funded care must be given separately. Wales is expected to adopt similar guidance.

As well as paying for the cost of the drugs given outside the NHS, you'll also have to pay for the costs related to giving these drugs. This includes staff time and any tests and scans associated with the extra care.

It is recommended that people using co-payment are given the drug or treatment in a different area to where NHS treatment is given. This could be at another hospital or in a private area in a ward or clinic at their usual hospital.

Co-payment should only be used when other means of getting a drug on the NHS have been looked at.

There may be variations on how co-payment is dealt with across the UK. Talk to your cancer specialist to find out how co-payment is dealt with in your local health body.


The Cancer Drugs Fund

The Cancer Drugs Fund is a special fund worth £200 million a year. It was established in 2010 to help improve access to cancer drugs for people living in England.

This fund is only available for people in England. The governments of Scotland, Wales and Northern Ireland decide separately how they spend their money on health and do not have similar schemes.

The fund is for cancer drugs that aren’t routinely available on the NHS. These are usually drugs that have been shown to work for your type or stage of cancer, but have not been evaluated or recommended for routine use by the National Institute for Health and Care Excellence (NICE). This is the organisation that sets clinical guidelines.

Since April 2013, there has been a national list of cancer drugs that are approved for funding by the Cancer Drugs Fund. But applications can also be made for drugs not on this list.

The fund doesn’t replace existing funding processes and is only available after all other sources of NHS funding have been explored.

Am I eligible for funding?

To begin with, it’s important to talk to your cancer specialist. You can both decide which treatment is best for you by openly discussing all possibilities. This will depend on a number of things, like the type of cancer you have, its stage, any other treatments you’ve had, what the side effects are likely to be, and any other medical conditions you have.

You must live in England to apply for the fund.

If you and your cancer specialist agree that a particular drug is right for you and it is on the list of drugs approved for funding from the Cancer Drugs Fund, your specialist will be able to apply online. They will usually receive a response immediately, but it may take up to two days.

The outcome will still rely on the evidence provided by your cancer specialist and details of your individual circumstances.

The list of approved drugs is regularly updated and the drugs that are funded may change as new drugs become available, or if a new drug is made routinely available on the NHS.

Drugs not on the approved list

Some cancer drugs aren't on the list of approved drugs. For these, your cancer specialist, working with local NHS managers, will look into all reasonable sources of NHS funding before applying to the Cancer Drugs Fund on your behalf.

How are funding decisions made?

Your cancer specialist has to apply online to the NHS England regional team that covers the area where you are to receive or are receiving treatment. A panel of medical experts will review individual requests for drugs that aren't on the approved list.

The panels make funding decisions based on:

  • the evidence provided by your cancer specialist
  • your individual circumstances (for example, whether the drug may improve your quality of life or increase your chance of surviving your illness)
  • any evidence about how well the drug works and the possible side effects
  • the cost of the drug.

They may consider applications where there is limited evidence.

How quickly are decisions made?

When the panel reviews an application for a drug not on the approved list, they should make their decision within 10 working days.

Panels should give a clear reason for denying funding for a drug.

Our access to treatment section has more information about how drugs are made available in the UK, and about other sources of funding.

Can I appeal against the decision if funding is denied?

Your cancer specialist can request a review of the panel’s decision through the regional medical director. But they can only do this if they think:

  • the panel didn’t make their decision using the proper process
  • the panel didn’t take into account all of the relevant evidence and funding available.

The review panel should make its decision within five days.

Your cancer specialist can reapply to the Cancer Drugs Fund if:

  • there is a change in your condition that means you’d get more benefit from the drug, or
  • new research is published that suggests you would get more benefit.

If you have a general complaint about your treatment, you might find it useful to read our information about making a complaint. You may also find our section about making treatment decisions helpful.

How is the drug fund managed?

NHS England has overall responsibility for managing the fund, with four regional teams carrying out day-to-day administration using national operating procedures.

These are:

  • North of England
  • Midlands and East
  • South of England
  • London.

Contact details can be found on the NHS England website.

If you already receive funding for a drug that was arranged under the old system of Strategic Health Authorities, this change in how the fund is managed will not affect your existing funding for your medication.


Your feelings

It can be very difficult when a drug that you and your cancer specialist feel could benefit you isn’t readily available. You may feel angry, frustrated and let down. Dealing with this as well as your cancer can feel overwhelming.

Having cancer can cause many different emotions, including anxiety and fear.

These are normal reactions and are part of the process many people go through in trying to come to terms with their cancer.

Everybody has their own way of coping with difficult situations. Some people find it helpful to talk to friends or family, while others prefer to seek help from people outside their situation. Some people prefer to keep their feelings to themselves.

There is no right or wrong way to cope, but help is available if you need it.

Our section about the emotional effects of cancer looks at the emotional impact cancer can have, and explains where you can get advice and support.


Back to Coming to your decision

How treatments are made available

Many cancer drugs are available on the NHS. Other cancer drugs may be accessible through other routes.

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.

Benefits, risks and side effects of treatment

Statistics can help you understand the benefits and risks of cancer treatments to help make decisions about treatment.

Making your decision

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

Understanding your rights as an older person

Your age should not affect your standard of treatment and care. Know your rights as an older person living with cancer.

About alternative therapies

Be wary of alternative therapies that claim to cure cancer or slow its growth.