How treatments are made available

Drugs only become available for use after years of research and development. Before a drug is widely prescribed by the NHS, it must have a license and in most cases, an independent advisory body must recommend it. Across most of the UK, local health bodies use guidance produced by the National Institute for Health and Clinical Excellence (NICE) to decide which drugs to make available through the NHS.

In some cases, it may be possible for you to be treated with an unlicensed drug, or one that is not recommended by clinical bodies. Some drugs are accessible through the Cancer Drugs Fund. This is a government fund that helps people, living in England, access cancer drugs that aren’t available on the NHS. If your doctor wants to give you an unlicensed drug, they can make a special request to the local health body. If you are still unable to access a drug, you may want to consider paying for the drug.

It can be incredibly frustrating and upsetting when a drug is not routinely available. For help and advice about accessing a particular drug, speak with your doctor or call our cancer support specialists.

How drugs and treatments are made available in the NHS

All medicines in the UK are subject to a system of licensing laid down by European and UK law.

Before a drug is licensed, it will have been through years of research and development. After this, the developer will apply for a licence for the drug. This is when the safety of the drug is looked at, as well as how it compares to drugs currently in use.

Most new cancer drugs must be licensed by the European Medicines Evaluation Agency. The organisation that regulates medicines in the UK is the Medicines and Healthcare Products Regulatory Agency. Until a new drug is licensed, it can't be widely prescribed within the NHS.

When a drug is licensed, it's usually for a specific use. For example, a drug that is licensed to treat breast cancer should not be prescribed to treat any other type of cancer. If new trials show that the drug is also helpful in treating another type of cancer, the makers will have to apply for an additional licence.

Non-drug treatments - for example, new ways of giving radiotherapy - become available when there’s good evidence from studies that they work well.

Organisations that give advice to the NHS

The National Institute for Health and Clinical Excellence (NICE) is an independent organisation. It gives advice on which new and existing drugs and treatments should be available on the NHS, and on how particular illnesses like cancer should be treated. NICE advises the NHS in England and Wales. In Wales, the All Wales Medicines Strategy Group advises on the use of treatments that haven’t yet been evaluated by NICE.

In Scotland, guidance about treatment is developed by the Scottish Intercollegiate Guidelines Network. The Scottish Medicines Consortium (SMC) advises Scottish NHS Boards on the use of new drugs. Sometimes, the NHS in Scotland will choose to adopt NICE guidance on certain treatments.

In Northern Ireland, the Department of Health, Social Services and Public Safety reviews guidance produced by NICE. If it decides the guidance can be applied to Northern Ireland, it will endorse it for use by health and social care trusts.

NICE and the SMC look at how a new drug or treatment compares to the treatment already available and whether it's good value for money. When all the information has been reviewed, a decision is made about the new drug or treatment and guidance is then issued.

NICE and the SMC don't make decisions about all drugs or treatments used in the NHS. If they haven’t issued guidance, local health bodies can use other information to decide whether to provide a drug or treatment.

A lack of NICE or SMC guidance is not a reason for not providing a treatment. Your doctor can prescribe a drug for you before NICE guidance is available, but your local health body needs to agree to this. However, if NICE approves a medicine, this replaces any previous local decisions. If NICE does not approve a particular drug, it may still be accessible through exceptional funding or the Cancer Drugs Fund.

Local health bodies must make arrangements to fund the drug within three months. However, guidance for a non-drug treatment is not enforced in the same way, so differences in regions can happen.

Despite these procedures and any guidance, it's still up to the doctor to decide whether to use a treatment or prescribe a drug. Doctors may wish to treat a patient with an unlicensed drug. In this situation, the local health body will assess how useful it is. They may then allow it to be prescribed on an individual basis.

Access to cancer treatments not offered by the local health body

This information is for people who feel they would benefit from a treatment or drug that isn’t routinely funded by their local health body.

Key to acronyms

Throughout this section the following acronyms appear:

  • IFR – Individual Funding Requests
  • IPTR – Individual Patient Treatment Requests
  • NHS – National Health Service
  • NICE – National Institute for Health and Clinical Excellence
  • CCG – Clinical Commissioning Group
  • SMC – Scottish Medicines Consortium

Each nation has a different name for local health bodies. In England, they are called Clinical Commissioning Groups (CCGs), in Scotland and Wales they are called health boards, and in Northern Ireland they are called health and social care trusts.

If you want to apply to your local health body for a drug or treatment, you'll need to follow the procedures they set out. These may differ from region to region. Some have leaflets or information on their websites explaining what you should do. Your cancer specialist will also explain the local process to you.

Some people may consider other options, such as paying for drugs or treatments that they can't get throught the NHS or their health and social care trust.

It can be very difficult when you feel that a drug or treatment that 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.

We hope this information answers your questions. If you have any more questions, you can ask your doctor or nurse or speak to one of our cancer support specialists.

The Cancer Drugs Fund

The UK government's £200 million cancer drugs fund for England aims to help people who are trying to access cancer drugs that aren't available on the NHS. For more information see our section on the Cancer Drugs Fund.

Why some drugs or treatments are difficult to access

Local health bodies need to make sure the drugs and treatments they fund are of clear benefit to the people in their area. They also need to make sure they are spending their money wisely.

This means that they may decide some drugs and treatments, which aren’t approved by NICE or the SMC, won’t be readily available. Usually, local health bodies keep a list of drugs or treatments that are not automatically funded.

Cancer drugs or treatments may not be automatically funded if the local health body decides they haven’t been proven to be more effective than other treatments, or if they aren’t good value for money.

The effectiveness of a drug or treatment may be decided after trials have been done and when decisions are made by NICE or the SMC.

Whether or not a drug or treatment is funded in individual cases will be decided by the local health body. Each local health body must have a process in place to make these decisions.

It can be very difficult when you feel that a drug or treatment that 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.

We hope this information answers your questions. If you have any more questions, you can ask your doctor or nurse or speak to one of our cancer support specialists by calling 0808 808 00 00.

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.