Other ways to access treatment
Your cancer specialist will recommend the best treatment for you. Some treatments are licenced for a particular cancer type. But it does not mean that the NHS will fund them.
Your specialist might think that a specific treatment might be of benefit to you. If this treatment is not available on the NHS, there might be other ways to access it.
How the NHS decides to fund treatment
Independent organisations need to approve new treatments. Only then can doctors prescribe them on the NHS. These organisations base recommendations on whether the treatment:
- benefits patients
- offers good value for money for the NHS
The process is slightly different for each country in the United Kingdom:
- NICE stands for The National Institute for Health and Care Excellence - this independent organisation decides which drugs and treatments are available on the NHS in England
- The Scottish Medicines Consortium (SMC) advises NHS Scotland – its decisions are separate from decisions made by NICE
- The All Wales Medicines Strategy Group (AWMSG) advises NHS Wales – they generally follow NICE decisions but can also issue their own guidance
- The Department of Health advises about health and social care in Northern Ireland – they usually follow NICE decisions
They take factors into account including:
- cost effectiveness
- evidence from clinical trials
- input from patient organisations, health professionals, experts, and other interested parties such as the drug company
How to find out if a treatment is available
It's always best to talk to your specialist about your treatment first. There might be good reasons why you can't have a particular treatment.
The National Institute for Health and Care Excellence (NICE) publishes its decisions. The public can read the guidance to check who can have the drug or treatment.
You can look at decisions made in Scotland. This information is available on the Scottish Medicines Consortium (SMC) website. It is written for health professionals. So it is not written in plain English.
The All Wales Medicines Strategy Group (AWMSG) advises NHS Wales. They generally follow NICE decisions but can also issue their own guidance.
For Northern Ireland, you can look on the Department of Health website. There is a list here of all the approved NICE decisions in Northern Ireland.
What to do if you can't get a treatment
Talk to your specialist if you think a treatment might help you but it isn’t available. They can tell you:
- whether this is the best treatment for your cancer at this particular time
- if there is any reason why you shouldn’t have the treatment, such as other health conditions or side effects you’ve had from previous treatments
- other ways you might be able to access the treatment if it's suitable for you
Your doctor can make an individual funding request (IFR) application. To apply for this, your doctor needs to show that:
- your clinical situation is different from other patients with the same cancer
- you are more likely to benefit from the treatment than other patients
The decision is only based on your clinical situation. This means the doctors only consider factors linked to your health and cancer. They do not consider other factors, such as your work or family life.
It might take some time and effort. People don't always succeed in getting treatments funded this way.
Individual funding requests have different names in each part of the UK:
- England and Northern Ireland - individual funding request (IFR)
- Scotland - Peer Approved Clinical System (PACS Tier 2)
- Wales - individual patient funding request (IPFR)
The application process and rules may vary depending on which country you live in. The NHS website has some information about the process in England. In Scotland, Wales or Northern Ireland the individual Health Boards provide this information. They state the rules and process for applying for an individual funding request.
You can look at your Health Board’s website or ask your specialist.
England
In England there is the Cancer Drugs Fund (CDF). It aims to make promising cancer drugs available to patients in England. NHS England runs it. But NICE decides on the drugs to include in the Fund.
NICE sometimes gives new drugs conditional approval. This is when a drug shows promising results, but NICE needs more evidence about how well the drug works to know if it’s a good use of NHS money. The drug might be available from the CDF for a short period of time. This is often around two years until NICE publishes its final decision.
NICE sometimes reviews a drug and decides not to approve it for use in the NHS. Since July 2016, the CDF can no longer provide these drugs.
You will need to talk to your specialist about this. They have to make the application to the CDF for you.
Scotland, Wales and Northern Ireland
The Cancer Drugs Fund is only available for patients in England. Access to new medicines is different in Scotland, Wales and Northern Ireland.
Scotland has its own ‘new medicines fund’. It pays for some medicines for patients with rare or end-of-life conditions. The SMC does not yet have the option to conditionally approve new drugs in the same way NICE can.
The Welsh Government has set up a New Treatment Fund for Wales. It aims to speed up patient access to new treatments. It includes treatments NICE recommends for use in the CDF in England.
Health and Social Care Services in Northern Ireland usually follow NICE decisions.
You might be able to pay for treatment or use health insurance if:
- one of the organisations such as NICE has not recommended it for NHS use
- it is a new treatment and hasn’t been thoroughly tested in clinical trials
The NHS doesn't provide new treatments that have not been through clinical trials. NICE or SMC can't review and recommend new, unproven treatments. To approve a treatment, they need results from clinical trials. The results show if it is better than the standard treatment.
You will have to pay for private treatment. Some cancer treatments not available on the NHS can cost many thousands of pounds. Before you pay for a treatment, find out the possible risks and benefits.
Talk to your specialist before deciding whether to have it. Remember that new treatments have to go through all the clinical trials. Only then can we say that a new treatment works better than the existing treatments for that cancer type.
You pay for the cost of the treatment. The NHS continues to pay for the rest of your care. There is more information about this on the NHS website.
You might be able to have treatment as part of a clinical trial. Your specialist can tell you more about this. They will know of trials looking at a specific treatment for people in your situation. You can also search for clinical trials on our clinical trials database.
You might have to travel to a different hospital to take part in a trial.
Bear in mind that researchers have to be very specific about who can join a clinical trial. This is called the 'eligibility criteria'. You can't join a trial if you don’t meet the entry criteria that have been set.
Crowdfunding
Crowdfunding is a way of raising money. It works by asking large numbers of people to each give small amounts of money. People use it for many things. It may include things like:
- setting up a new business
- investing in certain projects
- charitable or personal reasons
Crowdfunding is being used more and more to help raise money for non NHS cancer treatments. It might be to pay for treatments that are:
- being reviewed by NICE or the SMC for use in the NHS
- available privately or abroad but are not available on the NHS
- unproven and doctors don’t know how well they work, if at all; some costly private clinics abroad often offer these treatments
It is understandable that you may search for other treatment options. Doctors have concerns about people wanting to pay for unproven (alternative) treatments. They could damage your health and cost thousands of pounds.
Remember that cancer treatments available on the NHS have gone through clinical trials. If you think about having a non NHS treatment, you should talk to your medical team first.
You need to make sure that you know what the treatment is and why it isn’t available on the NHS. Make sure you know of all the costs involved. This includes not only the drug, but accommodation, travel and any extra costs of caring for you while on the drug. You may need to make repeated trips to the hospital or clinic.
The best access to new and experimental treatments is through a clinical trial. Talk to your cancer specialist about how to take part in a clinical trial.
Coping if you can’t have a treatment
You might feel disappointed if you can’t have the treatment you would like. This can be very difficult to come to terms with. You might feel a range of emotions, including anger.
It can be helpful to talk to your specialist. Ask them whether there are other treatments you can have or if you can take part in a clinical trial.
You might be able to talk with other people who have tried to get the same treatment. It can be helpful to share experiences.
Patient support services
If you still believe you aren’t getting the right treatment, contact the patient support service in your local hospital. They may be able to help you.
- In England, contact the Patient Advice and Liaison Service (PALS)
- In Scotland, contact the Patient Advice and Support Service (PASS)
- In Northern Ireland, you can get in touch with the Patient and Client Council
- In Wales, you can contact your local Community Health Council
You can also contact your local authority. They can provide an independent advocacy service. It covers the NHS, social care and mental health services.
