Ways to access treatment
Most people living in the UK use free healthcare. In Northern Ireland, this is Health and Social Care (HSC). In England, Scotland and Wales this is called the National Health Service (NHS).
Once you are diagnosed your cancer specialist will recommend the best treatment for you. Some treatments are licensed for a particular cancer type. But it does not mean that the NHS or HSC will fund them.
Your specialist might think that a specific treatment could be of benefit to you. If this treatment is not available on the NHS or HSC, 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 their recommendations on whether the treatment:
- benefits patients
- offers good value for money
They take different 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
The process is slightly different for each country in the United Kingdom.
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 reasons why you can't have a particular treatment.
England
The National Institute for Health and Care Excellence (NICE) is an independent organisation. It decides which medicines and treatments are available on the NHS in England. The guidance includes information for the public explaining who can have the medicine or treatment.
Scotland
The Scottish Medicines Consortium (SMC) advises the NHS in Scotland. Its decisions are separate from those made by NICE.
Wales
The All Wales Medicines Strategy Group (AWMSG) advises NHS Wales. They generally follow NICE decisions but can also issue their own guidance.
Northern Ireland
The Department of Health usually follow NICE decisions. There is a list published of all the approved NICE decisions in Northern Ireland.
Other ways to access 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 that your doctor only considers factors linked to your health and cancer. They do not consider other factors, such as your work or family life.
This process can take some time. Doctors 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. Your doctor can tell you if they think an IFR is suitable in your situation. They can explain what happens.
The EAMS aims to give people with life threatening or severely debilitating conditions access to promising new medicines. Doctors can use the scheme when no other treatment is available for these conditions.
Medicines within the EAMS haven't gone through the full licensing process. They might still be part of ongoing research, or they may be waiting for a license. This means that there may still be some uncertainties about how safe these medicines are. Researchers also wouldn't know yet how well they work, and what side effects they may cause.
This scheme applies to Scotland, Northern Ireland, Wales and England.
The Cancer Drugs Fund (CDF) is available for patients in England. There is a similar arrangement for people in Northern Ireland. Access to new medicines is slightly different in Scotland and Wales. You will need to talk to your specialist about this. They make the application for you.
England and Northern Ireland
The CDF is part of the NICE process for reviewing new cancer medicines. NICE aims to review all new cancer medicines within 90 days of them getting a licence for use in England.
NICE sometimes gives new medicines conditional approval. This is when a medicine shows promising results. But NICE need more evidence about how well it works to know if it’s a good use of NHS money. The medicine might be available from the CDF for a short period of time. This is often around two years until NICE publishes its final decision.
Health and Social Care Services in Northern Ireland follows NICE cancer drugs fund decisions.
Scotland
Scotland has a ‘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 medicines in the same way NICE can.
Wales
The Welsh Government has the 'new treatment fund’ for Wales. It aims to speed up patient access to new treatments. It includes treatments that NICE recommend for use in the CDF in England.
You might be able to have treatment as part of a clinical trial. Your specialist can tell you more about this. They may 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.
You might be able to pay for treatment or use private health insurance if:
- one of the organisations such as NICE has not recommended it for NHS use
- it is a treatment that hasn’t completed testing in clinical trials, or is not tested for your cancer type
All new treatments have to go through clinical trials. Only then can we say that a new treatment works better than the existing treatments for that cancer type.
Talk to your specialist before you pay for a treatment. Ask them about the possible risks and benefits of having a treatment that might not be recommended or fully researched. Ask what the alternatives are.
Paying privately for cancer treatments can cost many thousands of pounds. So do ask about the costs in advance.
You pay for the cost of the treatment while the NHS continues to pay for the rest of your care. There is more information about this on the NHS website.
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 including paying for medical treatment.
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
- not tested for your cancer type or haven’t completed clinical trials
- unproven (alternative) treatments and doctors don’t know how well they work, if at all
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 healthcare team first.
Make sure that you know what the treatment is and why it isn’t available on the NHS. Check on all the costs involved. This includes not only the treatment, but accommodation, travel and any extra costs of caring for you while on the treatment. 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 healthcare team. You might be able to talk with other people in a similar situation to you. 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 Llais
You can also contact your local authority. They can provide an independent advocacy service. It covers the NHS and HSC, social care and mental health services.
For information and support you can call our Cancer Research UK Nurses on 0808 800 4040. Lines are open from Monday to Friday, 9am to 5pm.
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