Our campaigning has put an end to the ban on ‘treatment breaks’ for advanced bowel cancer patients

We're delighted to hear that following five years of our campaigning in partnership with patients and the clinical community, NHS England have removed a rule that prevented patients with advanced bowel cancer from taking a break longer than six weeks from their treatment if they were receiving the drugs cetuximab and panitumumab.

Why is this so important for patients?

Treatment breaks are vital to improving a patient's quality of life. The prolonged use of cetuximab and panitumumab can cause skin toxicities and serious side effects. Patients have spoken about the psychological impact that continuous treatment has for people with advanced bowel cancer, with many describing how their side effects have left them feeling debilitated, isolated and self-conscious. For others, the treatment break rule restricted a return to any level of 'normality', including returning to work or taking extended holidays with family.

Jane Ashford has long campaigned with us for this rule change, saying: "I'm an NHS Lead Nurse and Clinical Specialist and I'm not able to return to the job I love because of the physical, emotional and psychological side effects from long term use of chemotherapy. I'm grateful that the drugs are doing its job in keeping me alive, but my quality of life has worsened. My oncologist has told me that I'd benefit from a treatment break, but I'm too scared to take the risk. I can't afford to self-fund the drugs."

With few treatment options available to those with advanced bowel cancer, cetuximab and panitumumab are often people's only lifeline. The treatment break rule left patients in an extremely difficult situation, potentially left struggling to self-fund their medication if their funding was removed after taking a break. We heard from patients who felt forced to remain on continuous treatment, with some having up to 70 cycles of treatment every two weeks, without any breaks to recover from the side effects.

Last week NHS England published their new policy on funding chemotherapy following a break in treatment which will allow advanced bowel patients to take a break of more than six weeks without have to risk losing their funding.

How we made this change happen

In 2018, we started hearing from patients and their clinicians who were raising concerns about an NHS England policy that they felt was detrimental to patients. The rule said patients on cetuximab and panitumumab were not allowed to take breaks from treatment for longer than six weeks. If a patient took a break longer than this, they could lose funding for treatment from NHS England.

We reviewed the evidence and it showed there was no detrimental impact to patients who took a break. We launched our work to lift the treatment break ban as part of our Get Personal campaign, which aims to improve access to the best treatment for advanced bowel cancer patients.

What we did

• In 2018, we submitted a joint letter to NHS England signed by members of the medical and scientific community calling on the urgent permanent removal of the treatment break rule imposed on these cancer drugs. Read our full letter to NHS England
• We used our position as a Patient and Public Voice Representative on NHS England’s Chemotherapy Clinical Reference Group (CRG) to raise the experience of patients and influence a policy change. The main function of the CRG is to provide clinical advice for specialised services, including the Cancer Drugs Fund
• We secured agreement internally with NHS England at the end of 2019 that the treatment break rule would be permanently removed and this change in policy would be implemented in 2020
• Due to COVID-19, the decision to publish this change in policy was delayed, but the treatment break rule was temporary suspended for three months at a time during the pandemic. We continued to press for this policy to be made permanent
• The issue was raised with the Health Secretary by Rebecca Long-Bailey MP, on behalf of one of her constituents
• We collaborated with Health Data Research UK, led by one of our medical advisors Professor Mark Lawler and his team at Queen's University Belfast, on research that found providing a break in treatment to patients with advanced bowel cancer, not only benefit a patient's quality of life, but could also help save £1.2 billion for NHS England

Tim Maughan, Emeritus Professor of Clinical Oncology, University of Oxford, was integral to this work. He tells us why this is change in policy is so important: "It's really important for cancer patients to be able to retain some control over their lives in this difficult period being on treatment. The flexibility to allow a break from treatment, whether that be for a rest, a holiday with family, a bucket list opportunity or for further medical treatment, gives patients a little more choice which is a great benefit."

We want to thank our patient community for sharing their stories and members of the clinical and scientific community for helping us put forward a strong case for change. Working together we really can make a difference.

What does this mean for me?

Cetuximab and panitumumab are types of targeted therapy, which help the body control the way cancer cells grow and destroys them. Not everyone with advanced bowel cancer can have these drugs. Patients will have a test to see if they have a normal or mutated gene in their DNA called RAS. Those who have a normal RAS gene may be able to have cetuximab or panitumumab.

These drugs are only approved for first-line treatment for previously untreated advanced bowel cancer and should only be given as part of a continuous chemotherapy plan.

If you live in England and have an unplanned break from treatment because you're recovering from surgery, there's no need for your healthcare team to submit a treatment break form. However, in some circumstances such as to recover from the toxicity of the treatment, you may have an unplanned treatment break which lasts for longer than six weeks. In those circumstances, you can restart cetuximab or panitumumab despite evidence of disease progression, but your healthcare team must submit a treatment break form. This is because of how planning, purchasing and monitoring of these services works. As long as you meet the criteria in section 7 of the updated policy, you will not lose funding or access to these drugs.

If you think this may affect you, speak to your healthcare team to find out more. You can point to the change in policy, in sections 6 and 7, in the NHS England policy on treatment breaks.

What about if I live in Scotland, Wales or Northern Ireland?

The treatment break rule affected people in England whose bowel cancer has spread to other parts of the body, which is also known as advanced bowel cancer. During the COVID-19 pandemic, the treatment break rule was suspended temporarily. Patients can now be assured that this rule has been permanently removed from NHS England's policy.

Scotland, Wales and Northern Ireland don't have this policy and patients are allowed to take breaks in their treatment with cetuximab and panitumumab without risking losing funding for their treatment.

• Join us as a campaigner and help us change policy and legislation to improve diagnosis, treatment and care for people affected by bowel cancer
• Find out more about our Get Personal campaign which aims to improve access to the best treatment for advanced bowel cancer patients
• Find out more about advanced bowel cancer