Beating bowel cancer together

Update: NHS England extends temporary changes to the treatment break rule

Thursday 1 July 2021

The treatment break rule that is currently paused for the duration of the coronavirus pandemic, is to remain suspended until 1 October 2021.

Update, November 2022: The National Cancer Drugs Fund list explains that for advanced bowel cancer patients on cetuximab or panitumumab who need a treatment break of more than six weeks, then your clinical team need to complete a treatment break form to restart treatment.

Update, November 2021: We met with Steve Williamson, Lead Cancer Pharmacist and others at NHS England to discuss the future of the treatment break rule once interim COVID-19 guidance is removed. The interim treatment options will remain in place until at least Wednesday 31 March 2022 if they're still required while the COVID-19 pandemic is ongoing.

The treatment break rule is NHS England’s policy imposed on advanced bowel cancer drugs cetuximab and panitumumab, where patients are not allowed to take planned breaks from treatment with these drugs for longer than six weeks. If a patient takes a treatment break longer than this, they would lose funding for treatment from NHS England.

The policy is currently suspended for the duration of the COVID-19 pandemic as part of the temporary changes to cancer care. This means that during the pandemic, those who want to take a break from treatment with cetuximab and panitumumab for longer than six weeks, can continue to do so  without losing funding.

We have been campaigning to permanently remove this policy as part of our Get Personal campaign, which aims to improve access to the best treatment for advanced bowel cancer patients.

Who is affected by the treatment break rule?

The treatment break rule impacts people in England whose bowel cancer has spread to other parts of the body, which is also known as advanced bowel cancer. 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.

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.

With few treatment options available to those with advanced bowel cancer, cetuximab and panitumumab are often people’s only lifeline. Ongoing access to cetuximab and panitumumab is essential for treating this patient group as it offers hope for longer term survival and, for some, even the chance of full remission.

Why are we campaigning for the policy to be permanently removed?

The treatment break rule leaves patients in an extremely difficult situation where if they take a break, they are left struggling to self-fund for their medication. If a patient takes an unplanned break, for example to have emergency surgery, they can apply for an individual funding request (IFR) which can sometimes allow them to restart treatment.

Guidance on what constitutes a ‘planned’ treatment break is confusing to both clinicians and patients. We’ve heard how many patients feel forced to remain on continuous treatment, with some having up to 70 cycles of treatment every two weeks, without any breaks to recover from treatment side effects.

Treatment breaks are vital to improving a patient’s quality of life. This is because the prolonged use of cetuximab and panitumumab can cause a number of skin toxicities and side effects. These include:

  • extremely painful red skin rashes
  • dry and peeling skin across hands, feet and face
  • cystic, painful acne-like spots
  • nausea
  • diarrhoea
  • reduced appetite.

We’ve also heard about the psychological impact that continued treatment has had for people with advanced bowel cancer, with many describing how their side effects have left them feeling debilitated, isolated and self-conscious. In addition, the treatment break rule has restricted them from attempting to return to any level of ‘normality’, including being unable to return to work or take extended holidays with family.

What are we doing?

  • In June 2021, we wrote to Peter Johnson and others asking for confirmation that the temporary pause on the treatment break rule would remain in the place. The issue was also raised with the Health Secretary by Rebecca Long-Bailey MP, on behalf of one of her constituents, and we have written to her to thank her for highlighting this
  • In February 2021, we wrote to Peter Johnson and others, again, seeking clarity on the temporary suspension of the treatment break rule due to COVID-19.
  • In December 2018, we submitted a joint letter to NHS England signed by a number of members of the medical and scientific community. This letter called on the urgent permanent removal of the six week treatment break rule imposed on these cancer drugs. Read our full letter to NHS England here

Are you considering taking a break from treatment?

Sometimes taking a break from treatment can help you both physically and mentally, but you may need treatment to control the cancer first. If you are considering taking a break from treatment, speak to your healthcare team who will be able to give you advice and support about the next steps.

If your clinician is unaware of the changes to the treatment break rule, you can direct them to the guidance in the NHS England interim treatment options. Scotland, Wales and Northern Ireland do not have this policy and so patients are allowed to take breaks for longer than six weeks without risk of losing funding during and after the COVID-19 pandemic.

You may also find it helpful to direct your healthcare team to further information about bowel cancer treatments that are allowed during the pandemic on the NICE website. This covers treatment in England and Wales. For Scotland, visit the Scottish Government website and for Northern Ireland visit the Northern Ireland Cancer Network website.

Genevieve Edwards, Chief Executive of Bowel Cancer UK, said: “While we’re pleased NHS England has extended the treatment breaks policy, many bowel cancer patients continue to be left in limbo, not knowing what the situation will be for them in three months’ time.

“We don’t believe it’s right or fair that people living with advanced bowel cancer in England have the threat of the treatment break rule reverting back to a policy which sees them lose funding for certain treatments if they take break of longer than six weeks.

“England is the only part of the UK where this rule exists and we’d like to see it removed on a permanent basis. This would give patients - who can often benefit from taking a break from bowel cancer drugs, including allowing them time to benefit from some recovery and resilience for further treatment - the confidence that they can return to them following a break."

  • Read Jane's story about living with advanced bowel cancer and the impact a treatment break would have for her

  • Find out more about advanced bowel cancer

  • Become a campaigner and join thousands of people helping to make real change happen for people affected by bowel cancer

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