NHS England ends ban on ‘treatment breaks’ for advanced bowel cancer patients
Friday 30 June 2023
NHS England have ended a ban on ‘treatment breaks’ for advanced bowel cancer patients, which means they can have a vital break from two drugs, without the risk of having to pay thousands of pounds to continue treatment. This is after five years of campaigning from the charity in partnership with patients and the clinical community.
The treatment break rule refers to NHS England’s policy imposed on drugs cetuximab and panitumumab for advanced bowel cancer patients. Before the ban was removed, breaks from treatment longer than six weeks were not allowed under any circumstances. If a break was taken longer than this, funding for treatment was no longer provided by NHS England. There are still some criteria that need to be met.
Breaks are vital to have other forms of treatment like surgery and improve a patient’s quality of life. This is because the prolonged use of cetuximab and panitumumab can cause skin toxicities and serious side effects, such as extreme fatigue, changes to bowel habits, pustules (bumps on the skin that contain fluid or pus) and cystitis (inflammation of the bladder).
Furthermore, a study of 1,630 advanced bowel cancer patients showed that having an extended break from treatment had no impact on overall survival.
Research from Health Data Research UK, led by one of our medical advisors Professor Mark Lawler and his team at Queen's University Belfast and in collaboration with Bowel Cancer UK, found providing a break in treatment for cetuximab to patients with advanced bowel cancer could help save £1.2 billion for NHS England.
Jane Ashford, who has long campaigned with us for this rule change, says: “I am absolutely delighted to hear that NHS England have finally dropped their treatment break rule after many years of campaigning. During my treatment I was not able to have a break due to the funding rules and there was a constant fear of the treatment being taken away from me.
“My oncologist was keen for me to have a break as the toxicity of the drugs was leading to serious health issues. However, I had no choice but to continue with no breaks under the arbitrary rule. I had to leave my job as an NHS Lead Nurse Specialist because of the physical, emotional and psychological side effects from long term use of chemotherapy. This had a huge impact on the quality of my life. This amazing news means this rule change for people with advanced bowel cancer can stop living in fear of losing funding for their treatment. They will be able to plan breaks, holidays and return to work. Importantly, our oncologists will now be able to deliver a personalised treatment approach which is a huge breakthrough.”
The rule has also had devastating consequences to patients and their families, like Carolyn Davison. She says: “My late husband was diagnosed with stage 4 bowel cancer in 2014. It had spread to his liver and possibly his lungs too. He had panitumumab, which resulted in his liver becoming operable. He had the liver operation, followed by bowel surgery. It took longer than six weeks to have and recover from the two operations, and so was not allowed to restart panitumumab.
“The cancer returned, and he had other chemotherapy drugs, but none worked. I wrote twice to our MP, and my husband wrote to the drug company explaining his situation that panitumumab had been working well and nothing else was helping. We sought second opinions from oncologists who all said they would like to put him on panitumumab if they could. He died in 2017.”
During the Covid-19 pandemic the treatment break rule was suspended as part of temporary changes to cancer care, but the rule has now been permanently removed from NHS England as part of an update to the policy on managing treatments breaks for people receiving anti-cancer drug treatments such as chemotherapy and immunotherapy.
Genevieve Edwards, Chief Executive at Bowel Cancer UK, says: “We're absolutely delighted to see NHS England drop their treatment break rule for cetuximab and panitumumab. For five years, we've been campaigning with patients, their families and clinicians, to allow patients to take a break from treatment without losing their entitlement to these vital drugs.
“Patients with advanced bowel cancer have very few treatment options and these drugs are often their only lifeline. This decision by NHS England will bring new hope for advanced bowel cancer patients to have a better quality of life, spend more time with loved ones and, for some, even the chance of full remission.”
- Read our blog on the impact of the treatment break on advanced bowel cancer patients
- Find out more about our Get Personal campaign for people with stage 4 bowel cancer
- Read more about our campaign victories
- Donate now and together we will stop people dying of bowel cancer
