Patients with rare cancers now have a better chance of survival due to a new government approach to clinical trials and access to breakthrough treatments.
As part of the government’s new National Cancer Plan – and the Rare Cancers Bill, which was introduced by Dr Scott Arthur MP and is currently going through Parliament – patients will be able to take part in clinical trials through the NHS App.
This gives them the chance to benefit from innovative approaches and technology to help fight the diseases.
Secretary of State for Health and Social Care, Wes Streeting, said: “We’re modernising the NHS so rare cancer patients not only get breakthrough treatments faster, but so we have more experts in the right places able to boost survival rates for rare cancers across the country.
“The National Cancer Plan marks a step‑change for brain cancer and rare cancer patients, giving researchers the tools they need and patients the hope they deserve.”
Easier access through the NHS App
Initially, patients will be able to search for trials on the clinical research database and ask to be contacted.
In time, patients with rare cancers will be able to sign up to automatically receive details of clinical trials that might benefit them.
Expanding the ‘doctor in your pocket’ NHS App is about creating a truly empowering, digitally enabled NHS, from booking a GP appointment, to managing existing care, all the way to receiving notifications on the latest research trials and state-of-the-art treatment.
Improving treatment options with the Rare Cancers Bill
Over the next three years, the Rare Cancers Bill – designed to incentivise research and investment into the treatment of rare cancers – will help provide more consistent access to research, faster progress from discovery to treatment, and ensure the government hires more cancer experts into top national roles to drive this change.
This comes alongside a total of £32.3m in funding for brain cancer research since July 2024. The money will help develop and enhance trials, focus on new and emerging treatments through precision medicine, provide tailored treatment and help develop the next generation of leaders in brain cancer research.
Top cancer experts appointed to boost efficiency and treatment quality
Top cancer experts will be recruited to help speed up trial referrals, whether through the app or in person.
They will include a new national lead for rare cancers, and the National Institute for Health and Care Research will also create a new Speciality Lead for Rare Cancers.
These experts will oversee a programme to make it easier for clinical trials to take place in England by ensuring that rare cancer patients can be automatically contacted about research and sign up to suitable trials, reducing reliance on chance referrals.
Improving survival rates for brain tumours
More than 10,000 people are diagnosed with a brain tumour each year, yet survival rates have fallen behind those of other cancers.
In 2023, dad-of-three Mike Shurmer began hearing music in his head when none was playing. After many tests, checks and scans, he was diagnosed with a brain tumour and given a year to live – but after taking part in the NIHR-funded FUTURE-GB trial, he and his family have got longer together than they could have hoped.
The trial involved using state-of-the-art technology to remove more of the tumour without damaging brain function than was previously possible.
Mike said: “Take your opportunity to take part in a research trial, please do it. The findings from these studies will help innovative surgery become normal and move the dial forward, which is fantastic.”
A new hope for those suffering with rare cancers
Altogether, the Rare Cancers Bill, Cancer Clinical Trials Accelerator, strengthened partnerships with Cancer Research UK, record funding, and the forthcoming National Cancer Plan represent a step‑change for brain cancer patients – replacing delay and fragmentation with access, coordination, and hope.
This follows a £32.3m boost to brain cancer research since July 2024, including an increase in investment in the NIHR Brain Tumour Research Consortium to an expected £25.5m.
The consortium brings together 48 organisations to deliver a nationally co-ordinated programme of research designed to accelerate the development and evaluation of new brain cancer treatments for adults and children.
Dan Knowles, CEO at Brain Tumour Research, concluded: “Brain tumours are the biggest cancer killer of children and adults under the age of 40, and greater investment in research and wider access to clinical trials is the only way to change this.
“We are hopeful that this government’s commitment to a national lead for rare cancers, further investment in innovation and a simpler pathway to accessing clinical trials will mean that when people are given the life-changing news that they have a brain tumour, they are presented with options, something that is lacking for many right now.”
