Manifesto for Wales 

Time to Do Things Differently: Our Plan for Change in Wales

Brain tumours kill more children and adults under the age of 40 than any other cancer, yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.

There are more than 100 different types of brain tumours making them notoriously difficult to diagnose and treat.

In Wales, 674 people are diagnosed with a brain tumour each year.

Only 17.2% of patients in Wales survive their brain cancer diagnosis five years or more, compared to an average 61.5% for all cancers.

Our Plan for Change urges the Welsh Government to address systemic barriers to clinical trials, research funding and access to whole genome sequencing, to bridge the “devolution gap” and ensure Welsh brain tumour patients are not left behind.

Policy recommendations: 

Advancing clinical trials: Bringing research to the patient 

The challenge: Between 2019 and 2024, Wales hosted 120 industry sponsored cancer clinical trials, none of which were for brain cancer. Of the 681 participants recruited to trials, zero were brain cancer patients.

Research is heavily centralised in Cardiff, so patients face geographic barriers. In January 2026, of the 10 academic clinical trials for brain cancer currently active and recruiting in Wales, only one is recruiting outside of Cardiff.

Recommendations:

Mandate and fund a national strategy to advance clinical trials for rare and less common cancers beyond the Cardiff hub (the current primary oncology research centre) 

Incentivise the pharmaceutical industry to set up brain tumour clinical trials in Wales by improving the speed of regulatory approvals, reducing trial start-up times and supporting effective patient recruitment 

Integrating innovative tools: Whole genome sequencing (WGS) 

The challenge: 

WGS can improve diagnosis, identify patients suited for clinical trials and reveal mutations that guide personalised treatment, but Wales lacks routine WGS for adult brain tumour patients. With only one centre in Cardiff, some patients must travel to Liverpool, creating unequal access and delaying targeted treatments.

Recommendations:

Standardise “Cold Chain” Logistics by mandating that the neurosurgical centre in Wales be equipped with the necessary equipment to facilitate the immediate preservation of tissue samples

Include primary brain tumours in the National Genomic Test Directory for Wales to ensure clinicians can order WGS as a standard of care, rather than an exception

Implement suggested education for neurosurgical and pathology teams on the “Fresh-to-Frozen” protocol to ensure fresh frozen tissue is collected from all patients where eligible

Improve patient genomic literacy by developing accessible educational resources co-produced with patients that explain how tissue donation directly impacts their personalised treatment plan and contributes to wider research

Greater focus on funding 

Health and Care Research Wales have supported only one brain tumour research project since its creation in 2015, with no new projects funded after 2022. This lack of investment slows progress in understanding and treating brain tumours, limits patient access to clinical trials and reduces the ability for Wales to attract industry investment and scientific talent. 

Recommendations: 

Increase targeted funding for brain tumour research opportunities provided by Health and Care Research Wales to address the current funding gap 

Hold Welsh Government and Health and Care Research Wales to account for the number of brain tumour research opportunities they are funding 

Patients and families calling for change

  • “As a brain tumour patient, my experience of healthcare in Wales has been incredibly difficult. A brain tumour diagnosis is frightening enough without facing gaps in care, limited treatment options and a lack of support. I am backing the Manifesto for Wales because people in Wales deserve better – better access to specialist care, better treatments and stronger support for patients and families from diagnosis onwards. Lives depend on it.”

     

    - Lauren Macpherson, 29, from Cardiff 

  • “Being diagnosed with a glioblastoma turns your world upside down in an instant. I’ve had to raise more than £100,000 to access private treatment in Germany, treatment that simply isn’t available on the NHS or here in Wales. No one facing a brain tumour should have to fundraise to survive. Lives, families and futures are profoundly impacted by this disease, yet brain tumours remain desperately underfunded. The Manifesto for Wales is a vital step towards change. We urgently need better funding, fairer access to treatment, and a commitment to research so people are given real options, not impossible choices. Patients deserve hope, not postcode lotteries.”

    - Matt Collins, 38, from Aberdare

  • “As a bereaved mum, I am acutely and painfully aware of the historical lack of progress in brain tumour treatment and survival rates. There needs to be change and it absolutely must happen now.


    “The barriers encountered by those affected by a brain tumour, from diagnosis and treatment through to end-of-life care, are both devastating and unjust. It is imperative that the Welsh Government hears the voices of those affected by brain tumours and makes a national commitment to changing the story for individuals and their families in Wales.


    “Brain cancer stole my daughter’s childhood and took away her life. Significant improvements in awareness, research funding and access to specialist support, trials and treatment will offer tangible hope to families like ours, whose precious loved ones deserve so much better.”
     

    - Debra Gibbon, mother to Jenna who died aged 15 

Read our Manifesto for Wales or download as a PDF. Any questions, please contact Katherine Dew, our Policy and Public Affairs Manager.