What Progress Have We Made in Access to Brain Tumour Genomic Testing Since 2024?
By Andy Wright (Senior Programme and Policy Manager) and Nicky Huskens (CEO)
In September 2024, we published Closing the Gap — a landmark, UK-wide review of the genomic testing available on the NHS to people with a brain tumour. Through interviews with 41 clinicians, scientists and policymakers, across every UK nation and region, the report revealed a striking truth: despite rapid scientific progress, up to 95% of eligible patients were missing out on the whole genome sequencing. Patients with a brain tumour were missing out on tests that could guide diagnosis, personalise treatment, and open doors to clinical trials.
The report made a series of practical recommendations to tackle barriers across infrastructure, pathways, policy, and workforce. Over the past year, we have worked hand-in-hand with clinicians, charities, NHS leaders, Genomics England, and governments across the UK to turn these recommendations into meaningful, lasting change.
Collective policymaking: the strength of a united community
Perhaps the most significant lesson from the past year is this: progress happens when we act together. In the last year, the neuro-oncology community, including clinical teams, researchers, charities, and public bodies, has rallied behind a shared ambition — ensuring that every patient receives the genomic testing they need, regardless of where they live.
The findings of Closing the Gap have been raised at two All-Party Parliamentary Groups (APPGs) and debated in the House of Lords. In Scotland, they have shaped discussions at three Cross-Party Groups. The work has also gained national media attention across print and broadcast outlets. None of this momentum would have been possible without clinicians, researchers, charities and campaigners working collectively and consistently to push for change.
Our CEO, Nicky Huskens, discussing our findings on brain tumour genomics with ITV News.
Below, we highlight some of the biggest shifts driven by this collective effort.
National progress: a step-change in genomic testing across England
- A new national brain board for genomic testing
After years of groundwork by clinicians involved in the 5G Precision Medicine trial — supported by Cancer Research UK and Minderoo — a new national brain tumour genomics board has been established to review and interpret patients’ genomic results. Building on progress made through the trial, led by Prof Juanita Lopez (ICR/Royal Marsden) and Mr Richard Mair (Addenbrooke’s/University of Cambridge), the board is helping to standardise genomic interpretation and streamline access to precision-guided care.
- Rapid sequencing innovation: long-read technology moves forward
Across the country, centres are collaborating to test and implement rapid long-read sequencing technologies such as Oxford Nanopore. Research groups in Nottingham, Birmingham and London are now coordinating efforts to pilot these approaches. If adopted at scale, long-read sequencing could compress workflows that currently take weeks into a matter of hours — a transformation with profound implications for patient care.
- System-level reform through Genomics England and NHS England
One of the most important steps we have seen in the last year is the openness of national bodies to work with the community – with both Genomics England and NHS England taking major steps to address long-standing challenges:
- A revised Genomic Medicine Service (GMS) specification was published in 2025, emphasising greater regional autonomy and reducing the inefficiencies identified in Closing the Gap.
- Ongoing work to review the National Genomic Test Directory for brain tumours, improving consistency and laying the foundations for more predictable nationwide access.
These changes reflect direct responses to issues raised in Closing the Gap, demonstrating how evidence-driven policymaking can translate into rapid, practical reform.
Progress in the devolved nations
Change has also occurred across the devolved nations, each navigating their own structural and funding challenges.
- Wales: progress has been made through the All Wales Medical Genomics Service, including bridging agreements with English centres.
- Northern Ireland: clinical teams are exploring validation of long-read sequencing, recognising its potential to transform turnaround times.
But perhaps the most dramatic developments have taken place in Scotland:
A spotlight on Scotland
Identifying the gap
Our 2024 report revealed that patients in Scotland lacked access to essential tests routinely available in England — including, but not limited to, whole genome sequencing. Without this, Scottish patients risked being excluded from precision medicine trials, including cutting-edge studies such as the 5G Precision Medicine trial. Even more strikingly, a lack of routine molecular testing – such as methylation arrays – meant samples were being sent to London, increasing turnaround times and therefore delaying treatment decision-making.
To raise this issue at the highest level, in December 2024, we brought clinicians from Edinburgh and Glasgow together to meet Cabinet Secretary for Health Neil Gray, who committed to tackling this inequity. We then worked closely throughout 2025 with civil servants, clinical leaders and charity partners to elevate the issue:
- We were invited by Brain Tumour Research to present our findings at the Cross Party Group on Brain Tumours in June, prompting MSPs to write formally to the Scottish Government.
- We co-hosted a panel at the Scottish Cancer Conference in November (alongside Brain Tumour Research, brainstrust, the Brain Tumour Charity, CRUK and Bowel Cancer UK) in November, with significant media coverage helping to bring genomic inequalities into the mainstream cancer conversation.
- Genomic testing for brain tumours has been secured as a key campaigning priority for MSPs ahead of the 2026 Scottish Parliament elections.
Our Senior Programme and Policy Manager Andy Wright presenting at the Scottish Parliament in front of MSPs
This action has driven change; by late 2025, Scotland has made meaningful progress:
- Funding for methylation array and targeted gene panel testing was released in October 2025, with testing delivered from Glasgow more rapidly and in greater volume than previously available.
- The same month, the government funded a pilot of long-read sequencing, enabling clinicians to validate this technology against the current standard of care.
Yet despite this progress, whole genome sequencing is still not available to Scottish patients. This means that adults and children with a brain tumour in Scotland may still be denied access to precision medicine trials available to patients in England. We remain committed to working with partners across Scotland – including the Government – to address this inequity.
A visit to Glasgow: progress in action
To better understand the impact of this work, in November we travelled to Glasgow to meet Professor Willie Stewart, neuropathologist at the Queen Elizabeth University Hospital, and the team in molecular diagnostics, led by Claire McKeeve (Somatic Programme Manager).
Professor Willie Stewart, Professor of Neuropathology at Queen Elizabeth University Hospital Glasgow.
Professor Stewart walked us through the molecular testing facilities now available thanks to the October 2025 funding — including equipment enabling methylation profiling and gene panel testing for brain tumours. He several examples of how this technology has already started to transform patient care, with several cases the week we visited that will have a full diagnosis in time for MDT discussion – which would previously been delayed by weeks or even months.
He also highlighted the promise of long-read sequencing, and the importance of the Scottish Government’s decision to fund a validation pilot — a key ask originally raised with Neil Gray in 2024.
Closing the Gap in Numbers
- 41 professionals interviewed for the original report
- 6 parliamentary discussions (MPs. Lords or MSPs) referencing the work
- 3× increase in patients accessing whole genome sequencing
- £1 million+ invested through the NHS England Genomics Network of Excellence
Looking ahead
This first year of impact shows what is possible when clinicians, researchers, charities and policymakers unite behind a shared mission. Together, we have helped build new national structures, unlock vital funding, accelerate diagnostic innovation, and support political commitments to fairer testing.
But inequalities persist — particularly outside large academic centres in England — and we remain determined to ensure every patient, in every nation, has access to the genomic tests that could shape and save their lives.
As we enter the second year of delivering against Closing the Gap, we will continue to work with all of our partners, pushing for faster, fairer pathways to diagnosis for everyone affected by a brain tumour.
Thank you to all of our partners across the charity sector, all four UK Governments, clinicians and researchers for making this work possible.
