Most NHS brain cancer patients unable to access whole genome sequencing

Only five percent of eligible NHS brain cancer patients were able to access whole genome sequencing (WGS) in 2023, an investigation of the NHS in England has revealed.

The charity Tessa Jowell Brain Cancer Mission shared data with Professor Lord Ara Darzi for his Government-commissioned report into the state of the NHS in England. Published in September 2024 the report focused on, among other indicators, cancer mortality rates in the UK. Authors investigated the state of the NHS Genomic Medicine Service, launched in 2018, which makes WGS available as part of routine care for eligible patients, including some cancer patients.

The report read: 'In 2024, more than 35,000 genomic tests are being completed each month but only around 60 percent on time. Recent research from the Tessa Jowell Brain Cancer Mission found that in practice, only around five percent of eligible patients with brain cancer are able to access WGS, which is important for treatment selection.'

In 2023, consultants raised the alarm over how delays to WGS for brain cancer patients was causing potentially fatal delays to treatment, in the Mail on Sunday. It reported that the Genomic Laboratory Hubs set up in 2021 to underpin the NHS Genomic Medicine Service have become overwhelmed with demand. They were set up to offer NHS patients WGS for 7000 rare diseases and 200 cancer indications.

The report published by the Government last week stated: 'And the NHS is the first in the world to offer whole genome sequencing as part of routine care. However, there is more to do to ensure access for everyone who could benefit.

'Research shared with the investigation by the Tessa Jowell Brain Cancer Mission found that 72 per cent of UK neuro-oncology centres were able to deliver WGS to at least some of their patients but that no centre was able to offer it to all eligible patients.'

Timely whole genome sequencing was crucial for ensuring patients had access to the best treatment in a timely manner, the report explained. These delays, combined with other NHS treatment delays could be responsible for cancer care and mortality rates lagging in the UK compared to similar countries, it claimed.

The report is expected to form the basis of the new Labour-government's ten-year NHS plan, which is yet to be unveiled.

In April 2023, senior NHS doctors also warned that children with rare genetic conditions and their families were being made to wait over a year for genome sequencing results, due to delays experienced by the NHS Genomic Medicine Service, in the Guardian.