Advanced Brain Cancer: Tissue Freezing

Caroline Johnson Excerpts

Wednesday 7th January 2026 Westminster Hall

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

It is a pleasure to serve under your chairmanship this morning, Mr Western. I thank the hon. Member for Caerphilly (Chris Evans) for securing this debate, and the cancer charities, including Brain Tumour Research and Brain Tumour Charity, who provide invaluable support to my constituents. I also thank Owain’s family for their important campaign. I want to recognise the contribution of the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh), who has shown such incredible energy and dedication to the cause over the last few years. It is impressive to get a trial up and running that offers real hope to people, so I thank her for that work.

Each year sees around 13,000 new cases of brain and central nervous system cancers and 5,500 deaths. As has been said already this morning, brain cancers are the leading cause of cancer-related death for those under the age of 40. As a doctor and a granddaughter, I have witnessed the devastation that brain cancers can exact on patients and their loved ones. Despite advances in detection, neurosurgery and radiotherapy, the mortality for brain cancers has barely changed since 2000, whereas the most common cancers have seen substantial decreases over the same period. Demographics are working against us. Epidemiological modelling indicates that a quarter of the growth in brain cancer cases can be attributed to population ageing, a pattern that is expected to continue in the coming decades.

Research published last year found that in England the median survival for patients with a glioblastoma was seven months. It rose to 16 months for patients with the most aggressive treatments. The reason those patients survived longer is because they had access to personalised treatments, experimental drugs or trial pathways, and much of that begins with tissue freezing. Two people can be diagnosed with glioblastoma, but their underlying genetics can be completely different. Frozen tissue enables a pathologist to undertake gold standard genomic sequencing, which not only leads to a more precise diagnosis, but helps doctors predict how a tumour is likely to behave, identify more personalised treatment strategies based on the genetic mutations driving the tumour, and determine whether the patient would be able to benefit from clinical trials that are available.

Unfortunately, as we have heard, access to genomic sequencing is characterised by stark geographic inequality. High volume specialist centres, typically in urban areas, are more likely to have established tissue freezing and integrated genomic diagnosis than centres serving more rural communities. A report by the Tessa Jowell Centre of Excellence found a nearly 300% increase in whole genome sequencing activity since 2021, and around three in 10 NHS centres within its network were still not requesting it. Among centres that do freeze tissue, the activity rates vary from zero samples to several hundred, and diagnostic times are worsening. The median time from tissue collection to final integrated molecular diagnosis in 2024 was 21 days, whereas the benchmark is 14 and only 30% met that. What does the Minister intend to do to improve that speed?

Tissue freezing is a basic requirement for advanced testing, but every year thousands of patients’ tissue samples are soaked in formaldehyde and embedded in wax blocks. Although formalin-fixed paraffin-embedded tissue preservation has been used in pathology labs since the early 20th century, it is not adequate for molecular work because it causes the cross-linking and fragmentation of nucleic acids and protein, meaning that any DNA or RNA that is extracted is degraded and often unsuitable for genomic sequencing and creating those important personalised cancer therapies. The British Neuro-Oncology Society has described FFPE as “suboptimal”. It results in patients being locked out of cutting-edge treatments, regardless of clinical suitability, with knock-on effects on patient outcomes and the pace of scientific research. Will the Minister explain why FFPE, rather than tissue freezing, is still determining access to personalised brain cancer treatment for some NHS patients?

The Government’s 10-year health plan anticipates that by 2035 half of all healthcare interactions will be informed by genomics. That is a bold mission, but the contributions to today’s debate show that there is a gap between where Ministers want to be and where we are at the moment. In response to a written parliamentary question, the Government acknowledged:

“Information on the number of NHS trusts in England that have facilities for fresh freezing brain cancer tissue samples is not currently collected.”

That is a serious problem, because without the data it is difficult for Members and cancer charities to ascertain whether progress is being made, and for the Minister to make progress on delivery. Will the Minister confirm whether her Department has plans to start collecting that information? If it does not, why not?

Patients should always be fully informed before they have treatment, and it has been disturbing to hear today that some have not been given all the information, particularly about what will happen to the tissue afterwards and the potential consequences of that. What are the Government doing to improve the consent process in such cases to ensure that, before the biopsy, patients are fully informed about what is happening to their tissue and are given the choice?

We have heard that sometimes only a small percentage of the tissue is frozen, limiting the treatment options available. Will the Minister tell us why that is the case, and what she is doing to improve the proportion that is frozen? Every trust taking brain cancer samples must have the capacity and facilities to freeze the tissue they obtain.

We are all waiting for the delayed cancer plan, which we expect to be published on World Cancer Day. I have said before that I think delaying it for presentational purposes is wrong, but I hope it will be published soon. Will the Minister confirm that the cancer plan will deliver fully informed consent, provide the necessary capability—both human resource and equipment—for freezing, and ensure that the research landscape improves, in terms of both ease of access and financial metrics, to encourage UK research investment?

Everyone in this House wants treatments to improve and a cure to be found. I know the Minister is hugely committed to this issue and is working hard on it. I am interested to hear her response and to see the cancer plan, which she has been working on, as soon as possible.