Brain Cancer

[Paula Barker in the Chair]

[Relevant documents: First Report of the Petitions Committee of Session 2015–16, Funding for research into brain tumours, HC 554, and the Government response, Session 2016-17, HC 292; and Oral evidence taken before the Petitions Committee on 27 May 2021, on Brain tumour and childhood cancer research, Session 2021-22, HC 242.]

[Paula Barker in the Chair]

I beg to move,

That this House has considered e-petition 738881 relating to brain cancer research and treatment.

It is a pleasure to serve under your chairmanship, Mrs Barker. I thank Sarah Bainbridge and the rest of Brain Cancer Justice for creating the petition that has led to this debate. Although it was established only last year, it has already built a remarkable campaign and secured support from more than 109,000 people for the petition—well done and thanks very much. The petition calls for increased funding to accelerate discoveries and clinical trials, improved access to whole-genome sequencing with personalised treatment and the protection of the right of patients to try innovative treatment options.

It is not the first time that Parliament has debated this issue. Just over a decade ago, a petition calling for greater funding for brain tumour research received more than 120,000 signatures, which led to a Petitions Committee inquiry report.

I am very glad that my hon. Friend has brought this debate to us. The petition to which he refers was in memory of the son of my constituent; his name was Stephen Realf, and sadly he died in 2014. The petition calls for increased funding to reach parity with the funding for leukaemia and breast cancer. Stephen’s father Peter is in the Chamber today. Would my hon. Friend care to comment on the importance of the work done by Stephen Realf’s sister Maria back then in raising the profile of this vital issue?

I absolutely agree. I have spoken to Peter, and it was remarkable what they did then. The inquiry—there have not been many petition inquiries—was a result of the work they did, and it has certainly made sure that the subject has not gone away. That petition recognised that brain tumour patients have been failed “at every stage” of the research and funding process. As a result of that and the inquiry, some progress followed: a task and finish working group was established, and in 2018 the Government pledged £40 million for brain tumour research. However, by 2024 only £15 million of it had been delivered. Many further petitions have been brought forward by campaigners, but meaningful progress continues to stall.

I thank my hon. Friend for the moving way in which he is opening today’s debate. It has been really heartbreaking to hear from my constituent Hayley about the battles that her granddaughter Lily has had to go through to try to find effective treatments for her brain tumour. The Brain Tumour Charity has highlighted that fewer than 40% of patients with brain tumours are informed about clinical trials. Does my hon. Friend agree with its recommendation that the Government need to reflect on how every eligible patient can be informed about, and ideally have access to, clinical trials to ensure that the widest possible range of treatment options is available?

Absolutely. That is a key element of the work that needs to be done to help patients with this issue. I will refer to that later, but it is fundamental. We know that, without that research, nothing will improve and we will continue to see the terrible conditions and quality of life that people have to face.

On the brain tumour research consortium, I understand that none of the moneys to which the hon. Gentleman refers have made it to Northern Ireland’s research facilities. Does he share my concern about the need to ensure that the money reaches the whole United Kingdom to benefit our collective research, including at Queen’s University Belfast, and find a cure for everyone in this great United Kingdom of Great Britain and Northern Ireland?

I was not aware of that, but clearly it is unacceptable and makes no sense whatever. We really need to use our experience right across this nation. I absolutely agree with the hon. Gentleman.

It is a fact that in the UK brain tumours remain the biggest cancer killer of children and of adults under the age of 40. Approximately 13,000 people are diagnosed each year. For those who are diagnosed with a high-grade brain tumour, the five-year survival rate remains just 12.9%.

My constituent Emma has long been committed to achieving justice for people with brain cancer and has been writing to me about it ever since I became an MP. She has highlighted the survival rate of 12.9%. As we have already heard, research funding in this area is very low, at just 1% to 2% of overall cancer research funding. Does my hon. Friend agree that we need to increase the research funding to improve that five-year survival rate?

Absolutely. I use the word again: it is fundamental. Without it, there is no real way forward. We will continue to repeat the same treatments that we have seen for many years. Those treatments are not fully effective, as we know, so we need research to develop new and innovative approaches.

I have referred to some statistics, but we have to remember that behind every statistic is a family. Each family are pursuing every available treatment, and all too often they are turning to crowdfunding to travel overseas in search of a cure, because significant barriers continue to block progress here at home.

Workforce shortages also limit access to care. Only 40% of patients have a clinical nurse specialist, and there is a 30% shortfall in consultant radiologists. Early-career researchers lack funding and support, which pushes talent away from this field. That is especially damaging because scientists from diverse disciplines are essential for the development of new treatments.

System failures also prevent the limited available funding from reaching patients in a meaningful way. Whole-genome sequencing is not routinely available at diagnosis, and access to a clinical trial remains severely restricted.

The Mount Vernon hospital in my constituency has a cancer centre, both for trials and for treatment. Does the hon. Gentleman agree that one of the key asks that we all have of Government is to improve the international join-up so that the people doing this research can tap into the expertise of the clinicians treating patients in other countries, who in turn can learn from the expertise in the UK? Too often, because these tumours are very rare, identifying effective treatments and effective numbers for trials can be difficult for one single hospital or clinical institution.

The hon. Gentleman is absolutely correct. This work cannot be done by just one centre, either in this country or elsewhere in Europe or the world. It certainly makes sense to connect expertise more, both within our nation and with our partners, particularly in Europe but also across the US.

As of May this year, only 15 active trials were available to brain tumour patients, compared with 54 for pancreatic cancer, which is another disease of unmet need.

A constituent of mine, Daniel, passed away while he was part of the BRAIN-MATRIX study. Daniel’s tumour progressed from stage 2 to stage 4 before the pathway could properly inform his care. Does my hon. Friend agree that much more needs to be done, not only to improve primary care recognition and referral pathways for brain tumours, but to maximise access to clinical trials?

Yes, I do. At the front end, we need to improve diagnosis. I have personal knowledge of that through my youngest daughter. Unfortunately, it took some time for one of her friends to be diagnosed with this awful disease, and he is now at a similar stage, where it is extremely difficult for him to receive the treatment he needs. Diagnosis is extremely important.

Clinicians continue to raise concerns about the collection, storage and use of tumour tissue, despite the fact that it is vital to supporting research and innovation. Unfortunately, NHS trusts differ markedly in capacity and resources, creating a postcode lottery for diagnosis and advanced treatments. As we know, brain tumours are complex; there are more than 100 distinct types, nearly 40% of patients in England are diagnosed in emergency care, and the blood-brain barrier limits the effectiveness of medicines.

Such challenges have led many to dismiss tackling brain cancer as “too difficult”. That is clearly still an obstacle. We have to break the view that brain cancer falls into that box. In my meetings with campaigners, patients and families, their frustration with that notion is unmistakable. They know, as we do, that with the right support these barriers can be overcome.

The Government have recently announced welcome initiatives, including those in the Rare Cancers Act 2026, the national cancer plan and the brain tumour research consortium, supported by the £13.7 million to unite 48 hospitals, universities, cancer centres and charities in partnership with patients. However, that must be seen as just the first step. Much of this activity simply disburses the remainder of the existing funding pledged, and brain tumours still receive just 3.2% of national cancer research funding.