Brain Tumours: Research and Treatment

Judith Cummins Excerpts

Thursday 8th May 2025 Commons Chamber

[Dame Siobhain McDonagh (Mitcham and Morden) (Lab)]

I beg to move,

That this House notes that Brain Tumour Awareness Month took place in March; further notes that there has been no progress in NHS treatment of brain tumours in 20 years and that they are the biggest cancer killer of people under the age of 40; calls on the Government to demand that the National Institute for Health and Care Research take action to spend the £40 million provided by the Government for brain tumour research in 2018 for innovative and meaningful drug trials, following the death of the late Baroness Tessa Jowell; and further calls on the Government to encourage the pharmaceutical industry to undertake research into the repurposing of drugs for brain tumours and to require the NHS repurposing service to consider the repurposing of drugs for brain tumours.

On Saturday 27 November 2021, Margaret collapsed in front of me without warning. She lay on the floor convulsing in epileptic fits. By 4 am, two young doctors at University College hospital told me that she had a brain tumour. On the Wednesday, as I approached her bed on the ward, she said, “Look at that doctor. He can’t look at me—the news from that scan must be really bad. Bring him over.” Of course, as you will know, Madam Deputy Speaker, she was always right.

My brilliant sister Margaret—the fiercest, strongest, bravest, kindest woman I have ever known—had a glioblastoma brain tumour. When it comes to such brain tumours, there is an average life expectancy of nine months from diagnosis and a five-year survival rate of just 5%; there has been no improvement in NHS treatment in 20 years; and the UK is graded 27th out of 29 comparable countries for its performance. Glioblastoma was the only opponent that my sister had never beaten, but over 18 months, she gave it her very best shot.

Standing here, just six weeks before the second anniversary of her loss, I remain as determined as ever to fight for a cure for this savage cancer in the face of what can only be described as indifference from the NHS, the pharmaceutical industries, the National Institute for Health and Care Research, the Medical and Healthcare products Regulatory Agency and, I regret to say, most of the cancer charities. In fighting this, I believe that we can find a path to improved treatment for not just glioblastoma but all rare cancers. However, that will happen only if we—Members of this House, cancer campaigners, patients and the bereaved—make it happen, because the system currently conforms to Einstein’s definition of madness: it continues to do the same thing but expects different outcomes. Don’t get me wrong; the system would like to cure glioblastoma, but it is just proving a bit difficult.

What is laughingly described as the gold standard of NHS treatment has not changed in 20 years. It includes surgery, which does not actually remove the tumour, a brutal eight weeks of radiotherapy, and then as much temozolomide chemotherapy as someone can take, which in Margaret’s case was not very much. Then, nothing from the NHS. Those with savings, homes, pensions or the ability to fundraise use everything they have to travel to other countries where people believe that those diagnosed with a terminal disease should have access to all available treatments. In Margaret’s case, that person was Dr Sahinbas in Düsseldorf. As for those for whom that is not an option—and there are many—our holy, revered NHS expects them just to lay down, take their fate and die. Just as I would not let Margaret lay down and die, we should not let anyone in the UK simply lay down and die from a glioblastoma. Here is how we can change things.

First, we need early diagnosis. In the vast majority of glioblastoma cases, the neuro-oncology multidisciplinary teams can diagnose the tumour from an MRI scan. In most cases, they wait for surgery, which could take a full eight weeks from the MRI. Given that developing groundbreaking immunotherapy treatments are based on giving the drugs ahead of surgery, early MRI diagnosis would allow improvement in treatments and outcomes.

Secondly, we need drug trials. The only way to find a cure for glioblastoma and other rare cancers is through drug trials, but as those with such cancers know, there are none. NHS trials have collapsed and the pharmaceutical industry concentrates on the large, lucrative conditions: breast, prostate, bowel and lung cancers. If we believe that no cancer should be left behind in a country with some of the most innovative pharmaceutical companies and a healthcare system as universal as ours, the Government should broker a partnership between that industry and the NHS to make sure that new or repurposed drugs are trialled for all cancers. They should share the early risk; the NHS should run the trials and the drug companies should be expected to provide the drugs. Will the Minister and the Department of Health and Social Care directly support a test case project for glioblastoma treatment, in which a strategy is developed with AstraZeneca, which has set up a rare cancer unit?

Thirdly, we must keep costs down. Costs are always a barrier to more drug trials. However, trials carried out through the National Institute for Health and Care Research are conducted at a reduced cost. To keep costs down, trials into glioblastoma and other rare cancers should automatically be NIHR-badged, and all funded trials should be given access to NHS resources.

Fourthly, the mission of the Medicines and Healthcare products Regulatory Agency should be reviewed. The MHRA is the gatekeeper of drugs licensing in the UK, and it understandably requires that all data on all trials be published, but in my personal experience from speaking with pharmaceutical companies, that is a barrier to them providing their best and most innovative drugs. While I accept that all information should be published, information on drug trials should be published for their respective cancers. If a drug that was originally for lung cancer is trialled on glioblastoma, that should be recorded separately.

Fifthly, we need to change the purpose of the NHS medicines repurposing project to provide existing drugs for trial. Many of our leading medical oncologists believe that there is already a drug in use that could improve and maybe even cure glioblastoma, but it has never been trialled. That is why I am calling for the repurposing of the NHS medicines repurposing programme; we should add the aim of supplying existing drugs for the treatment of glioblastoma and other rare cancers.

I have submitted these five proposed pledges to the Government’s consultation on the national cancer plan. They are born out of my personal experience of talking to anybody who moves about glioblastoma over the last two years. I am only one MP, with a GCSE in biology, but I hope with all my heart that my submission will be taken seriously, and that the Government will grab it with both hands to ensure that nobody else goes through what my sister went through.

[Madam Deputy Speaker (Judith Cummins)]

I thank the hon. Member for that moving speech. I would like to place on the record my love and admiration for her sister Margaret.

--- Later in debate ---

[Helen Morgan (North Shropshire) (LD)]

I thank the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) and my hon. Friend the Member for Witney (Charlie Maynard) for bringing forward this debate. It has been a privilege to sit through such excellent speeches on this very important topic. I am sure that the hon. Lady’s sister Margaret would be very proud of her, and I am sure that my hon. Friend’s sister is proud of him too.

As the hon. Lady and my hon. Friend have outlined, a brain tumour diagnosis can be utterly devastating and life-changing. Some 12,000 people a year are diagnosed with a primary tumour, while many others are diagnosed with a secondary tumour that has spread from elsewhere in their body. Primary tumours are largely unpreventable, and cause the death of more adults and children under 40 than any other type of cancer. As primary brain tumours do not spread around the body like other cancer types, they do not receive the same staging categorisation.

Current NHS programmes for diagnosing cancers earlier do not include brain tumours, as they focus on targets and improvements for catching more cancers in stages 1 and 2. Nearly half of people diagnosed—49%—are found to have a so-called benign tumour, a grade 1 or 2 tumour that grows more slowly. Those tumours are not technically cancerous, so they are not covered by previous cancer plans or initiatives for improving cancer care. However, the treatment and care for patients with a low-grade tumour has long-lasting impacts and can be life-altering.

I would like to mention the experience of my constituent Madi Ruby, who has tirelessly campaigned and fundraised on this issue. She has experienced both a grade 1 and a grade 2 tumour. She first experienced symptoms of a brain tumour in 1995 with numbness in her right arm, and went on to write backwards and develop headaches. She went for a CT scan when that numbness spread to her foot and she was involved in a minor car accident. Only then was she diagnosed with a grade 1 meningioma measuring 6 cm, which was removed—she was only 23 at the time.

Although that surgery was successful, Madi developed partial epilepsy. She was eventually discharged after five years of clear scans, but as we have heard, tumours still impact lives. She has had poor mental health and become depressed, and in 2013, her brain tumour returned. That tumour has also been removed, but she still deals with partial epilepsy, constant headaches and migraines, and suffers daily. She is also an inspirational person; she has bravely spoken out about her depression, trained to be a counsellor, and is now an associate dean responsible for nursing and allied health professionals at Wrexham Glyndŵr University.

I also want to mention my constituent Shaun Burgess, who raised more than £11,000 for the Brain Tumour Charity and the Meningioma Support Group by running 3,000 miles across Shropshire last year. He was raising money after his wife Mo was treated for a non-cancerous tumour, but not everyone diagnosed with a brain tumour gets that second chance; Shaun has lost a friend to a more aggressive brain tumour.

We must end the tragedy of people losing their lives because treatment for brain cancer took too long to start. As my hon. Friend the Member for Witney has outlined, progress on the treatment of brain tumours has not been good enough. The diagnosis and treatment of cancer should be a top priority for any Government, and the UK should be a global leader in cancer research and outcomes. I urge the Minister to listen to the pleas of Members from across the House on that point today.

For so many people, diagnosis and treatment are too difficult to access. My constituency is a typical example. The major hospitals in Shrewsbury and Telford face a number of challenges and regularly have some of the longest waiting times in the NHS for cancer screening and treatment. In December 2024, just 64% of patients were treated within the 62-day period, despite the target being 85%. The average across England was much better, but still poor at 71%.

Not only do too many people live in treatment deserts, but when they are finally offered the treatment they need, it is hard to access. Anyone living in rural North Shropshire would say that. Having waited anxiously for weeks or months for a scan and the result, they then, if the news is bad, have to travel extremely long distances for the treatment they need. Most of North Shropshire is an hour and a quarter away from a radiotherapy centre on public transport. For patients with brain tumours, public transport is fundamental if they can no longer drive. One of my constituents has faced exactly that problem, having had their driving licence suspended by the Driver and Vehicle Licensing Agency after being diagnosed with a tumour. Apparently that could be remedied if his consultant provided a BT1 form, but he has not been able to get through to the doctor. In the meantime, he is trapped without freedom in a constituency with some of the worst public transport in the country.

Ongoing funding issues, which we know are a huge challenge for the Government, continue to afflict brain tumour patients in a number of ways. Another constituent of mine told me their experience after being referred to a care navigator following their diagnosis. The care navigator’s job is to contact patients on a monthly basis, seeing whether they have any problems and concerns and guiding them through an experience that is extremely traumatic. However, the care navigator position has now been cut, and my constituent has been left in the dark, with growing anxiety and no one to speak to. No one should be going without treatment because there is not enough equipment, and no one should suffer because there are not enough staff to support them.

What would Liberal Democrats do? We would recruit more cancer nurses, so that every patient has a dedicated specialist supporting them throughout their treatment. For brain tumours, we would like to see an improvement in diagnosis, the care people receive and the range of treatment options available. Diagnosis targets need to reflect the fact that brain cancer does not occur in stages in the way that other cancers do—otherwise, we risk brain tumours falling through the cracks of NHS targets and objectives. Low-grade brain tumours, such as that suffered by Madi, need renewed attention, including in the upcoming cancer plan, which we look forward to seeing.

The Liberal Democrats have committed to boosting cancer survival rates more generally by passing a cancer survival research Act, which would require the Government to co-ordinate and ensure funding for research into the cancers with the lowest survival rates, such as brain tumours. We would halve the time for new treatments to reach patients by expanding the Medicines and Healthcare products Regulatory Agency’s capacity and ensuring that every patient starts their treatment for cancer within that 62-day urgent referral target. We would replace ageing radiotherapy machines and increase their number so that no one has to travel too far for treatment. Measures such as Margaret’s law, which the hon. Members who secured this debate have pressed for, would be an important step in the right direction to improve research in glioblastoma in particular, and I urge the Minister to consider that too.

Do the Government have any future plans for allocating support to research into vaccine treatment for brain tumours, which has reportedly shown remarkable progress against glioblastoma in recent studies? Too many patients with brain tumours have been let down by previous Governments over many years, and I hope that this Government will step up and make brain tumours, cancer and NHS care their No. 1 priority.

[Madam Deputy Speaker (Judith Cummins)]

I call the shadow Minister.

--- Later in debate ---

[Ashley Dalton]

NHS England has found that creating that environment does not necessarily provide new and better ways of repurposing drugs, and that can be done far more efficiently and far less bureaucratically by using local off-label prescribing. We are looking at how we can incentivise researchers and clinical trials to explore repurposing drugs.

We are determined to make the NIHR and other funders grasp opportunities to support those proposals. We will help researchers work with industry and clinicians to strengthen the evidence base for new drugs.

The NHS is working hard to diagnose and treat cancers on time. There is more to do on early diagnosis and faster treatment, in order to improve patient experience and survival. The NHS is focused on improving diagnostic waiting times, and on providing MRI, CT and other tests to reduce cancer waits, because, as Lord Darzi’s investigation has shown, we face significant challenges if we are to bring this country’s cancer survival rates back up to the standard of the best in the world. We know that the best way to improve survival for those with brain tumours, and with all cancers, is to diagnose patients early and treat them quickly.

In our first six months, 80,000 more patients received a diagnosis or an all-clear within 28 days than did in the previous year, thanks to investment in cutting NHS waiting lists. In March, more than 80% of patients in England referred for cancer had it ruled out or diagnosed within 28 days—it is the first time that target has been met in years—but we must go further, and we will. Our reforms to cancer care will see more than 100,000 people diagnosed faster, and thousands more starting treatment within two months across the NHS.

There is no single solution to this complex challenge. That is why my right hon. Friend, the Secretary of State, has been clear that there will be a national cancer plan published later this year. This plan will ensure that rarer cancers, including brain cancers, will not be left behind. It is my absolute privilege, as a person with cancer, to be driving that cancer plan. I am delighted that we have so far received more than 11,000 representations as part of the call for evidence. I can assure my hon. Friend the Member for Mitcham and Morden that her contributions and all others will be taken seriously.

The Liberal Democrat spokesperson also talked about low-grade cancers. There is a difference between staging and grading, and it is important that we are clear about that. Low-grade brain tumours are considered non-cancerous, and they grow more slowly and are less likely to spread, but although low-grade brain tumours are generally non-cancerous, they can have similar serious symptoms, and require surgery or radiotherapy to treat them. The Government are investing in new life-saving and life-improving research to support people diagnosed with those cancers.

In closing, for those affected by this devastating disease, every discovery, every treatment and every moment matters. We recognise that more needs to be done to stimulate high-quality, high-impact research into brain tumours. Through our targeted package of support, that is what we will do. We completely understand the strength of feeling on this issue, not least because three Ministers in the Department of Health and Social Care are cancer survivors. We know how terrifying it is to receive a diagnosis. We have sat in waiting rooms, hoping for good news and fearing the worst—and we have heard the worst. We have had those difficult conversations with our loved ones and seen the devastating impact on their lives. That is why we are committed to making a real difference for patients with brain cancer. We will leave no stone unturned until they get the first-class care that they deserve. I look forward to further discussing how we can achieve this when I meet members of the all-party parliamentary group on brain tumours next week.

[Madam Deputy Speaker (Judith Cummins)]

I call Dame Siobhain McDonagh to wind up.

--- Later in debate ---

[Jim Shannon]

On a point of order, Madam Deputy Speaker. I am sorry to ask this, but we need to understand what is happening about the trade negotiations and the statement that may be coming. I ask because three of us here—the hon. and learned Member for North Antrim (Jim Allister), the hon. Member for Dundee Central (Chris Law) and I—have planes to catch. I understand that others in the Chamber have made travel arrangements as well. If the statement is not happening, let us go.

[Madam Deputy Speaker (Judith Cummins)]

I thank the hon. Member for his point of order. While Members are aware that a statement is expected on trade negotiations, I have no further information on the timing. His comments are now on the record. I suspend the House until further notice. The Annunciator will give further information, and bells will be rung before the House resumes.