Brain Tumours: Research and Treatment

Siobhain McDonagh 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 ---

[Dame Siobhain McDonagh]

Thank you, Madam Deputy Speaker, for your kind words about Margaret. I thank everybody who has taken part in the debate. I appreciate that they have been taken from their constituencies, where there will be great celebrations for the 80th anniversary of VE Day.

I thank the Backbench Business Committee for the debate. I suggested to the Committee that I did not want last Thursday because it was polling day, so when I was offered 8 May, I did not really feel that I could refuse. I say to the Minister, the shadow Ministers and all hon. Members that if we rely on the system as it is, there will be no progress. The only way to bring about progress is to intervene and to challenge. To that end, I am delighted to say that in July we will be launching the first drug trial in Margaret’s memory, to try immunotherapy on people with glioblastoma. We will be doing that only on one site, at UCL and UCLH. That is because the structure of drug trials in the NHS continues to be so difficult—this was identified by Lord O’Shaughnessy in his report—that going to more sites would take years. People diagnosed with this condition have not got years, so we all have to intervene.

Most Ministers in the previous Government and those in this Government have been incredibly well organised and well motivated. I am grateful to the Secretary of State for his intervention, which has made our trial possible at this speed, but unless we personally get involved, no great speeches, wishing or hoping will make a change. The system does not want change. We have to enforce change.

Question put and agreed to.

Resolved,

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.

[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.