Siobhain McDonagh – 2023 Speech on Brain Tumour Research Funding
The speech made by Siobhain McDonagh, the Labour MP for Mitcham and Morden, in the House of Commons on 9 March 2023.
I crave the indulgence of the House for the speech that I am about to make.
On 27 November 2021, my beautiful, unique, tough, resilient, successful sister collapsed in front of me and had a series of fits. Five hours later, in University College Hospital, two doctors named Henry told me that they suspected that she had a brain tumour, but as this was the NHS, MRI scans were not done at the weekend, so they could not confirm their diagnosis. On Wednesday, when I stepped on to her ward, she demanded—and everybody here who knows her will be able to hear her say it—that I ask the ward doctor to come and speak to her. She said, “It’s bad, Siobhain, because he can’t look at me.” And it was.
For the woman who had run Labour’s only two consecutive successful general election campaigns, and achieved her ultimate ambition to see two full-term Labour Governments, the diagnosis was of a glioblastoma. All her toughness evaporated, and there was my little sister with a diagnosis that meant that she might have nine months left—a condition for which there was no cure, for which treatment had not made progress in over 30 years. Just before Christmas, she had the tumours removed by two amazing female surgeons, Róisín Finn and Anna Miserocchi at the National Hospital for Neurology and Neurosurgery, but this was post Brexit, so there were not enough nurses to keep all the operating theatres open, and Margaret’s operation was cancelled three times. I leave it to Members to guess my reaction to that, and how we got that operation in the end.
The best piece of advice I have ever received in my life, and I have received many bits of good advice, was from the clinical nurse specialist. When we asked her where Margaret should go for post-operative treatment— St George’s, down the road from where we live; the Royal Marsden, around the corner; or to stay at University College—Róisín said, “We have Professor Paul Mulholland, and he is the best. He is the best in the UK, and he is the best in Europe.” I want to confirm to the House that he is the best. He is why Margaret is still alive.
What you get when you have your tumour removed, if you live that long—many people do not—is six weeks’ radiotherapy, followed by six months’ chemotherapy with a drug called temozolomide. That drug was introduced in 2005, and since then there have been no variations to the gold-standard treatment in our NHS, so when you read articles such as the one in The Times on Monday, telling us all how successful cancer treatment in the UK is—how 85% of people with a breast cancer diagnosis, 55% of people with a bowel cancer diagnosis, and 98% of people with a prostate cancer diagnosis will get to live for 10 years—do not believe that it is the same for brain cancer. The Times may have chosen a brain as the photograph for the top of the article, but those statistics do not apply.
Margaret had her treatment in early new year 2022; like so many, she could not go through with it—the treatment would have killed her. At that point, where do you go? There were no alternatives. It is not that there are a few trials: there are no trials, and there is nowhere to go. So, like so many of us who are lucky enough to have friends and family and access to money, we looked to the private sector and international travel. Margaret has been on a course of treatment with nivolumab, a Bristol Myers Squibb drug that was seen to be unsuccessful in the treatment of brain cancer, and Avastin, and has been going monthly to Düsseldorf, Germany for four days. That might seem an easy thing to do, but taking a seriously ill person on an aeroplane to a hotel, with no access to healthcare and no emergency services, would be foolhardy unless there was nothing else in this country. There was, and is, nothing.
The help that we received from Dr Sahinbas and his wife, who runs their small clinic in Germany, with hyperthermic treatment was amazing. Their kindness was overwhelming, but there were times when I thought that I would not be able to get Margaret on the plane—that somebody would stop her because she was so unwell. There was one night when I stayed and stared at her, because I did not think she was going to make it through the night, and how would I explain that to anybody?
By June 2022, Margaret had a scan, and they could not see the tumour. When I asked Dr Mulholland, “Is this normal for this treatment?”, he said, “Normal? I have never tried this on anybody before.” Nobody has ever had this drug so early in their treatment or at the quantity that Margaret has had it, or at the same time as hyperthermia therapy. Those who know about Margaret’s experience have come to me and sought support from Dr Mulholland because there is nothing else. The number that the NHS is currently forsaking and, for the lucky people who can get the funds to do it, abandoning to international travel is nothing short of a complete and utter national scandal. I wonder what my mum who came here in 1947 to train as part of the first generation of NHS nurses from Ireland would say about the NHS abandoning her daughter.
But things can be different. Things can be better—maybe not today, maybe not tomorrow, maybe not next year, and maybe not within Margaret’s lifetime—and they can be different if we want them to be different. I ask the Minister to please not give the NHS or the cancer research charities any more money until they guarantee that at least 200 sufferers every year get access to a trial—that would be 1,000 patients over the lifetime of a Parliament—because with those trials we can begin to understand what works and what does not.
The Minister should give no more money to the NHS trainers until they commit that every young doctor training to be a medical oncologist has to go through a course on brain tumour. At the moment, there is no compulsory training. The reason why there is nobody on those wards and nobody doing the work is that we are training nobody, and we are training nobody because nobody is required to do the course, and it was like that 15 years ago with melanoma. Some 15 years ago, the survival rates were so poor, but somebody came up with the idea that immunotherapy would be successful, and today we see successful survival rates equivalent to the best in any discipline. We also see young doctors wanting to take on the specialism, because it is exciting, there is hope, there is a future and there are alternatives.
Who in their right mind today would become a medical oncologist in glioblastoma? There is no hope, no future, no trials—nothing. It would have to be someone with the belligerence and tenacity of my sister Margaret, and we have found that person in Paul Mulholland, but there needs to be more Pauls and more determination. We must have access to trials for 200 people and the training of medical oncologists, and we must require the pharmaceutical industry—because we will make no progress without it—to trial every drug that gets licensed to deal with tumours on those with brain tumours, so that there is access to existing drugs that can be repurposed.
I am sorry about the time I have taken for this speech, but I want to tell the House that when I go to bed tonight I will keep my ear open for Margaret to hear her call my name, I will get up and I will go into her room, and it may be that she is asleep and I have imagined that she has called me. I accept that. That is my duty. It is what I have learned from my family, from my faith and from my politics. I accept that. That is my duty. It is what I have learned from my family, what I have learned from my faith, and what I have learned from my politics. I accept my responsibility. All that I want is for the NHS, cancer research charities, and pharmaceutical companies to stand up and accept their responsibility, and give some hope to the 3,200 people who will be diagnosed with a glioblastoma this year.
