Brain Tumours

Debate between Siobhain McDonagh and Nigel Evans

1st reading
Wednesday 28th February 2024 Commons Chamber

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

I beg to move,

That leave be given to bring in a Bill to set a target for the number of glioblastoma patients who take part in clinical trials each year; to require training for medical oncologists to include training relating to brain cancers; to provide that any drug that has been licensed for use on tumours must be trialled on people with brain tumours; to make provision in relation to neuro-oncology multidisciplinary teams in the NHS, including a requirement that each such team must include a medical oncologist; to require manufacturers of drugs licensed to treat tumours to make those drugs available in specified circumstances for clinical trials relating to brain tumours; to make provision about the application of funding caps on funding for multi-drug treatments for glioblastoma brain tumours; to make provision about the processes for funding of drugs intended for the treatment of glioblastoma; to make provision about the management of drug trial data, for the purpose of increasing the quality of data relating to glioblastoma patients; to make provision about reviewing the allocation of existing funding for brain tumour research by the National Institute for Health and Care Research; to make provision about the direct referral of patients by optometrists to accident and emergency departments for the purpose of diagnosing brain tumours; and for connected purposes.

The reason I am speaking again about this terrible disease is a personal one. It is why this campaign will always feel different from the other campaigns I take on. On 24 June 2023, I lost my wonderful sister Margaret to a glioblastoma brain tumour. As soon as Margaret received her diagnosis, we found out just how bad the treatment was, how the life expectancy was nine months and how there had not been a new treatment on the NHS for 30 years. We found out that families in the UK were left to crowdfund and sell their houses to fund private treatment, and that they would have to take their very sick family member on to a plane and fly thousands of miles to access healthcare in Germany or the United States. That is why Margaret started her final campaign: to find a cure for glioblastoma brain tumours. When Margaret passed away on 24 June, it was left to me to take on that battle. Her mission is now my mission. The Government have left the disease in the “too difficult” pile for too long, and I am here to put finding a cure back on the Government’s agenda.

The second reason I am making this speech is above us in the viewing Gallery: I am incredibly grateful that a number of patients’ families have come to the House to hear the speech, and their support is a reminder that 3,200 people are diagnosed with a glioblastoma brain tumour every year. It is not just Margaret who was forced to fly thousands of miles to access the treatment that should have been provided on the NHS, but families up and down the country who are being failed and who deserve better. Having cared for someone with a brain tumour, I know how bad things are, and I know that if we try something different, we can give people diagnosed with this deadly disease some hope. This is my something different.

No. 1 is the pharmaceutical industry. Dr Paul Mulholland is Europe’s leading medical oncologist in glioblastoma. He believes that we are on the cusp of a cure and he would like to run clinical trials so that he can turn that belief into a reality, but the pharmaceutical industry has refused to donate the drugs he needs for those trials to take place. That is because glioblastoma is a very small market for those companies. With only 3,200 people diagnosed each year, the investment is just not profitable —there is not much money in it, and the companies are not interested. That is why, as policymakers, it is our job either to encourage or to force the pharmaceutical companies to provide the drugs for these trials.

I will give just one example. In October, I met Moderna to ask if it could donate medicines for a clinical trial of 10 patients. I had hoped that it would give clinical access to its mRNA pipeline to help find a cure, but it refused. This company with annual sales of $4 billion refused to donate drugs for 10 people at a maximum cost of half a million pounds. These drugs could save thousands of lives each year, so Moderna’s refusal is shameful.

The House will be interested to hear that Moderna has published an environmental, social and governance statement on its website that says it has

“a responsibility to the multitude of patients our technology could help, regardless of whether they have a disease shared by millions, or one that is unique to them alone.”

The statement says that Moderna

“understand what our stakeholders expect from us as a sustainable responsible business and leader in mRNA medicines.”

Those words are clearly meaningless.

I do not mean to sound pessimistic, because some companies have been very supportive—I have had wonderful conversations with Roche—but where companies such as Moderna have the funds and the medicines but lack the will to find a cure for brain tumours, I think it is the Government’s duty to step in and legislate to ensure that they do.

The second difference is about regulation. We need to ensure that our regulators incentivise the pharmaceutical industry and clinicians to do as many clinical trials as possible. Right now, the pharmaceutical industry sees the Medicines and Healthcare products Regulatory Agency and the National Institute for Health and Care Excellence as a barrier, as a reason not to do clinical trials in the UK. That needs to change. For starters, when a pharmaceutical company is trialling a drug for glioblastoma and another disease such as melanoma, the MHRA should allow it to submit its data separately, so that glioblastoma patients’ results do not adversely affect the application.

Funding treatments as a package has been a major impediment to the industry. We can solve this issue if NICE funds each drug used in the treatment of glioblastoma separately. We will make progress if we make those changes, but we should not stop there. We need a whole host of policy changes if we want to make a change. If we carry on with the same old processes, we will get the same old results, which in the case of brain tumour research is failure. We also need a target of getting 200 glioblastoma patients each year into clinical trials on drugs that have the potential to change the course of the disease.

We need the NHS to ensure that every neuro-oncology multidisciplinary team has a medical oncologist as a core member, so that brain tumour patients are not left in a corner of the ward because there is nobody to fight for them. The NHS should make it easier for optometrists to directly refer patients straight to A&E for a scan without going through their GP.

On Monday I met the Anticancer Fund, which is based in Brussels, and I think I have discovered the one benefit of Brexit. Brexit means that the NHS medicines repurposing programme has been able to identify drugs that were initially purposed to cure another cancer, and that is exactly what we need to tackle brain tumours.

The NHS should require that every doctor training to be a medical oncologist goes through a mandatory course on brain tumours, which takes me to my final recommendation. In 2018, after Tessa Jowell sadly passed away from glioblastoma, £40 million of Government funding was promised to fund research into brain tumours. As of January 2024, just £15 million of that £40 million had been awarded. That is a real failure of government. The MHRA should be shouting loud and proud about how much money is available for investment in brain tumour treatments, but it does not and I cannot understand why.

For as long as there is no progress and I am a Member, I will come back to the House at every opportunity. I came into politics to fight for people who are not heard, and there are few people heard less than those who suffer from glioblastoma.

Question put and agreed to.

Ordered,

That Dame Siobhain McDonagh, Will Quince, George Freeman, Tracey Crouch, Steve Brine, Helen Hayes, Paul Blomfield, Sarah Owen, Dame Meg Hillier, Daisy Cooper and Wes Streeting present the Bill.

Dame Siobhain McDonagh accordingly presented the Bill.

Bill read the First time; to be read a Second time on Friday 19 April, and to be printed (Bill 169).

[Mr Deputy Speaker (Mr Nigel Evans)]

Your campaign is one of Margaret’s legacies. Thank you, Siobhain.

Brain Tumour Research Funding

Debate between Siobhain McDonagh and Nigel Evans

Thursday 9th March 2023 Commons Chamber

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

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.

[Mr Deputy Speaker (Mr Nigel Evans)]

That was a very brave speech, Siobhain. And please send our love from Parliament to Margaret.

Points of Order

Debate between Siobhain McDonagh and Nigel Evans

Tuesday 1st November 2022 Commons Chamber

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

On a point of order, Mr Deputy Speaker. In Prime Minister’s questions last Wednesday, the Prime Minister stated:

“I am pleased that we had a record number of new homes built in the last year”.—[Official Report, 26 October 2022; Vol. 721, c. 297.]

Department for Levelling Up, Housing and Communities quarterly data for the most recent year shows that 174,930 homes were completed in 2021; however, a higher number of properties were built in several years between 1969 and 1990, and an even higher number were built as recently as 2019, despite the figures being far below the Government’s own target. Stating that a number is “a record” clearly implies that it is the highest number that has been achieved. Given that the number of new homes last year is neither a record nor even close to a record, will you advise me on how that can be corrected?

[Mr Deputy Speaker (Mr Nigel Evans)]

I thank the hon. Member for giving notice of her point of order. She will know that the Chair is not responsible for any answers that Ministers give from the Dispatch Box, but those on the Treasury Bench will have heard what she had to say and there will be plenty of opportunities for her to pursue this matter, as I am sure she will. It is a judgment for the Prime Minister as to whether he wishes to correct the record, but the hon. Member has an opportunity at PMQs tomorrow, if she can catch the Speaker’s eye.

Sri Lanka

Debate between Siobhain McDonagh and Nigel Evans

Thursday 18th March 2021 Commons Chamber

[Siobhain McDonagh]

I thank all the hon. and right hon. Members from across the House who have taken part in this debate. Their commitment to the minority community of a small island is very much appreciated, but their interest is because of the hard work of the members of the Tamil community. They simply cannot forget the relatives they no longer have, the relatives who they have no idea where they are, the relatives who were bombed in hospitals and the relatives who were left on beaches having lost their limbs by a Government now led by the same men who did that to members of their family.

This debate is about the credibility of the British Government in taking seriously the loss and distress of a community in this country—half a million who work hard, do their best and contribute greatly to our nation. Are we serious about representing them, or do we believe that Governments who have powerful friends should be allowed to behave as they like?

I suggest that the Government of Sri Lanka only understand very firm action. To rely on that Government to seek out those who committed the atrocities or to take action is simply a fool’s errand, and it has to stop. We have to seriously mean that we will help the Tamils in this country to find their relatives, to know what happened, and to allow their relatives to live in a community where they are able to vote, to take part and to believe that their views are taken seriously.

Question put and agreed to.

Resolved,

That this House notes with concern the reports of a systematic attack in Sri Lanka on democratic governance, the rule of law and human rights including renewed discrimination against the Tamil and Muslim communities; is profoundly concerned that the Sri Lankan Government has refused to investigate accusations of war crimes including by key members of the current government and has withdrawn from the UN Human Rights Council Resolution 30/1; welcomes the significant leadership role played by successive UK Governments at the Human Rights Council and urges the Government to provide clear policy direction and leadership to ensure a new substantive resolution is passed at the upcoming Council session in March 2021 that will enable continued monitoring by the Office of the High Commissioner for Human Rights and mandate a mechanism to gather, preserve and analyse evidence of violations for future investigations and prosecutions; and calls upon the Government to develop a consistent and coherent policy to assist the Sri Lankan people through its trade, investment and aid programmes, and in its diplomatic and military relations.

[Mr Deputy Speaker (Mr Nigel Evans)]

We will suspend very briefly for the cleaning of the Dispatch Boxes.

Covid-19: Cultural and Entertainment Sectors

Debate between Siobhain McDonagh and Nigel Evans

Tuesday 2nd March 2021 Commons Chamber

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

On St Patrick’s Day 2020, the Chancellor stood at the Dispatch Box and made it clear that events companies with rateable properties would not have to pay business rates. However, the decision was discretionary, and by the time it reached local authorities many said that such companies were not eligible. How can a company be required to pay business rates if it is prevented from doing business, and can I ask the Minister: why is this support a lottery by borough?

[Mr Deputy Speaker (Mr Nigel Evans)]

I am terribly sorry to the hon. Lady for the short contribution and to all other Members who failed to get in. We now have the wind-ups.