The Westminster Brain Tumour Research Debate

3 min read
Yesterday, on Thursday 9th March 2023, Brain Tumour Research Funding was debated in the main chamber of the House of Commons.

Before we reflect in this update on what happened, here are the links if you want to watch, or watch again what happened and here you can read the record of the debate on Hansard.

In last week’s update, I asked you to contact your MPs to request they attend the debate. In a demonstration of your astonishing willingness to actively campaign for change I was cc’d into over 500 separate emails from Brain Tumour Research campaigners to their MPs.

An extraordinary effort – thank you all.

The debate was held on a Thursday afternoon – a time when many MPs are heading back to their constituencies, when others are undertaking field trips based on their responsibilities to Select Committees and many other meetings are taking place. We only had the date confirmed a week ago and MPs diaries can be booked up for months ahead.

We were advised that to get an attendance at our debate of 10 MPs would be a success and that 15 would be the absolute top number to hope for. Clearly we aimed for as many as we possibly could and in the end including the minister 15 MPs actually made oral contributions to the debate. What we did to support and populate a lively, emotional and important debate speaks volumes of what we can do when we work together.

Many other MPs who were contacted requested the All-Party Parliamentary Group on Brain Tumours’ (APPGBT) Inquiry Report, launched earlier last week and led by Brain Tumour Research, was sent to them (every MP will get a printed copy next week) and made encouraging comments about writing letters to ministers and being fully supportive even if they couldn’t get to yesterday’s debate.

For some of the Brain Tumour Research team yesterday was such a significant day that we had to be there in person and, as we watched the debate from the public gallery, we felt proud to be a part of what the Chair of the APPGBT, Derek Thomas MP in his opening address said  “I affectionately know as the brain tumour family."

Interest in the debate had been bolstered by our PR and media team who worked night and day to place news of the report and the debate in the media with many of you sharing your stories publicly.

Again, we thank you for making that deeply personal commitment to the cause.

It does get noticed.

I spoke with Siobhain McDonagh MP before the debate and the first thing she said was that she had seen me on Sky News that weekend. Yesterday Ms McDonagh’s speech was riven with emotion as she shared the impact of her sister Margaret’s diagnosis.

I urge you to watch the powerful moment as Siobhain shared her story in the debate.

Other than her very personal story Siobhain noted that 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.”

That is, of course, true and so we wrote a letter to The Times about this which sadly did not get published however they did cover Siobhan’s contribution to the debate.

On the day of the debate we were pleased to show Derek Thomas his comment in this Express article and we were joined at the debate by Peter Realf and Maria Lester (father and sister to Stephen Realf) and both veteran Brain Tumour Research campaigners.

Maria wrote this piece for the  Huffington Post which was posted yesterday and they were mentioned a number of times in the debate.

Also mentioned was Nicki Hopkins. As her MP, Holly Mumby Croft, said in the debate “we are incredibly proud of her in Scunthorpe”. Amani Liaquat too was remembered as her MP, Sarah Owen said “Amani’s story and her parents’ determination to honour her legacy cannot fail to move us.”

There were vital contributions to the debate by John McDonnell, who became involved through the tenacious and dogged campaigning of the powerful force known as Sonya Keen and Hilary Benn spoke saying his involvement also came from a constituent contacting him – that was Rory Burke.

As mentioned previously I urge you all to look at and read what happened yesterday but to pick out a couple of points.

There was fulsome praise for the APPG from John McDonnell.

“We have hundreds of APPGs but that is possibly one of the most effective. As a result of its diligent commitment, we have in front of us an extremely professional report that the Government now can use as the guide and agenda for their work. I thank the APPG for all that it has done.”

He also made this pointed contribution

“I do not want to be here in a year’s time for another debate like this, and another report from the APPG, and to hear that it is still happening because the current report has not been implemented in full. I urge the Government to meet the APPG, establish a champion and start work on this agenda in the next couple of weeks. If they do so, we may be able to turn this around, and perhaps prevent more tragedies such as those that many of our constituents have experienced in recent years.”

In a piece of speech that could have come directly from the APPGBT report Liz Kendall MP who was there in her role as Shadow Health Minister, said: “We also must look at the issue, which many hon. Members have spoken about, of research funding getting stuck in lots of different silos. The Department of Health and Social Care and the Department for Science, Innovation and Technology must work together much more closely to ensure that early-stage research quickly progresses to clinical trials, and then to the bedsides of patients via new treatments“.

Health Minister Will Quince followed Ms Kendall and said The report makes a number of recommendations for actions by research funding agencies, such as the MRC and NIHR, on co-ordinating action and making funding available. Crucially, the report is clear that to make advances in brain tumour research we must bring together diverse disciplines. There are detailed recommendations here, with potentially far-reaching consequences, and the MRC, NIHR and I will consider responses and come back to colleagues“.

This must be a two-way conversation though with ministers considering responses and recommendations from campaigners and political stakeholders, such as all of us, and taking them back to the civil servants and Government appointed funding bodies.

Mr Quince ended on an optimistic note saying:

“To be clear, the £40 million announcement was a signal to the research community that we are serious about funding research in this space. It is not a ceiling. If we can spend more on the best quality science, let me assure the House that we will do so. I understand and share the frustrations that only a proportion of the £40 million on brain tumour research has been allocated so far, but this funding will remain available. I genuinely believe that the funding for brain tumour research is promising and we look forward to considering the all-party group recommendations with colleagues across Government. I am confident that the Government’s continued commitment to funding will help us make progress towards effective treatment”

We trust that further meetings with Mr Quince will instil that confidence in us.

Derek Thomas concluded the debate saying: “The Minister has heard those contributions, and he has the report and each of the recommendations. I am encouraged that the discussion does not end here and that the work will continue. It must, because far too many lives depend on it.”

The final word of the debate in this update goes to Greg Smith MP who said: “I would like to pay tribute to one of the most inspirational campaigners and fighters on this cause, my constituent Sue Farrington Smith, who is the chief executive of Brain Tumour Research … Sue and everyone at Brain Tumour Research are true heroes, making a daily difference. They deserve to be recognised and credited for all they do.”

We think that our campaigners are true heroes and once again we salute the 500 of you who sent emails and all of you on the ever growing campaigning database.

On our pathway to a cure yesterday was a significant day, a memorable day, but our campaigning doesn’t end there, it begins anew in the post brain tumour report, post brain tumour debate era – there will be more significant and memorable days because we are walking this pathway together and together, we will get closer to a cure.

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