Asking questions, but we know what the answer is.

4 min read

Two members of the All-Party Parliamentary Group on Brain Tumours (APPGBT) took the opportunity to ask questions of the Secretary of State for Health and Social Care, Steve Barclay, at Westminster this week. 

Holly Mumby – Croft asked, “What steps he is taking to increase cancer survival rates?” She continued “In March, the All-Party Parliamentary Group on Brain Tumours published its report into research funding, which found that only about £15 million of the £40 million pledged has made its way into the hands of the researchers.  

“Can the Secretary of State set out what we can do to fix these challenges in the funding system so that we can get that money into the hands of the researchers and improve those outcomes?” 

The Secretary of State replied: “I welcome the fact that my hon. Friend has raised this point, because the £40 million of funding is available. That money is there, ready to allocate to quality bids. All the bids that have met the National Institute for Health and Care Research standard have been funded, but she is right to say that there is more money available, and we stand ready to work with researchers to get that money allocated as soon as those quality bids come in.” 

                                                     Holly Mumby Croft                                                     

Sarah Owen

Member for Luton North, Sarah Owen MP, said in the chamber “We’ve all seen the heartbreaking story of Lola on EastEnders, but for far too many it is a tragic reality - people like my constituents Yasmin & Khuram who lost their daughter Amani from a brain tumour.  

So far, only £13million out of a promised £40million has been allocated for research since 2018.It’s vital to get these funds to develop treatments to save lives.” 

The Secretary of State, most likely referencing the recent Tessa Jowell Brain Cancer Mission summit which Will Quince MP attended ( see here more on that event) said “The Minister of State has met with campaigners, and I know he stands ready to have further such meetings. As we touched on earlier, the £40 million is available; obviously, that needs to be allocated to research bids of the necessary quality, and the remaining money is open to researchers to bid for. I hope they will do so.” 

We know having read a written answer from Health Minister Will Quince, in response to a question from APPGBT Chair Derek Thomas, that the amount of the National Institute for Health and Care Research (NIHR) £40 million deployed is £10.7 million. 

The Secretary of State’s responses to these two questions are stale and need revision. 

Proactivity is needed by the NIHR to deploy allocated funding. 

It is a clinical priority and must be treated as such - maintaining the status quo will not change the stark facts. 

As long as the answers to these questions remain the same then the stark statistics and shocking stories will remain the same too. 

There can be hope, and there can be progress, but we must challenge a process that places the emphasis on brain tumour researchers to chase funding rather than Government funding searching for opportunities to deploy in this area of clinical priority.  

In other news from Westminster Siobhain McDonagh’s (who has a sister with a Glioblastoma – something she shared so movingly at the brain tumour research debate in March) office has tabled an Early Day Motion (EDM) to honour the life of Laura Nuttall.  

The text of the EDM is as follows: 

That this house recognises the life of Laura Nuttall; commends her positivity and hope she showed since her diagnosis with a glioblastoma in 2018; acknowledges that more needs to be done to raise awareness of the unmet need for brain tumours and accelerate the development of new treatment options and increase the amount of research funding dedicated to this disease. 

This is a lovely tribute to the incredible campaigner that Laura was.  

It would be an even greater tribute to be able to get a good number of supportive signatures and so we are hoping you will contact your MP and ask them to ‘Please sign EDM 1233 in memory of Laura Nuttall’ 

Gillian Mackay MSP (Scottish Green Party Central Scotland) tabled a Parliamentary Motion in the Scottish Parliament to mark World Brain Tumour Awareness Day. 

Gillian Mackay supporting Wear A Hat Day in March 

As at Westminster a Parliamentary Motion is a short proposal that allows MSPs to indicate their support for a particular cause.

This motion, which can be read  here, recognises that there is still significant progress to be made in the research, understanding and treatment of brain tumours and urges the Government to implement a cross-departmental approach to ensure that promising new drugs move more efficiently from the scientist's bench to the patient's bedside.

It also celebrates the work of Brain Tumour Research in developing a network of sustainable research networks across the UK, and welcomes the attention given to paediatric-focused research. 

The motion has already received support from more than 20 MSPs. 

If you live in Scotland, please get in touch with your MSP and encourage them to add their name in support of the motion. 

Contact information can be found here

The role of research was clearly illustrated at the  American Society of Clinical Oncology (ASCO) annual meeting which was held last week, with it being stated that we are seeing “an unprecedented rate of innovation in oncology. “There have been reports of positive trial and study news in bowel cancer, blood cancer and lung cancer .  

We need progress to be in brain cancer too and this news from the conference has been viewed as a source of optimism: Vorasidenib Offers Patients With IDH-Mutant Low-Grade Glioma a Means to Delay Chemotherapy and Radiotherapy. 

We need more stories like this. 

If we fund research, we will get closer to a cure, if we don't, we won’t and the stark facts surrounding brain tumours won’t change.  

We can keep asking questions and we can lobby for our elected representatives to do so on our behalf, but we know what the answer is. 

It is increased funding for discovery science because that underpins clinical innovation and leads to successful trials and studies that bring hope for the patients and families impacted by a devastating brain tumour diagnosis.  

It isn’t the cost of funding brain tumour research; it is the cost of not funding it. 

Sarah Owen MP mentioned the Eastenders brain tumour storyline in her question to Steve Barclay and this week millions watched as actress Danielle Harold picked up a prestigious award for her portrayal of brain tumour patient Lola Pearce. 

Danielle won Best Leading Performer at the British Soap Awards for her work on a storyline which saw her popular character Lola Pearce diagnosed with a glioblastoma. The accolade comes just a week after Lola’s on-screen death.  

Accepting her award, Danielle said: “This isn’t for me, this is definitely for every single person that’s worked with me along the way, that’s been directly affected by brain tumours. People who are suffering from brain tumours, their time is so precious to them and even more to me.” 

She name-checked our supporter Kylie Weatherby who is living with a terminal diagnosis and with whom she has formed a close bond after they were introduced by us. She concluded her speech by thanking the audience and said: “Brain Tumour Research you deserve this.” 

Our Head of PR and Communications Sue Castle-Smith (pictured with Danielle) has been working with the BBC on the storyline since last summer. 

She said: “Huge congratulations to Danielle and everyone at EastEnders for their sensitive portrayal of a patient’s diagnosis, treatment and death from a terminal brain tumour. As the leading voice of the brain tumour community, we were pleased to help shape this important story. It has been a tremendous opportunity to raise awareness of this devastating disease.” 

Watch Danielle accept her award here. 

On TV next week will be our great friend Sarah Beeny in Sarah Beeny vs Cancer - ‘a deeply personal authored account of the past, present and future of breast cancer treatment.’ 

Sarah became involved with us over a decade ago as her mother's breast cancer metastasised to her brain and we know what steps and improvements have been made to prevent this cancer progression in Sarah’s case was something Sarah was keen to explore in the film. 

We were truly grateful that even during the height of her treatment Sarah found time to support our campaigns and her photographs during her treatment have been an inspiration to many experiencing hair loss following chemotherapy. 

To mark the hand-in of the Back the 1 in 6 petition, the Neurological Alliance held a Parliamentary drop-in event at Westminster. 

Brain Tumour Research is a member of the Neurological Alliance, which is a coalition of more than 100 organisations working together to transform outcomes for the millions of people in England with a neurological condition. 

More than 19,000 people signed the Alliance petition calling for UK Governments to set up a Neuro Taskforce to address the key challenges identified through My Neuro Survey and improve services for people with neurological conditions. 

The Taskforce, backed by all four UK Governments, would help to address common problems including health and care workforce shortages, growing waiting lists and barriers to accessing mental wellbeing support. 

Georgina Carr, Chief Executive Officer of the Neurological Alliance, said that the global toll of neurological conditions exceeds that of all other conditions. She added: “It’s imperative we do a lot more to support those affected by neurological conditions.” 

Yesterday’s event was attended by several MPs who pledged their support, including APPGBT officer the Rt Hon Hilary Benn.

At the drop in our Public Affairs Officer Thomas Brayford chatted with Rhys Holmes (pictured together), who recently helped Brain Tumour Research respond to the Wales Cross Party inequalities inquiry (their report was published on Thursday, and we will report on this in next week’s update) – having been diagnosed with a brain tumour aged eight.

In joining with our Alliance partners, Brain Tumour Research is urging the Government to ensure that nobody is left languishing on a waiting list and that those with brain tumours and other neurological conditions can lead a life of dignity and hope. 

A fellow member of the Neurological Alliance is Epilepsy Action who have produced this excellent video which we hope some of you will find very useful. 

What to do when someone has a tonic-clonic seizure: CARE

We have been delighted to be partnering with Go Epsom, The British Hat Guild and The Jockey Club to showcase a unique fascination of hats inspired by the royal racing colours. 

Created by some of the biggest names in UK millinery, each of the 22 hats is fashioned in combinations of scarlet, purple, black and gold, the colours of the royal racing silks, to celebrate the Coronation. 

One or more of these one-off pieces could be yours as they are being auctioned to raise money for Brain Tumour Research but the auction closes on Sunday so this is your last chance to bid.  

This partnership has given us a chance to reach new audiences with our messaging and as a guest of the jockey club we were at the Derby meeting for two days at Epsom last week talking to racegoers and meeting people who had their own brain tumour stories to share. 

Hugh with milliner Lisa Tan and model and television presenter Rosie Tapner 

Finally, this week some fantastic news – with your support we have hit our first 10,000 signature milestone on our new petition calling for increased Government funding to help find a cure for brain tumours. 

We're very grateful to everyone who has helped us get to this important marker. If you have already signed, please don't forget to share with your network and encourage people to sign themselves and share far and wide. 

Each and every signature is helping to make a difference.  

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