Brain tumours kill more children and adults under the age of 40 than any other cancer
Will Quince’s workload and the next APPG meeting
Cancer Medicines: Appraisals was debated in Westminster Hall on Tuesday.
Siobhain McDonagh, who has spoken about her sister Margaret’s glioblastoma diagnosis and the lack of UK treatment options, said:
“Fantastic work is being done in the world of cancer.
“There are improvements in some areas with some fantastic successes, which we should celebrate.
“However, we should have our eyes wide open when we are not making any progress.
“We should be able to take stock and say, “This is not working; we need to try something new.”
“In 2018, after Tessa Jowell sadly passed away from a glioblastoma, £40 million of Government funding was promised to fund research into brain tumours, but the infrastructure of treating glioblastoma is so poor that there have not been enough bids to allocate that funding.
“As of January, just £15 million of the promised £40 million had been awarded; the field is in such a dire situation that we cannot even spend the money that has been specifically allocated to brain tumours.
“This is about trying something different.
I do not care whether it is Labour, the Conservatives, the Lib Dems, the DUP or the SNP—I will get behind anyone with the political will to make a change.
“Einstein famously said: “The definition of insanity is doing the same thing over and over again and expecting different results.”
“I think we are getting to that point with the treatment of glioblastoma.
“It is time to break the mould, take a risk and try something different.”
In his response to Ms McDonagh Health Minister Will Quince said:
“I think she knows my commitment to doing all I can to improve the situation in relation to brain tumours.
“In truth, I think I have spent more time on this particular issue in my time as a Minister than I have on any other condition under the umbrella of the Major Conditions Strategy.
“I will continue to do so, not just because of the powerful case that she makes, along with others across this House and campaigners, but because I know there is an injustice in that this area does not get the attention it deserves, and I want to address that.
“I have raised it with the Chief Scientific Adviser, who heads up the NIHR, and it is important to also raise it with NICE.”
With brain tumours occupying so much of Will Quince’s time, and of course we make no apology for that (in fact as a campaigning community we should feel proud that such a thing has been said by a Health Minister), he won’t have been surprised to have had another brain tumour themed meeting on Wednesday afternoon.
It was with APPGBT Officer and Luton MP Sarah Owen alongside the father of Amani Liaqhat, Khuram.
We have stood alongside this remarkable family for over 2.5 years and we were pleased to provide some context for Sarah ahead of the meeting and we very much look forward to hearing how the discussions progressed.
Will Quince MP, Khuram Liaquat, Sarah Owen MP
Derek Thomas Chair of the APPG on Brain Tumours which is led by Brain Tumour Research as the secretariat provider, drew on the need for innovation evoked by Ms McDonagh on Tuesday in his foreword for the Pathway to a Cure Inquiry Report launched earlier this year when he said:
“I firmly believe that the Government wants to fund brain tumour research and the researchers clearly want funding so there is supply and there is demand but the mechanism for this to function as an effective market system is broken.
“The spirit of our inquiry was to seek out the root of this breakage and, with positive intent, identify solutions to the blockages that affect the ability of the scientific and clinical communities to advance options for, and the outcomes of, those affected by this devastating disease.
"What has not changed since 2018 is that brain tumours continue to kill more children and adults under the age of 40 than any other cancer."
“We must recognise a uniquely complex disease with a unique response.
“For those in the brain tumour community, this is an emergency.”
Derek Thomas MP
There is an opportunity for everyone reading this to engage with their MP this weekend as we have a date, time and location for the next meeting of the APPG on Brain Tumours.
Here is the template invite to email your MPs. We must ensure that on the 11th we have a roomful of Parliamentarians keen to hear about why we campaign and what they can do to support and make change happen.
Please could you all send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend? Remember to Cc me ( email@example.com).
Subject; - APPG on Brain Tumours 11th July 17:00 – 18:00 Committee Room 6
Dear <Your MP’s name>
The APPG on Brain Tumours will be taking place in Committee Room 6 on Tuesday 11th July from 17:00 – 18:00 and will be chaired by Derek Thomas MP.
An agenda and a briefing document from the charity Brain Tumour Research who provide the APPG’s secretariat will be forthcoming in due course and Hugh from the charity is Cc’d.
As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients I am asking if you could please make space in your diary and join that meeting.
It would be hugely appreciated.
<Your postal address and postcode>
When the APPGBT was taking oral evidence for the Pathway to a Cure inquiry and report one of the companies involved in the oral evidence session for industry was QV Bioelectronics and last week we were interested to read that sixteen digital health and medical device startups founded in the United Kingdom have been selected for a customised accelerator at the Texas Medical Centre's Innovation Factory(TMCi).
One of the sixteen chosen is QV Bioelectronics who are “striving to deliver longer, better quality lives for brain tumour patients. Using their first-of-its-kind implantable electric field therapy device, GRACE, QV will provide effective, focal & continuous treatment without impacting patient quality of life.”
Christopher Bullock PhD CEO & Co-Founder of QV Bioelectronics told us:
"Texas Medical Centre, which includes the famous MD Anderson Cancer Center, is home to many of the world’s leading experts in neuro-oncology research. This program, funded by Innovate UK, provides QV Bioelectronics to build lasting links with those experts. QV Bioelectronics remains committed to delivering its technology to the NHS in due course but the urgent need for new and innovative treatments for brain tumours is a global challenge. QV Bioelectronics is working to develop relationships with clinical centres of excellence around the world to best support the clinical translation of the GRACE system."
The Grace system
We always look to work alongside industry to try and ensure the latest developments and progress are available to UK brain tumour patients as soon as possible and to that end, and to reference the APPGBT report again we must “simplify the regulatory process and introduce tax reliefs and incentives for investors, to encourage investment for the longer time periods necessary to develop and deliver new brain tumour drugs.”
This is the type of thing MPs can help us with and why getting as many as possible to join us at the meetings of the APPG is so vital – your help with this is so appreciated.
Last week, the Cross-Party Group (CPG) on Cancer in the Senedd Cymru (Welsh Parliament) published its landmark report, All Things Being Equal, following an inquiry into cancer inequalities in Wales.
Brain Tumour Research was one of 15 organisations to provide written evidence in support of the inquiry, and yesterday it was the focus of Delyth Jewell’s short Senedd debate.
In total, seven Members of the Senedd (MS) contributed to the debate, showing good cross-party support.
The Health Minister said careful consideration would be given to the report’s recommendations and agreed that more data are needed to address cancer inequalities in Wales.
She indicated that health inequalities remain a priority for the Welsh Government, and also that an NHS inequalities group would be created.
You can watch the debate in full here.
In our response to the recent CPG inquiry into inequalities and cancer in Wales, many of our respondents told us the cost of travel was the biggest barrier to freely accessing brain tumour services.
Many children and young people receive their cancer treatment in specialist centres, often far away from home.
This means that they and their families must travel long distances, often several times a week and sometimes this can last for years.
Not only is this physically and emotionally exhausting, but it also comes at a huge financial cost.
Young Lives vs Cancer’s recent research survey found that young people and their families:
• travel an average of 350 miles a month - that's nine hours every month, in cars, on trains, buses and ferries
• spend around £250 every month just on that travel, for things like petrol, train tickets and taxi fares
• are struggling (71%) to afford the cost of travelling to treatment
• are sometimes (1 in 10) missing or delaying their treatment because of the costs
• are going into debt, struggling to pay their bills, or are forced to give up work or cut their hours so are also dealing with a loss of income
The current financial support provided is not good enough.
Many young cancer patients and families do not qualify for the existing Healthcare Travel Costs Scheme and hospital transport is often not appropriate for those Young Lives vs Cancer supports.
At Brain Tumour Research, we believe that this is wrong and therefore we are urging our supporters to support this campaign.
You can sign their petition here.
If something seems wrong then campaign to change it because to paraphrase Einstein it is madness to continue to do the same thing but expect the results to change or as Henry Ford put it “If you always do what you’ve always done, you’ll always get what you’ve always got.”
It is the status quo that hasn’t served brain tumour patients well and that is why our petition very specifically states that the Government should recognise brain tumour research as a critical priority, developing a strategic plan for adequately resourcing and funding discovery, translational and clinical research, ring-fencing £110 million of current and new funding to kick-start this initiative.
This should lead to an annual research investment of more than £35 million a year by 2028 from the Government and larger charities in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.
If you haven’t already done so you can sign the petition here – something to do this weekend after you have written to your MP asking them to attend the APPG meeting on the 11th July.
Thank you for what you have done, are doing and will do as campaigners for Brain Tumour Research.