It has been quite a week at Westminster!
On Tuesday there was a meeting of the All-Party Parliamentary Group on Brain Tumours (APPGBT).
Brain Tumour Research provides the secretariat for this group and we were delighted that our Chair Derek Thomas was joined by colleagues, Siobhain McDonagh, Holly Mumby-Croft, Greg Smith, Daisy Cooper, John McDonnell, Helen Hayes and Philip Hollobone to listen to an illuminating and comprehensive overview of the diagnosis, investigation and treatment of brain tumour patients from Mr Peter Whitfield, Consultant Neurosurgeon at the South West Neurosurgery Centre, University Hospitals Plymouth NHS Trust and President of the Society of British Neurosurgeons.
Mr Whitfield also detailed some of the advancements on the horizon in terms of treatment options which dovetailed into the next presentation which was the story of 26-year-old Shay Emerton who is unable to access a new drug called Vorasidenib even though it has shown promising results in clinical trials.
The APPGBT will take this issue forward, seeking to understand the position of the drug manufacturer Servier regarding market access in the UK. They will also investigate if there are further interventions they could make in support of UK low-grade glioma patients, including Shay, for whom Vorasidenib might be effective.
The group was also addressed by Siobhain McDonagh MP, who lost her sister Baroness Margaret McDonagh to a glioblastoma in June. Having launched her Brain Tumour Bill in Parliament last month, she updated attendees on her campaigning to improve outcomes for patients. The evening's final presentation was from Dr Nicky Huskens, CEO of the Tessa Jowell Brain Cancer Mission (TJBCM), who updated on the mission’s discussions with National Institute for Health and Care Research (NIHR) and TJBCM plans that are allied to the recommendations of the APPG’s Pathway to a Cure – breaking down the barriers inquiry report.
The life sciences industry will struggle to find a more devoted champion than former Department for Science, Innovation and Technology (DSIT) Minister George Freeman, who saw this week's Government reshuffle as his time to step aside. As a community we should thank George for his commitment to the cause of brain tumour research. He was instrumental in getting £40 million available for deployment to researchers in 2018. When in the summer of 2022 we told him of the low level of allocation he was disappointed and keen to get to the root of the problem. He is pictured above with Hugh at the launch of the APPGBT inquiry report. We are sure he will remain a powerful advocate from his constituency base and without ministerial responsibilities he is able to play a part in the APPGBT too. We look forward to engaging with his successor at DSIT.
As indeed we look forward to engaging with a new ministerial team at the Department of Health and Social Care.
Outgoing Health Minister Will Quince made himself available to members of our community, responded on behalf of the Government at the Brain Tumour Debate and famously once said to Siobhain McDonagh that he was 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."
In our communications with him we found him positive and helpful and as you can see from the photograph above he found time in his schedule to talk with Hugh and Thomas alongside the great brain tumour research advocate Lord Hunt.
Will won't be standing for re-election as an MP next year and as we thank him for his efforts on behalf of our community we also wish him well in his future endeavours.
A letter from Brain Tumour Research is on its way to his successor.
Another brain tumour related letter has been written this week to the Health Secretary from Ruth Dombey, the Leader of Sutton Council, inviting them to visit Brain Tumour Research’s newest Centre of Excellence at the Institute of Cancer Research.
Councillor Dombey stated that it had been a “delight” to have attended the launch of the new Centre of Excellence in Sutton in September, which she described as “a fantastic facility, which will generate the laboratory data needed to support the application of new clinical trials”.
The preclinical data produced at the Centre of Excellence will validate learnings from the scientist’s bench with the vision of translating them into new therapeutic hope for paediatric patients and their families.
Brain Tumour Research is hopeful that this work will lead to breakthrough trials within the next five years.
So, a week of activity at the APPGBT and comings and goings at Westminster.
As some things change, some things stay the same.
Our campaigning call for change will stay the same until the stark facts surrounding this disease change and for that to happen there needs to be a change to funding and to attitudes as to what can be done and how.
Minds need to be changed and convinced that brain tumours are a critical priority and where better to start than with the new teams at the Departments of Health and Social Care, and Science, Information and Technology.
That's it from this week's update.
Next week we will be back with news on PQs, lab tours and meetings with Parliamentarians.