On Wednesday we were on a MS Teams call, alongside nearly 50 representatives from other cancer charities, with the Minister of State for Social Care, which includes major diseases such as cancer, Helen Whately MP. We had 30 minutes of the minister’s time and the first 15 of those minutes were given over to her explaining her current key priorities.
Broadly described these are:
- Service recovery and getting back on track post pandemic
- Faster and earlier diagnosis
- Less common cancers and non-specific symptom (unexplained weight loss, fatigue, abdominal pain, nausea) pathways
- Research – the minister was keen to stress the role of the National Institute for Health and Care Research (NIHR) and the sums of money that have been made available for them to grant
- The Major Conditions Strategy that is being developed to deal with the burden of ill health.
An important point was made by her about the previously announced Cancer 10 Year Plan which was dropped in favour of the Major Conditions Strategy.
The minister confirmed on Wednesday that input and feedback made for the original plan would be carried forward to the planning of the new strategy and therefore the input of charities back in October last year would not be lost. This is good news that the hard work we, alongside many cancer charities, did to feed into the 10-year plan won’t be lost.
In the Q & A for the final 15 minutes with the minister, all attendees were eager to ask the minister questions relevant to their own disease area. What the organisers did was to set up a survey to gather common concerns and then cherry pick questions that they thought best represented the overall viewpoints and concerns of the charities attending.
We were pleased to submit our question on challenging silo thinking and promoting cross departmental working and waited patiently for our question to be asked by the person moderating the call.
This was an opportunity we tried to take advantage of but couldn’t (we will try again of course, we are campaigners).
Will Quince MP and Helen Whately MP
A different opportunity presented itself in the corridor of County Hall in London on Tuesday.
Waiting to go into the room that was holding a brain tumour summit convened by the Tessa Jowell Brain Cancer Mission we spotted the Minister of State for Health and Secondary Care (his responsibilities include the NIHR and with that; medicines and medicines regulation (pharmaceutical price regulation scheme, uptake of new drugs, medical technology, medicines supply, medicinal cannabis, antivirals and therapeutics) Will Quince MP (who was going to address the roundtable later).
As he was standing alone, we took the opportunity to introduce ourselves as the providers of the secretariat of the APPG on Brain Tumours and to introduce the APPG report ‘Pathway to a Cure’ – which he was already aware of - and to thank him for his response on behalf of the Government at the brain tumour debate.
We discussed the APPGBT inquiry and the finding that “the current funding system is unfit for purpose. The research funding system has been built in silos and needs to be joined up from basic science through to clinical trials.”
This then became an opportunity to plant in his head our plans for the next meeting we want to hold with him on ways for closer cross-departmental working and to gain his agreement that this was indeed a way forward.
A snatched opportunity taken.
After the roundtable meeting, we chatted with representatives from the NIHR and the subject of the unspent money from the £40 million allocated in 2018 came up.
Their position remains that the money is there for the right applications, but this is something we won’t let go of because we know it is a matter that frustrates our community and this money, and more, must end up in the hands of those who hold the key to the brain tumour puzzle but need funding to unlock it.
We were pleased to learn that the NIHR briefed Will Quince ahead of this roundtable and made constant reference to the APPGBT report when doing so.
When it came to the Minister's presentation to the meeting he spoke about brain tumours as an issue that ‘transcends party politics’, he said that we must prioritise a life science community with transformation and innovation at its heart and told us that he didn’t want brain tumours placed in the 'too difficult box’ because “I don’t believe in the too difficult box.”
Mr. Quince continued that the Government is fully committed to funding high-quality brain tumour research and that the funding pot is potentially much bigger than what remains of the £40 million and he and colleagues “desperately” want it (the £40 million) spent and indeed “more to be spent.”
There was an added poignancy to the moment when the Minister, whose son Robert survived to full-term but was stillborn, said “no parent should have to suffer the grief and anxiety of losing a child”.
Parent’s grief and the unspent money were the centre points of this article we worked with The Guardian on and was published in March – we were pleased that George’s parents were able to attend the roundtable and their input focused and visibly moved others in the room.
Will Quince has certainly been made aware of our cause this week as he also replied to the question asked of him by the Chair of the APPGBT Derek Thomas MP last week.
Derek’s question was “To ask the Secretary of State for Health and Social Care, with reference to the Minister of Health and Secondary Care’s oral contribution of 9 March 2023, Official Report, column 509, on Brain Tumour Research Funding, if he will provide a breakdown of the £33.9 million spent on brain cancer research in the last five years.”
The minister replied with this table:
The information gathered from this PQ gives us plenty to think about and plenty of opportunities for further questions.
On Wednesday the Welsh Government (The Senedd) held a short debate with the theme “Why Wales needs a strategic plan to prioritise brain tumour research” which was hosted by Peter Fox MS (Member of the Senedd).
This debate was a direct result of the awareness event we held in Cardiff last month, which on that occasion was supported by Mike Hedges MS.
Mr Fox’s opening statement was heavily inspired by the findings of the APPG on Brain Tumours Report ‘ Pathway to a Cure’ but clearly angled toward a Welsh political audience and we were very pleased to have had the opportunity to work closely with him on this and thank him for his kind words when saying “I would like to commend the charity for the sterling work it does, day in, day out, in raising vital awareness surrounding brain cancer.”
It did contain his own experience too as his mother was lost to a brain tumour and as he said “we know that the tumour robbed her of at least 10 years.”
Mr Fox concluded that “the time for inaction is over. Our next actions could make a huge difference to those diagnosed and their families.”
Other interventions and personal stories were shared by MSs including by Mark Isherwoood who is pictured here with our Policy and Public Affairs Officer Thomas Brayford and our Community Development Manager West & Wales, Mel Tiley.
With huge poignancy and sadness Jack Sargeant MS made special mention of Aaron Wharton who passed away last month aged 7 and of his parents Nicola and Lee. He said of brain tumour research “this is an endeavour I fully support, and I hope that in Aaron’s memory, I hope the Welsh Government can support too.”
It was then time for the Minister for Health and Social Services of Wales Eluned Morgan MS to respond to the debate and, although she didn’t commit to the meeting with stakeholders as requested by Mr Fox preferring to focus more on wider cancer treatments and research in Wales, she did say “I'm extremely grateful for the opportunity to discuss this issue with you today to highlight the importance of brain cancer research for us as a Government, and to give you a clear idea of its role in the context of the cancer research strategy and in the broader research environment here in Wales.”
This provides us with encouragement to take our engagement with The Senedd to the next level.
You can watch the full debate here Senedd debate 17.05.23 - YouTube
Helen Whately, Will Quince, Wes Streeting (who was also at the London meeting) and Peter Fox at The Senedd, all praised the role of brain tumour charities and as a charity we are in an elevated position of trust according to a survey ‘Charities are second only to family and friends as trusted sources of information for the public.’
We do not work in isolation though we need politicians on side with our campaigning messages and our funding ambitions and we need journalists too, not just for brain tumour stories but also to report more widely on issues like a lack of UK clinical trials as The Guardian did last weekend. (There will be more about UK clinical trials in next week’s update).
It almost goes without saying that researchers are vital too.
In this blog we spoke with Rebecca Rogers, a postdoctoral Research Fellow at our newest Centre of Excellence at The Institute of Cancer Research where the primary focus is paediatric high-grade gliomas (including DIPG). Diffuse intrinsic pontine glioma (DIPG) is an aggressive, high-grade brain tumour, most often occurring in children. More recently named diffuse midline glioma, DIPG has an extremely poor prognosis of eight to 12 months and is the leading cause of brain tumour deaths in children.
So, we take the opportunity to work with politicians and journalists and to support our researchers but most of all we need campaigners to raise awareness and make a difference.
You are already a brain tumour research campaigner because you are reading this blog but please forward it on to others, or put it on your Facebook page, and ask others to join you, and join us and add to our momentum and numbers – they can do just that by clicking here: Campaign With Us.
If you each recruit just one person this weekend, just one sign up to the campaigning database each, then that doubles our size and doubles the noise we make when we shout as one voice.
Please take every opportunity to support Brain Tumour Research.