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Brain tumours kill more children and adults under the age of 40 than any other cancer

Questions, answers, Covid and the APPG Campaigning news update

by Hugh Adams

Well, with all the news and updates on the APPG over the past few weeks, it is high time I let you know about a couple of the written questions that have been tabled and replied to, over the past week or so.

Chi Onwurah MP for Newcastle upon Tyne Central asked the Secretary of State for Business, Energy and Industrial Strategy, what steps his department is taking to encourage research and clinical trials in non-Covid related research?

Amanda Solloway MP replied on behalf of the Secretary of State and part of her answer was, and the underlining is mine;

“The National Institute for Health Research (NIHR) baseline budget for 2020/21 is set at £1,090 million excluding Official Development Assistance funding. NIHR expects to spend its budget in full and a significant proportion of this spend will be on funding or supporting clinical trials funded by other research funders, However, the Government’s long-term objectives for R&D are clear: to invest in the science and research that will deliver economic growth and societal benefits across the UK for decades to come, and to build the foundations for the new industries of tomorrow.”

Spending its budget in full?

That is encouraging, as we seek to ensure the £40 million set aside for brain tumour research in 2018, of which so far just £6million has been allocated, is made available for the brain tumour scientists who hold the key to improvement in patient options and outcomes.

I was also drawn to the phrase “societal benefits” of R & D, and how that chimes with the APPG report of 2018 which said, “If brain tumours continue to be diagnosed late, with few treatment options and no sign of a cure, then the economic and social costs of brain tumours will always be unnecessarily burdensome.”

If you haven’t already, have a look at the report here

Although we have yet to receive a reply this time, thanks to the brain tumour campaigner, and a constituent of Chi’s, who invited her to Tuesday’s APPG.

Next Lee Anderson, MP for Ashfield, asked the Chancellor of the Exchequer, what recent discussions he has had with the Secretary of State for Business, Energy and Industrial Strategy on sectoral support for charity-funded medical research during the covid-19 outbreak?

On behalf of the Secretary of State Kemi Badenoch MP replied that;

“Medical research charities are an integral part of the United Kingdom’s world-leading life sciences sector and we welcome the interest of honourable members in this area. The government is monitoring the impact of Covid-19 on the work of medical research charities. To this effect, the Department for Business, Energy & Industrial Strategy and the Department of Health and Social Care is closely liaising with the Association of Medical Research Charities (AMRC), as well as individual charities, to understand the impact of the pandemic on this sector and identify how best the Government and charities can work together to ensure that patients continue benefiting from charity-funded research.”

Our position is represented by the AMRC of course but who are these “individual charities” and why aren’t we one of them? I will try and find out, possibly using questions from supportive Parliamentarians, written and oral questions being campaigning opportunities. For those of you who missed last week’s update, we looked at the different campaigning platforms available to us to get our voice heard.

Lee Anderson hasn’t been invited to the APPG by a campaigner/constituent because we don’t have one who lives in Ashfield. As you know we want to have a campaigner in every UK Parliamentary constituency, so any calls out to family, friends and social media connections would be both hugely appreciated and really vital as we grow and become more and more influential. Just ask those you know, who are potentially interested, to email and I can add them to our fast-growing list of those wanting to make a difference.

Talking about the AMRC this is their response to the National Cancer Research Institute's data showing that cancer charities predict a 46% drop in their research funding over the next year, the takeaway being: “By investing in charity-funded research, Government can help deliver a better future for countless patients across the UK.”

Cancer Research UK got involved in the debate about critical trails this week asking What’s happened to cancer clinical trials during the COVID-19 pandemic? These are difficult times as the media seem to be actively searching for stories of delayed treatments, late diagnosis and the traumatic impact of the pandemic whilst the NHS is very keen for charities to message out that, as far as possible, it is business as normal for cancer care. I have been ‘at’ a number of meetings this week, and I am sensing some push back to NHS messaging particularly from those in the so-called ‘front line’ cancer services.

I mentioned last week that it is high season for reports, surveys and predictions but when trying to get media coverage for these important documents, no matter how big you are, it is so difficult at this time to ‘sell in’ and get ‘cut through.’ (basically, get anyone to take any notice!).  Even items that look certain to be in tomorrow’s paper the evening before suddenly get dropped when a new Covid announcement is made and clearly this week the news agenda has been further crowded by the US election.  Talking of which, and without prejudice, click, scroll to the top and read this Twitter thread – you won’t regret it

I know I occasionally mention research in these pages. Last week it was fascinating stuff from Imperial, co-authored by researchers funded by us, and this week it is from our Plymouth research centre. Please visit our website over the weekend to read more although you can view the research abstract here – (you can also sign up to receive weekly research updates - email me so you don’t miss anything) – but I thought you be interested in this quote from Professor Hanemann about research in the time of Covid;

“ For brain tumour research being conducted at the University of Plymouth it is business as usual and with this being the third meningioma paper published since the pandemic struck and I am both pleased and proud of the work my team is undertaking and our partnership with Brain Tumour Research who I know are approaching the current situation with the same resilience as we are.”

Resilience, fortitude, and a sheer bloody-mindedness to make a difference, that is what binds us together as brain tumour campaigners.

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