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

All about the All-Party Parliamentary Group - Campaigning update

by Hugh Adams

The All-Party Parliamentary Group on Brain Tumours held its second virtual meeting on Tuesday.

The first thing that had to happen was that we were quorate, meaning that we had at least five Parliamentarians in attendance and could conduct our business, and that happened!

So, a huge thanks to all of our campaigners for the ‘save the date’ emails and invites they sent out.

We were delighted to be joined by Ruth Cadbury MP, Hillary Benn MP, Ben Lake MP, Lord Randall, John McDonnell MP, James Newcome ( Bishop of Carlisle), Seema Malhotra MP, Sir Charles Walker MP, Sir Jeffrey Donaldson MP, Greg Smith MP, Baroness Masham, with representatives attending from the offices of Jane Hunt, Caroline Ansell and Siobhan Baillie plus apologies being received from Paul Bristow MP, Jayne Hunt MP, Peter Aldous MP, Stephen Timms MP, Rushanara Ali MP, Lord Carlile, Elliott Coburn MP, David Simmonds MP, Lord O’Shaughnessy, Jim Shannon MP and  Chris Bryant MP.

This is a fantastic level of political engagement, and we will endeavour to take forward our relationship with every one of these politicians.

Well done all of our campaigners – this engagement has happened because you have taken the time and trouble to contact your MPs and have demonstrated your passion as brain tumour campaigners!

So, what did we talk about? – well the meeting’s minutes will be on our website here very soon, we are just making sure that everyone is happy with them before we upload them, so do keep checking in to see the full lowdown.

I have attached to this email the briefing for Parliamentarians that we put together ahead of the meeting - I hope you find that interesting reading.

As you will see the agenda ranged from better accessing the NIHR £40million, to UK clinical trials, from the DVLA to a Brain Tumour Patient Charter of Rights.

We will be picking up the threads of these discussions to move the agenda forward and we are particularly excited by working with Consultant Neuropathologist, Dr Kathreena Kurian, and the APPG on a new pathway for effective and successful applications by brain tumour scientists, in a drive to get more of the £40 million allocated for its original purpose. For the background to this money being allocated in 2018 please click here - more funding for research into brain tumours is urgently needed.

We will also be focusing on this pathway in a briefing document we are putting together for members of the House of Lords ahead of a question being asked by Lord O’Shaughnessy on Thursday next week.

Details are here; scroll down to Thursday 19th November - *Lord O’Shaughnessy to ask Her Majesty's Government what financial support they are providing for research into therapies and treatments for people with brain tumours.*

It is a testament to the seriousness members of both houses view brain tumour matters that they are keen to receive up to date information, statistics and campaigning asks from us to get a holistic view of the issues that are concerning our community. Please do keep letting me know what you’d like to be addressed and who you think I could address it to.

It’s a slightly shorter update this week – it has been a long, busy week and there is a lot to write up, and there are next steps to plan, but I am feeling optimistic and I hope some of that comes through.

In these updates during the pandemic I have written about the Government’s financial rescue package for charities and the focus being on, very worthy, charities providing frontline services, and the danger of research funding charities, such as Brain Tumour Research, being forgotten when we need support as much as we have ever done.

Providing hope is a frontline service and I am always motivated by what our activist Peter, father of Stephen, Realf said;

“Research gave my son hope, the campaigning we have done since Stephen died and the impact, we have had has given me the belief that my son did not die in vain but the bold words and optimism of 2018 need to be matched by actions and those making announcements must know they will be held to account. When my son was diagnosed in 2008 his oncologist said: “who knows what we will know about brain tumours in 10 years’ time” (2018). This gave Stephen hope, research gave him hope, he hoped things would change, improve and save him. They didn’t but my hope for other families lives on through research. My fear is that in five years’ time there may not be the opportunity for the NIHR to luxuriate and reject 85% of funding applications as not of sufficient quality – they won’t have any applications; the bright young minds will be long gone.”

So, I will keep sending out campaigning updates and research news, because we want to provide hope, and we want to work together, and we want to make a difference – just as you do.

Research is hope – to strive for better research funding is a campaign.

Thank you for campaigning with us and if you would like to find out more and join us email me or visit Campaign with us.

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