Look back - Look forward

5 min read

Saturday will mark the end of my thirteenth year at Brain Tumour Research (Maddie from the digital marketing team has just told me that thirteen years ago she was seven!) and I will be spending it at Wardown Park in Luton supporting our Luton Walk of Hope. 

With ‘Year Fourteen’ beginning on Sunday, I’m continuing a tradition started in 2020 that I mark this anniversary with a campaigning review of the past year – and what a year it has been!  

The highlight must be the publication of the All-Party Parliamentary Group on Brain Tumours (APPGBT) report – ‘Pathway to a Cure – Breaking Down The Barriers’.  The recommendations from this report will inform our campaigning agenda for the coming weeks, months and years.

We are holding regular meetings with invested stakeholders which, even though they aren’t reported on in these updates, are driving the agenda forward and seeking to turn recommendations into reality.

Just days after the launch of the report, and during Brain Tumour Awareness Month, came the Brain Tumour Debate. I am still humbled that over 500 of you emailed your MPs requesting that they attend the debate. As I explained at the time the debate was held on a Thursday afternoon – a time when many MPs are heading back to their constituencies, when others are undertaking field trips based on their responsibilities to Select Committees and many other meetings are taking place. We only had the date confirmed a week before the actual day and MPs' diaries can be booked up for months ahead. 

We were advised that to get an attendance at our debate of 10 MPs would be a success and that 15 would be the absolute top number to hope for. Clearly, we aimed for as many as we possibly could and in the end, including the minister 15 MPs actually made oral contributions to the debate. What we did to support and populate a lively, emotional and important debate speaks volumes of what we can do when we work together. 

In further Westminster focused action during the past year there have been PMQs, ministerial meetings, and a new Government department with a senior role for a great advocate for Brain Tumour Research George Freeman. Also, and memorably Health Minister Will Quince stated in June that “In truth, I think I have spent more time on this particular issue ( brain tumours) in my time as a Minister than I have on any other condition under the umbrella of the Major Conditions Strategy.”   

In the past year under the stewardship of my colleague Thomas our work in the devolved nations has gone from strength and we are both proud of, and ambitious for, our work in Scotland and Wales - not forgetting Northern Ireland of course. 

There has been the return of lab tours plus the game changing opening of our latest research centre 


There were many memorable speaking engagements this year including at the launch of our new Centre, at the retirement for our co-founder and trustee Sue Farrington Smith and also in Vienna at the 5th Biennial World Summit of Brain Tumour Patient Advocates.   

Hugh in Vienna 

In Vienna there were nearly 100 attendees from 30 countries and Brain Tumour Research having attended all four previous summits was proud to be asked to present at the summit and to share some best practice and experience on community engagement and campaigning. 

Just last week the Engineering and Physical Sciences Research Council (EPSRC) Interdisciplinary Research Collaboration (IRC) in Targeted Delivery for Hard-to-Treat Cancers which aims to develop new technologies to effectively deliver drugs for the treatment of three hard-to-treat cancers including glioblastoma asked me to present at the University of Cambridge.  

The subject of course being political engagement. 

It has been another year of amazing personal support whether it was from Rob Delaney, who sent “love and thanks to everyone supporting Brain Tumour Research” or in the form of a £1 million donation with Mary Scott hoping that “with this legacy, Mike’s (her husband) death won’t have been in vain, that his name will live on and that the money will go some way towards finding a cure.” 

As most of you will already know, with Sue stepping down, we have announced  a new Chief Executive, Dan Knowles. 


As Dan comes to the end of his first fortnight at the helm of Brain Tumour Research I met with him to talk about our campaigning and he told me: 

“I am absolutely clear on the need for Brain Tumour Research to remain at the forefront of the campaign to improve funding for vital research into this devastating disease.  

“Through our hard work and endeavour particularly alongside our role as providers of the Secretariat for the APPG we have become the voice of the brain tumour community.  

“That will continue.  

“It is impossible to separate the role of a research funding charity from the political world and I would not want to.  

“We cannot get to where we need to get to on our own.  

“The Government of the day needs to step up too and warm words need to be backed up with actions to make a difference.  

“I am thrilled to be able to lead the charity into a new era of activism and will be keeping a close eye on what the policy team are driving forward.  

“I know they are reliant on our campaigning database, to support them by contacting their MPs and taking positive action such as signing our petition.  

“I look forward to meeting our campaigners at future events and wish to assure them that our campaigning work is an area I see as core to the Brain Tumour Research that I have inherited and will be taking forward over the coming months and years.”  


Our campaigning work this week will have a Manchester focus and if you are at the Conservative Party Conference, please do pop over to see Thomas at the Health Charity Showcase (details above)  We are proud to be standing alongside so many other charities and hope to get a visit from Steve Barclay the Secretary of State for Health. Thomas will be sending back his report from Manchester for next week’s update. 

Memorably this year one campaigner’s story took her to the very top of the political tree when, with her MP, she went to Downing Street and met with the Prime Minister.  

Nicki Hopkins embodies everything about being a brain tumour campaigner and activist, courage, resilience in the face of awful, unexpected loss.  

They are very proud of her in Scunthorpe and we are very proud of her too.  

Thank you to all of the ‘Nicki’s’ out there – you are why we do what we do and we certainly couldn’t do it without you. 


Nicki Hopkins in the middle with her MP Holly Mumby Croft and PM, Rishi Sunak 

The loss of David, Nicki’s husband has driven her on with her fundraising and campaigning and there are three other fundraisers and campaigners that I won’t forget this year - Laura Nuttall, Liam Bergin and Aaron Wharton 

Our community followed you all so closely and we were inspired by you and now, like too many others this year you have left us.  

We won’t forget you. 

I’m entering year fourteen with optimism for political change, for greater research investment with new initiatives plus innovative treatments on the horizon - but it can’t come quickly enough. 

It has been the honour and the challenge of my professional life to be a part of this community – my longevity has been unexpected. It has bought rewards and disappointments, but the focus has always been on patients and their families – this is at the core of the charity, and we are bigger than any individual however long they have been in post. As we move to a new era, long termers may take time to reflect occasionally but the drive and the energy is directed on the future and where we are going not where we have been. 

Thank you for being part of the journey 


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