Our Campaigner in Chief steps down, a petition is launched and the APPG has an AGM

5 min read
 by Hugh Adams

Our founder and Chief Executive Sue Farrington Smith MBE has announced her retirement after undergoing treatment for cancer.

Sue led the coming together of a number of brain tumour charities to found Brain Tumour Research in 2009. Her passion for the cause comes from the loss of her beloved niece Alison Phelan in 2001, just before her eighth birthday, and the many families that she has met since then.

Sue, who underwent extensive surgery for low-grade abdominal cancer last year, said: “Although I have made a good recovery, I will continue to have scans and it is in the best interest of the charity and its future growth, and for the sake of my family, that I step down.

“I have always committed 100% of my energies to the success of the charity and our vision of finding a cure for all types of brain tumours but since my phased and now full-time return to work over the last few months, I have realised I no longer have the energy to be able to fulfil this role in the way that I would like and need to.”

She thanked the charity’s Trustees and employees plus its supporters across the UK for their dedication and loyalty which have played a crucial role in the charity’s exponential growth.

Sue, who described her time at Brain Tumour Research as “the most fulfilling years of my life”, will now take up a new role as a trustee of the charity bringing passion, continuity, lived experience and a broad skill set to complement the board.

Wendy Fulcher, our chair of Trustees, who lost her husband to a brain tumour, said: “Neither Sue nor I would have chosen to be part of the brain tumour community; our roles were unwelcomingly thrust upon us.

“However, in the 20 years that we have stood together fighting to improve options and outcomes for those diagnosed with a brain tumour and their families, Sue has been the staunchest of allies and the fiercest of campaigners.

“Her energy levels have been legendary and her leadership and management of the growth of Brain Tumour Research show just what passion and drive can achieve. I am proud of her legacy and her trailblazing work, which will be continued by the charity, but I am also proud to call her my friend and colleague. She is a one-off and the epitome of a brain tumour activist.”

There will be more reflections on Sue over the coming weeks as we come to terms with this news but having known Sue for nearly 13 years, I know that the first thing she would say to write about in this week’s campaigning update is our newly launched brain tumour petition.

We are calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.

Brain tumours kill more children and adults under the age of 40 than any other cancer yet the national investment in brain tumour research still represents just 1% of brain tumour funding since records began in 2002.

The Government should recognise brain tumour research as a critical priority, developing a strategic plan for adequately resourcing and funding discovery, translational and clinical research, ring-fencing £110 million of current and new funding to kick-start this initiative.

This should lead to an annual research investment of more than £35 million a year by 2028 from the Government and larger charities in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.

For too long governments have put brain tumours on the “too difficult to think about" pile. Five years after the Government announced £40 million for brain cancer research, just £15 million has been spent.

Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose. There needs to be a strategic plan using joined up thinking across the pathway of discovery, translational and clinical research.

We need to reach 100,000 signatures by Tuesday 31st October 2023 in the hope of prompting a parliamentary debate. Please sign the petition now and share it as widely as you can to help us reach our goal.

Sign the petition and help us make a difference.

At Tuesday’s AGM for the All-Party Parliamentary Group on Brain Tumours we were pleased to admit two new officers in Hilary Benn and Sarah Owen and, with sadness, we marked the loss of Baroness Masham who had been a Trustee for many years. We were delighted that Derek Thomas is to continue as our Chair and that Brain Tumour Research will continue to provide the secretariat. The meeting was also an opportunity to review what the APPG has been up to in the past year and that included:

  • Holding two oral evidence sessions for the brain tumour inquiry since last April; one with Industry representatives and one with charitable funders
  • Holding a meeting in November where we heard from Novocure about Tumour Treating Fields and The Brain Tumour Charity about their symptom awareness campaign
  • The inquiry report delivery and launch at Westminster
  • The Brain Tumour Debate on the 9th March
  • The APPGBT had media coverage in  The Guardian, The Express and  Sky News
  • During Brain Tumour Awareness Month Derek used PMQs as an opportunity to ask Rishi Sunak to make brain tumours a critical priority because “a unique complex disease needs a unique response”
  • APPG campaigners at 10 Downing Street as part of One Cancer Voice
  • Over 500 individual emails sent to MPs from brain tumour patients and their families ahead of the Westminster debate

Everyone associated with the APPGBT are determined to push forward this year with a campaigning agenda that is primarily focused on following up, and seeking to deliver on, the recommendations contained in the ‘Pathway to a Cure’ report.

On Tuesday the Scottish Parliament has held its first debate on brain tumours since 2017.

The Wear A Hat Day debate was introduced by Emma Harper MSP, inspired by her constituent Alan Johnstone who lost his wife Anneka to a brain tumour.

The debate saw cross-party contributions from seven MSPs, who spoke about the need for increased research funding and the importance of early diagnosis. Many also shared their constituents’ brain tumour stories, including Jackie Dunbar MSP who spoke about Brain Tumour Research supporter Suzanne Davies, who is nine years on from her diagnosis with a glioblastoma (GBM).

Paul Sweeney MSP Shadow Minister for Mental Health, emphasised that despite the prevalence and devastating impact of brain tumours, just 1% of the national investment in cancer research has been allocated to the disease. He highlighted the work Brain Tumour Research is doing to increase that investment to £35 million per year and commended the charity on “building capacity in pioneering research” through its Centre of Excellence strategy.

There were encouraging statements from Dr Sandhesh Gulhane MSP, who called on the Government to “get real about research”, urging for brain tumours and other less survivable cancers to be prioritised as a clinical priority, with a strategic plan to resource research. Whilst Beatrice Wishart MSP – who sponsored our Wear A Hat Day photocall at Holyrood during Brain Tumour Awareness Month – called on colleagues to join her and Jim Fairlie MSP in creating a cross-party group so the disease remains a top political priority. Beatrice’s motivation to support our cause is her daughter who has a brain tumour.

Jenny Minto MSP, described it as a “privilege” to respond on behalf of the Scottish Government in her first speech as Minister for Public Health and welcomed Brain Tumour Research supporters into the chamber. The Minister spoke about a 10-year cancer strategy to launch in spring this year, which will take a comprehensive approach to improving patient pathways, from prevention and diagnosis through to treatment and post-treatment care.

Watch a recording of the debate here.

There will be a brain tumour question raised by Lord Hunt in the House of Lords on Monday – it is the second question on the agenda following the session starting at 14:30 – and concerns “Improving the scale of research into the causes and treatment of brain tumours.”

To watch live tune into Parliament Live (don’t forget to select the Lords) from 14:30 – there is only a brief time allocated for this question before the Lords move onto other business but it is still a great piece of awareness raising and we are very grateful to Lord Hunt. This is the second time that Lord Hunt has brought brain tumours to the agenda at the Lords – you can find out about the mini debate he instigated at the beginning of 2021 here

There will be an update on the Lord’s question plus more news on our work in the devolved nations in next Friday’s update.

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