A roomful of hope

5 min read

This is what hope looks like!

Taken at this week's Brain Tumour Research workshop this photo is, in one room, the focus of our research funding - the brightest minds working to unlock the uniquely complex puzzle that brain tumours pose.

Tom and Sara were just two of the researchers at the workshop sharing their knowledge, collaborating - building a network. Presentations were given on funding from Life Arc, advancing treatments for brain cancer at the tempo achieved in 2020 en route to the COVID-19 vaccine and opportunities presented by Experimental Cancer Medicine Centres (ECMC).

The overarching workshop title was 'Translation - delivering impact for patients' and from a campaigning perspective Thomas and I made sure that in the same way that researchers need scientific evidence to produce papers and posters that, from a campaigning perspective, we need evidence from scientists on barriers to funding and barriers to progress. 

Read our blog from the workshop written by my colleague Alexa, our Communications Manager, here.

Armed with 'scientific' evidence we can present back to the APPGBT, we can further lobby ministers and we can drive our points forward with funding bodies. On Tuesday at Westminster we look forward to taking another step with our campaigning. We expect new Parliamentarians to engage with the APPGBT and they are doing this because you, our campaigners, have contacted them and asked them to attend. As we always say people cannot support a cause unless they know it exists. Thank you for all of the support with this meeting and others in the past and in the future.

This week the new Parliamentary session opened with the The King’s Speech. The speech briefly mentioned health and social care, outlining how the Government will deliver its plan to cut waiting lists and transform the long-term workforce of the NHS, by delivering on the NHS Workforce Plan. This plan will increase the number of trained doctors and nurses and ensure minimum service levels to prevent strikes from undermining patient safety.

Brain Tumour Research was hoping that there would be announcements on the UK’s approach to the establishment and regulation of clinical trials - this wasn't forthcoming. This legislation is needed in order to boost patient involvement and to ensure the highest levels of safety whilst enabling greater regulatory pragmatism. We believe that although the UK is strongly positioned – with a diverse population, a vibrant life sciences sector and excellent academics - there a number of challenges which continue to hamper UK clinical trial activity to the detriment of patients and medical professionals.

The speech also committed to Prime Minister Rishi Sunak’s previously announced pledge to create a ‘smoke-free generation’, describing how the Government will introduce legislation to restrict the sale of tobacco, so that children aged fourteen or younger can no longer be sold tobacco, as well as restricting the sale and marketing of e-cigarettes.

Our colleagues at Cancer Research UK welcomed the Tobacco and Vapes Bill, following their #SmokefreeUK campaign. Michelle Mitchell OBE Cancer Research UK CEO said: "We estimate that there are around 885,000 16–24-year-olds smoking in the UK today. The recently announced funding can help those smoking to quit, but this proposed legislation could stop the next generation ever becoming addicted to tobacco."

The Cross-Party Group on Medical Research this week launched its report entitled: How Medical Research Benefits the People of Wales.

The aim of the inquiry was to understand why medical research is so important to Wales and the benefits it can have across society, our health service, and our economy.

The report concluded that participation in clinical trials improves patient experience and outcomes, and that research-active hospitals provide the best possible care. Medical research also helps to address NHS staff shortages, with improved retention and recruitment, whilst giving a massive boost to the Welsh Economy.

Russell George MS, Chair of the CPG on Medical Research, said: “If we as a nation are to access all the benefits of medical research, Wales needs proper investment in medical research, equitable patient access to clinical trials, and an NHS with an embedded culture of research.” Mike Hedges MS added: “Investing in research and life sciences makes perfect sense as it creates long-term, well-paid jobs.”

Responding to the report, Kieran Walshe Director of Health and Care Research Wales said: “The experience of the pandemic has made people realise that science done well and done quickly can make a real difference to people’s lives. We also recognise the need to make it easier to get research done.”

Thomas' opinion is that: “This is an excellent report by the Senedd Cross-Party Group. It identifies many of the themes mentioned in the All-Party Parliamentary Group on Brain Tumours (APPGBT) Report, Pathway to a Cure – breaking down the barriers, in particular - creating a sustainable research environment, whilst attracting and retaining the most talented researchers.”

 Returning to the meeting of the APPGBT on Tuesday, our agenda will include:

  • A holistic overview of the diagnosis, investigation and treatment of patients with brain tumours delivered by Consultant Neurosurgeon Peter Whitfield
  • Vorasidenib - a family story about this new therapeutic which is showing early promise but isn't currently likely to have UK availability
  • Siobhain McDonagh MP (pictured above) will talk about her campaigning activities to improve outcomes
  • There will be an update from the Tessa Jowell Brain Cancer Mission from Dr Nicky Huskens

Following a  change to the mandatory structure of all APPGs there will also be an opportunity for us to update on new members of the APPGBT - we have more than 20. This new and necessary criteria has been achieved by you getting in touch with your MPs and asking them to declare themselves active supporters of the APPGBT.

We simply could not do what we do, or have the impact that we have, without you.


On Tuesday, as our workshop was in full swing, Baroness Randerson tabled a question for the Department of Health and Social Care which asked: "His Majesty's Government, further to the All-Party Parliamentary Group on Brain Tumours report Brain Tumours: Pathway to a Cure — breaking down the barriers, published on 28 February, whether they have accepted recommendation six contained in that report that specific funding should be ring-fenced for research into childhood brain tumours; and if so, what is the timescale for implementation."

This is a question that the attendees of the researcher workshop, particularly at our ICR centre where paediatric glioma is the focus, will be very keen to hear the answer to.

That's it from this week's update.

Next week we will be back with news from the meeting of the APPGBT.

Hugh and Thomas

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