Last week I introduced you to our Research, Policy and Innovation team and this week I thought I’d share a little bit about what each of us have been up to.
For me, this week (and without doubt the next few weeks) can be summed up with two words – ‘The Report.’
Concerned about the lack of progress in improving options and outcomes for brain tumour patients and their families, the All-Party Parliamentary Group on Brain Tumours (APPGBT) launched the ‘Pathway to a Cure – breaking down the barriers’ inquiry in 2021. During 2022 the APPGBT held six oral evidence sessions and received survey responses from 38 leading brain tumour scientists and clinicians across the UK representing 26 organisations. Representations were also taken from the pharmaceutical industry, charitable funders and convening bodies. As many of you will know, because you submitted your own evidence, the inquiry undertook a patient survey too.
I have written about this many times over the past twelve months, Brain Tumour Research provide the secretariat for the APPGBT, and the upshot of all the written and oral evidence that has been read, heard and collated is ‘The Report’.
The report launch will be on Tuesday 28th February where the recommendations reached by the panel will be made public. Yesterday we had a meeting with our Chair Derek Thomas MP to hone down these recommendations and in a couple of weeks the whole inquiry panel will meet to agree the final contents.
This week Nicola, our Research Communications Officer, has been doing a deep dive into the official data regarding sector spend on brain tumour research, to substantiate and reference claims made during APPGBT evidence sessions. This is to safeguard the validity of the conclusions and outcomes of ‘The Report’.
Our Director of Research, Policy and Innovation Karen has, this week, crossed the country to attend meetings designed to explore and propose novel, exciting, high risk brain tumour research proposals. She was also pivotal to this week’s meeting of our research sub-committee which is a regular meeting with members of our board of trustees to explain, explore and develop our research strategy, policy and achievements. To understand the culture that underpins our charity it is worth taking an opportunity to find out more about our trustees
Thomas, our Policy and Public Affairs Officer, has been keeping an eye on what is going on in the devolved nations, and we will have news of exciting events planned for Brain Tumour Awareness Month to come in future campaigning updates. This week, the Wales Cancer Patient Experience Survey (WCPES) published their most recent findings. They show that 92% of people with cancer in Wales treated during the pandemic have rated their overall care highly.
The survey, which was funded by Macmillan Cancer Support and the Wales Cancer Network, asked people about many aspects of their cancer care from their diagnosis to the care they had when their treatment ended. More than 6,000 people in Wales took part in the survey. The results will be used to understand what’s working well and where improvements are needed.
92% of people surveyed rated their cancer care during the first year of the pandemic as 7 or above out of 10 – with 45% rating their care as very good or 10 out of 10. Many people with cancer also praised being treated with dignity and respect when in hospital (90%), privacy during examinations and treatment (94%) and having trust and confidence in the healthcare professionals treating them (84%).
The survey also showed areas for improvement. Over a third of people (36%) said they were not offered information about how to access financial help or benefits, which every person treated for cancer in Wales should be offered due to the financial impact a cancer diagnosis can have. More than two thirds (70%) said they had not been offered a written care plan, which should be routinely offered to every person with cancer in Wales.
You can read more about this survey here.
Brain Tumour Research is a proud member of Cancer 52 and are pleased to have a seat on their Policy and Public Affairs Steering Group (who are meeting next week – details of the meeting with be in next Friday’s update). If you’re a proven leader with an understanding and passion for the needs of people with rare and less common cancers Cancer 52 would love to hear from you as they seek to recruit a new Chair of the Board.
As well as this campaigning update there are other ways we communicate with different segments of our database. The widest weekly communication we do is via our e-news which this week focuses on campaigning and asks people to campaign with us.
I’m quoted in the e-news as follows: “The political world is fast moving and constantly changing. However, one thing that doesn’t change is our call for greater brain tumour research funding. With a general election likely within the next 18 months there will soon be new MPs at Westminster and new ministers in key positions.
“We will continue to lobby, campaign and influence key political stakeholders no matter their political persuasion or where they take their seat, so they are fully aware of the brain tumour cause. Please join us to make a difference for brain tumour patients and their families.”
Other areas that these e-news focus on are fundraising and research – why not subscribe to our e-news too?
One piece of news that slipped through over the holiday period without me letting you all know was that a scientist from our Brain Tumour Research Centre of Excellence at the University of Plymouth has been recognised with an award for his research into brain tumours.
Dr Liyam Laraba, who completed his PhD through a Brain Tumour Research Studentship, has been awarded first prize at the 2nd Annual Neurofibromatosis Young Investigators Forum (NFYIF), in Houston, USA.
Liyam is a Research Fellow at our Plymouth Centre and is a part of Professor David Parkinson’s team investigating neurofibromatosis-related tumours. Liyam authored the recent paper on promising new non-surgical treatment for NF2 patients who have developed schwannoma (acoustic neuroma) tumours, potentially providing patients with an alternative treatment to surgery and radiotherapy to manage their condition.
Liyam presented his work on treatments for NF2-related tumours at the annual conference for early-career basic scientists and clinicians in the field of neurofibromatosis research. He was awarded first prize in the Distinguished Young Investigator Research Award, Clinician/Research Scientist category. This excellent recognition of the quality of his research comes with a $5,000 research grant.
He said: “The NFYIF in Houston was an amazing opportunity to network and share research ideas with like-minded early-career researchers in the field of neurofibromatosis brain tumours. I was especially pleased to win a prize which will further fund my research efforts within the Brain Tumour Research Centre of Excellence at the University of Plymouth”.
Leading cancer charities Young Lives vs Cancer, the Children’s Cancer and Leukaemia Group (CCLG), the Ellen MacArthur Cancer Trust and Teenage Cancer Trust are working in partnership to undertake research which will investigate the psychosocial needs of young cancer patients. The research will examine how the current system supports young people, as well as identify gaps which need to be addressed in order to build a better future for children and young people diagnosed with cancer.
As a part of the Children and Young People Cancer Coalition, Brain Tumour Research welcomes the partnership and will be supporting the upcoming research.
Dartington Service Design Lab has been commissioned to undertake the research, which will be experience-led and co-designed by young people, parents of children with cancer and key stakeholders, with Edge Hill University.
Professor Tim Hobbs, Chief Executive at Dartington Service Design Lab said: "This approach brings together the voices of children, young people and families, new evidence and systems thinking, which will help inform plans about the best roles each organisation can play in the sector- alone and together – to help improve outcomes for those they serve.”
The aim of the research is to improve policies and practice around cancer support for the whole cancer journey – from diagnosis, treatment and beyond. The research will be taking place throughout the first half of 2023 with initial findings expected in the autumn.
Further communications on how to get involved with the research will follow in the spring on the Brain Tumour Research website and our social media platforms, as well as at Young Lives Vs Cancer.
That’s it for this week – time to get back to working on ‘The Report’
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