Brain tumours kill more children and adults under the age of 40 than any other cancer
Local radio, the paediatric experience and lack of clinical trials
To begin this week, we’d like to send out huge thanks to those of you who have contacted your MPs requesting them to join the APPG on Brain Tumours taking place at Westminster on Wednesday 23rd November at 16:00. We make no apologies for reproducing the template invite below and request those of you who haven’t already done so email your MPs and let’s ensure we have a roomful of Parliamentarians to hear news of a new treatment option, a symptom awareness campaign and an inquiry update.
Please could you all send the following (or a personalised version of the following) as a ‘Save the Date’ email to your MPs this weekend? Remember to Cc me (email@example.com).
Subject; - APPG on brain tumours 23rd November 16:00 – 17:00 Room W1 Westminster Hall
Dear <Your MP’s name>
The APPG on brain tumours will be taking place in Room W1, Westminster Hall on Wednesday 23rd November from 16:00 – 17:00 and will be chaired by Derek Thomas MP. An agenda and a briefing document from the charity Brain Tumour Research who provide the APPG’s secretariat will be forthcoming in due course and Hugh from the charity is Cc’d. As your constituent, and as someone who is passionate about improving options and outcomes for brain tumour patients I am asking if you could please make space in your diary and join that meeting.
It would be hugely appreciated.
<Your postal address and postcode>
One MP who is keen to get involved is James Daly (Bury North) who we met at Westminster this week. In his short life, James’ constituent, Matthew Pullan campaigned passionately to raise awareness of brain tumours and of how a cancer diagnosis impacted the life of a teenager. Our conversation with James involved how the Government must end health inequalities for young people, particularly those relating to young people with cancer. We would like to see an improvement in the experience of young people with cancer from diagnosis, through treatment and beyond. James wants to get more involved with the APPG on Brain Tumours and has already said he’ll get his office to participate in Wear a Christmas Hat Day on Friday 16th December.
With the announcement that BBC local radio faces significant cuts to programming we asked our PR Manager Lizzie Massey, one of a number of former BBC staff employed by Brain Tumour Research, to reflect on the impact BBC local radio has had on our charity. She said: “We have always proactively shared the stories of our brain tumour community on BBC radio and have had great success in promoting campaigning endeavours, fundraising exploits and the human stories behind bleak brain tumour statistics.
There is no doubt having these stories aired has increased money raised and helped us grow as a charity and we would like to thank all the presenters, producers and journalists who have worked with us to achieve this.
Going forward in these uncertain times, I am sure these opportunities for engagement will continue, albeit with a stronger focus on online news.
This will bring new challenges, but also new opportunities which we intend to embrace.
Sharing, educating, and informing a BBC audience about Brain Tumour Research will continue to be of paramount importance to our team.
We’d like to thank everyone who has worked with our PR team over the years, without you we wouldn’t have these important stories to share.”
Just this week we have had the opportunity to raise awareness on BBC Three Counties, BBC Merseyside and BBC West Midlands.
The top 10 priorities for childhood cancer research have been revealed. This is really worth reading and is a list of the top 10 research priorities for children’s cancer which has been published, following a collaborative project which gathered the views of patients, families, professionals and survivors to identify gaps in research and ‘unanswered questions.’ At Brain Tumour Research we hear heart-breaking stories of paediatric loss caused as much by the treatment as the tumour and of the long-term deficits that follow clinical interventions too. Quality of life and long-term survival must be the goal and it is well-funded brain tumour research that holds the key.
On a similar theme, the NHS Cancer Programme is looking to interview children and their parents or carers for the Under 16 Cancer Patient Experience Survey, which is used to understand and improve the quality of cancer and tumour care in England. They need help from children and their parents/carers to test the survey to make sure the questions are clear and easy to complete.
They are looking to speak to children and young people aged 8-16 and their parents or carers who have received NHS cancer or tumour treatment or care in England in the last 12 months. The interview will include both the child and the parent or carer. They are also looking for parents or carers of children aged under 8 years old who have also received cancer or tumour care in the last 12 months.
The interviews are an hour long and are conducted over Microsoft Teams or over the phone. There is a £60 voucher for all those that take part in the interview.
More information about the research project can be found here.
Ahead of the Government’s delayed autumn statement, Brain Tumour Research has joined a number of charities in signing an open letter to the Chancellor of the Exchequer.
The letter highlights some of the challenges for those living with neurological conditions in relation to the cost-of-living crisis.
Brain Tumour Research published a report in 2018 which looked at the financial impact of a brain tumour diagnosis. We found that for some people the diagnosis of a brain tumour “was not really the worst thing” – it was the loss of independence through losing their driving licence possibly resulting in the inability to work and then the financial consequences. Currently those unable to work because of their neurological condition are seeing real term cuts to their income, as benefits are expected to fall at least 6% behind inflation this year.
Recommendations in the letter include increasing levels of Disability Cost of Living Payments and extending the Warm Homes Discount to ensure those living with neurological conditions do not face fuel poverty. It urges the Chancellor “to provide additional support for the one in six of us living with a neurological condition as part of the Fiscal Plan”.
The annual Scottish Cancer Network Stakeholder event took place in Dunblane this week.
The conference, which we attended, focused on the role of cancer networks, how to improve access and recruitment to clinical trials, and the future direction of cancer services in Scotland.
In the opening address, Cabinet Secretary for Health and Social Care Humza Yousaf MSP pledged to make Scotland “one of the best in the world” when it comes to cancer care and treatment.
One meeting we attended was a productive discussion on improving clinical trials access, led by National Clinical Director Dermot Murphy, and this resulted in many good ideas which will all be relayed to Scottish elected representatives. These ideas included ensuring there is buy-in of all the Multi-Disciplinary Teams for clinical trials and to ensure that a trial culture is fostered.
This discussion was timely as a recently released report by the Association of the British Pharmaceutical Industry (ABPI) has shed light on the current climate of UK industry clinical trials. The report, Rescuing Patient Access to Industry Clinical Trials in the UK, shows that not only did the number of industry clinical trials initiated in the UK fall by 41% between 2017 and 2021, but the number of Phase III industry trials (medicines closest to market) also fell by 48% in the same timeframe.
In 2021/22, the total number of patients with access to industry clinical trials on the National Institute for Health and Care Research Clinical Research Network (NIHR CRN) was 28,193. This was significantly down from 50,112 in 2017/18.
Those affected by rare diseases, such as brain tumour patients, have limited treatment options in routine care and, as such, are disproportionately affected by reduced accessibility to treatments through clinical research. The five-year survival rate for brain tumour patients is only 12.5%, the poorest of all cancers except pancreatic, and so the need for new treatment options is very clear.
This news is troubling for anyone interested in improving the options and outcomes for anyone affected by a brain tumour. If we fund early-stage science but then cannot get discoveries through to clinical trials then we are failing patients. Similarly, if we prioritise funding for trials to the exclusion of early-stage science, we will reach a point where we have no trials to fund.
The Royal College of Physicians (RCP) and the National Institute for Health and Care Research (NIHR) issued a joint position statement on ‘ Making research everybody’s business’ this week.
The statement sets out how to make clinical research a part of everyday practice for all healthcare professionals in order to not only improve outcomes for patients, but to improve effectiveness and efficiency of care.
The RCP and NIHR position statement is a promising step forwards for brain tumour patients for whom standard treatment options have remained unchanged for more than 20 years, and survival rates continue to be extremely low.
While the UK’s COVID-19 response highlighted the vital role clinical research can play in the development of vaccines and treatments, it negatively impacted research into other conditions, including brain tumours, with more than 40% of NHS trusts pausing non-COVID-19 research studies during the first wave of the pandemic.
Recovering clinical research activity is essential for UK healthcare and will require a collective response from across the health and care system. This joint statement recognises the vital role played by clinicians in the research landscape and we applaud and support it.
It must be viewed alongside the lab-based research undertaken at the discovery end of the translational pipeline which has also been affected by recent events.
Looking at the ABPI report and the NCP/NIHR statement Brain Tumour Research’s position is, and remains, that the complete translational pipeline from scientist’s bench to patient’s bedside needs appropriate funding and we are clear that this needs joint enterprise by charities and by Government.
Tomorrow (Saturday marks the end of International Brain Tumour Awareness Week which is championed by our great friends at the International Brain Tumour Alliance (IBTA). We salute the invaluable worldwide advocacy they do and their remarkable leadership team with Kathy Oliver at the helm.
Worldwide or Westminster, local radio or individual trial sites, the work continues, the passion is undimmed, the prize is too great for us to falter. Whatever your personal reason for being a brain tumour research campaigner you are not alone.