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Brain tumours kill more children and adults under the age of 40 than any other cancer

A recess but we don’t stop

by Hugh Adams

As with last week the brain tumour questioning continued at Westminster this week but with Parliament in recess the questions were written rather than oral. 

The Chair of our All Party Parliamentary Group (APPGBT) Derek Thomas posed a follow-up question to the one he asked last week, this time asking the Secretary of State for Health and Social Care “what assessment he has made for the potential implications for his policies that OurBrainBank research estimated that whole genome sequencing analysis was carried out on approximately 1.6% of brain tumour patients and 1.3% of glioblastoma patients diagnosed since April 2021?” 

Former Foreign Secretary and Deputy Prime Minister Dominic Raab asked the Secretary of State for Health and Social Care, “how much funding his department (a) allocated to and (b) spent on research on brain tumours in each year since 2018?” 

APPGBT Officer Sarah Owen’s question was to ask the Secretary of State for Health and Social Care, “whether his department has made an assessment of the potential merits of bringing forward legislative proposals requiring that brain tumour tissue used for (a) biopsy and (b) analysis is frozen rather than stored in paraffin blocks?” 
Health Minister Will's reply was brevity itself: “No assessment has been made” was the response he submitted. 

Answers to the first two questions will be posted here when made public. A response to the third question is being thought through now. 

This week it has been confirmed that Will Quince will lead on cancer as part of his ministerial major diseases’ portfolio at Department for Health and Social Care. 

Last week, NHS England published its 2022 Cancer Patient Experience Survey (CPES) results. The Adult CPES has been carried out annually since 2010, generating data and insight into the experience of people with cancer in England.  

Out of 115,662 people who were sent a survey, 61,268 people responded, yielding a response rate of 53%.  

Patients gave an average overall rating of care of 8.88 out of 10 (very similar to last year’s rating of 8.91). The 2022 survey results demonstrate that overall, cancer patients receiving care and treatment in England continue to report positive experiences of their care across the cancer pathway. 

There are also increases in some key measures indicating the negative impacts the COVID-19 pandemic had on cancer patients’ experience have relented – especially the increases in respondents saying their family and friends were involved in conversations about diagnosis and decisions on treatment. 

77.7% of patients who had contacted their GP practice said they only spoke to a primary care professional once or twice before cancer diagnosis, as opposed to more numerous visits to the GP before diagnosis (77.0% in 2021). And 65.4% of patients who had contacted their GP practice said that the referral for diagnosis was explained in a way they could completely understand (an increase from 64.2% in 2021). 

78.3% of patients said that diagnostic test results were explained in a way the patient could completely understand (78.7% in 2021). 85.0% of patients said that they were told about their diagnosis in an appropriate place (an increase from 84.2% in 2021).  

Research, including data from the CPES, has shown that in general, people with pre-existing conditions have rated their experience lower than people without those conditions.  

Finally, a measure that is always important for us at Brain Tumour Research, 43.0% of patients said cancer research opportunities were discussed with them (a decrease from 44.1% in 2021). 

If you’re interested in finding out more about CPES, you can find all the results here.  

This week, at the Wales Cancer Alliance, we discussed the O’Shaughnessy report. In October 2022, the Association of the British Pharmaceutical Industry (ABPI), reported a 44% decline in the number of commercial clinical trials – trials funded by pharmaceutical or biotechnology companies – initiated in the UK between 2017 and 2021.  

As a result of this, in February 2023, the UK Government said it would conduct an independent review into the UK commercial clinical trials landscape to be led by Lord James O’Shaughnessy, which was published at the end of May. 

Our policy and campaigns team believe that O’Shaughnessy’s 27 recommendations provide a pathway to addressing the challenges the UK faces in this area.  

We will continue to hold the UK government to account for its commitments and will be asking it to adopt and implement these recommendations, ahead of the full response it has promised to publish in autumn.  

We also call on the Welsh Government to issue their response to Lord O’Shaughnessy’s report. 

There were a couple of pieces of news this week that we are aware of, and which you might be interested in. 

Firstly, an investigation by The Observer newspaper shows that the majority of NICE drug appraisals involve groups financially linked to maker of pharmaceuticals. The piece continued that “Drug companies are systematically funding grassroots patient groups that lobby the NHS medicines watchdog to approve the rollout of their drugs.” 

This isn’t the case for us.  

To start with the pipeline for new brain tumour drugs continues to look bleak.  

However we have always sought to work with and understand the pharma industry – we made sure there was an industry oral evidence session for the APPGBT inquiry.  

Industry providers of evidence for the APPGBT 

To not do so would be a disservice to our community so desperate for hope.  

However, we would always act with probity and very much agree with the comment provided by the Roy Castle Lung Cancer Foundation for The Observer when they said that “income from pharma” did not influence the charity’s involvement in NICE processes. “We retain an independent voice and our input is based on potential benefits of any new treatment” they continued. 
Last week the House of Commons debated a Standards Committee Report on All Party Parliamentary Groups (APPGs), and approved its findings, meaning there will be changes to how APPGs are run and operated. 

Some of the Committee’s proposals focus on APPGs which receive external financial benefits or benefits in kind over a certain threshold. The Committee proposes that the following additional rules apply to Groups who receive outside financial benefits totaling over £1,500 in a calendar year: 

  • These APPGs should produce an annual report at the end of the year outlining the work they have done. This is in line with a proposal from Mr Speaker and the Lord Speaker; 
  • The AGMs of such Groups should be chaired ‘externally’, by one of a pool of Members appointed by the Speaker—who would not be a member of the Group whose AGM they chair; 
  • The Committee propose that at least 8 Members of either House must be present for an AGM to be quorate (as opposed to 5 for APPGs with no registrable benefits);
  • The Committee proposes that the four officers should be held jointly and severally liable for compliance with the additional rules for these Groups. This is to create an incentive for APPG officers to ensure they actively oversee and contribute to the good governance of the Group where external financial benefits have been received. 

The Committee also proposes the following changes to apply to all informal APPGs, to enhance transparency and accountability (this list is not exhaustive): 

  • An outright ban on secretariats funded or provided by a foreign Government. 
  • There is currently no limit on the number of APPGs for which an MP could be an officer. The Committee proposes to cap this at six APPGs. This is to prevent Members from committing to several APPGs without the ability in practice to provide effective oversight and leadership. 

Providing the secretariat for the APPGBT is a really important part of our campaigning agenda and the time we spend on it could be seen to come with a financial cost or a benefit in kind.   

We are considering the impact that this will have on the APPG and are awaiting further guidance from the Office of the Registrar of All Party Parliamentary Groups, particularly on timelines for implementing the approved changes, and any transition period which may be put in place. 

It is clear the type of APPG the Standards Committee is looking to clamp down on and that most certainly isn’t the APPG on Brain Tumours (APPGBT). 

There are over 750 APPGs (and only 650 MPs) so the new membership changes could prove a challenge with regards to making sure we retain a good number of engaged MPs.  

However, we do have loyal officers, thanks to you our campaigners engaging your constituency MPs, so we don’t feel that the vital work of the APPGBT is under any future threat.  

We will make sure that it isn’t. 

Monitoring developments here as well as existing questions answered, will be something to occupy our Summer in the campaigning team at Brain Tumour Research.  

As will planning for the next Parliamentary year.  

We have such a lot to live up to as, if we review the last Parliamentary year from September 2022 to last week, then in the past ten months we have seen the announcement of a new Centre of Excellence, a question asked of the Prime Minister with a ministerial meeting promised, epic campaigning days in Scotland and Wales plus we had a brain tumour debate in the House of Commons and before that the Science Minister launched the APPG on Brain Tumours report.  

There has been so much going on and I hope that the (over) 1,2000 people receiving these updates plus those who read it on the website or access it via social media are convinced of the progress we are making.  

Remember in February 500 of you contacted your MPs ahead of March’s debate – an amazing mobilisation of brain tumour campaigners.  

It was this level of campaigning that led to Will Quince saying: 

“In truth, I think I have spent more time on this particular issue in my time as a Minister than I have on any other condition under the umbrella of the Major Conditions Strategy.” 

So, our summer break will be full of planning for our next manifesto and taking forward the APPGBT report recommendations and there won’t be the weekly updates on a Friday during August. They will return on Friday 8th September. 

Until then here are some blogs and images from the last Parliamentary year that you may like to revisit – or visit for the first time if you are one of our newer campaigners.  

The Pride of Scunthorpe 

Brain tumour debate in Scottish Parliament 

Brain Tumour Research meets with Health Minister 

A master's student at Kings College London is completing a dissertation thesis focusing on looking at the views of patient representatives of rare cancer on whether they are supportive of a right to try act being implemented in the UK. A right to try is an act currently implemented in the US that allows patients with rare diseases, who have run out of treatment options and cannot participate in clinical trials, to access and try experimental treatments which haven't been approved by the FDA. This act is controversial as it bypasses any regulatory or ethical approval. The thesis is specifically focusing on rare cancers and the right to try. One of the cancers being looked at is gliomas.  

This research on ‘a right to try’ has only been looked at from the perspective of oncologists previously and the aim here is to get the views of patient representatives using a questionnaire which you can access here:

In last week’s blog we wrote about the importance and impact of sharing stories.  

These two stories are totally devastating and completely underpin why we do what we do. 

     Ella McCreadie and  Niall Kavanagh 

These two awful stories have been linked this week by being reported on in the national media. 

It is the work of my colleagues in the PR team at Brain Tumour Research to take these stories from the traumatic deeply personal to clarion calls for national change using passion, tenacity and a long list of contacts. 

It is getting these stories in front of new people that has seen the #BrainTumourPetition sail past the 20,000-signatory landmark. 

Please keep the momentum going in whatever ways or means you have.  

Now, with so many more ways of communicating to so many more people, the only limit to reaching potential campaigners is our imagination and, such is the nature of modern communication, if we open the right door we could get 80,000 new signatures on the #BrainTumourPetition in one day  

The tools are there for all of us so please use them to campaign for Brain Tumour Research and support the #BrainTumourPetition.  

Working together we can reach the 100,000 target! 

Finally, this week we’d like to welcome a new Fundraising Group into the Brain Tumour Research family.  

Aaron’s Army has been set up to create a legacy for seven-year-old Aaron Wharton who passed away in April this year, three years to the day since he was first diagnosed with a brain tumour. 

Aaron’s Army’s first official fundraising event will be hosting the flagship Ellesmere (Shropshire) Walk of Hope along with the family of Ella McCreadie (see above) 

Aaron’s mum Nicola said: “I hope this, and future events will contribute one-day to life-saving research. That would be an incredible legacy for a little boy.” 

Aaron with mum Nicola and dad Lee 

To support Aaron’s Army with their fundraising please donate here

We didn’t mention our campaigning work in Wales earlier in this update, but it has seen significant progress this political year and in May the Welsh Government (The Senedd) held a short debate with the theme “Why Wales needs a strategic plan to prioritise brain tumour research” which was hosted by Peter Fox MS (Member of the Senedd).  

This debate was a direct result of the awareness event we held in Cardiff, which on that occasion was supported by Mike Hedges MS.   

Mr Fox’s opening statement was heavily inspired by the findings of the APPG on Brain Tumours Report ‘ Pathway to a Cure’ but clearly angled toward a Welsh political audience and we were very pleased to have had the opportunity to work closely with him on this and thank him for his kind words when saying “I would like to commend the charity for the sterling work it does, day in, day out, in raising vital awareness surrounding brain cancer.”  

It did contain his own experience too as his mother was lost to a brain tumour and as he said, “we know that the tumour robbed her of at least 10 years.”  

Mr Fox concluded that “the time for inaction is over. Our next actions could make a huge difference to those diagnosed and their families.”  

Other interventions and personal stories were shared by MSs Jack Sargeant MS who with huge poignancy and sadness made special mention of Aaron Wharton when he said of brain tumour research “this is an endeavour I fully support, and I hope that in Aaron’s memory, I hope the Welsh Government can support too.”  

Translating family tragedy into funds, awareness and political action. 

This is what we do together to support, and to change, and to bring hope. 

Wherever you are in the UK, thank you all for what you are doing as part of our Brain Tumour Research family. 

Thank you for reading to the end of this bumper update at the end of the Parliamentary year.

Wishing you all a peaceful time until the 8th September.