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

George Freeman, the APPGBT and this week’s meetings

by Hugh Adams

As part of the reshuffling of the cabinet it was announced on Wednesday evening that George Freeman MP for Mid Norfolk is returning to the Department for Business, Energy and Industrial Strategy (BEIS) as Minister for Science, Technology & Innovation. At Brain Tumour Research we very much welcome this reappointment. Back in April 2016, following a Westminster Hall debate on brain tumour research triggered by our government e-petition, George convened a Task and Finish working group in the Department of Health to look into the matter in greater depth. The resultant report was significantly influential in the 2018 announcement of ring fencing of £40 million in funding to be invested through the National Institute for Health and Care Research (NIHR) over the next five years. George was disappointed when we updated him this summer on the allocation of this money and resolved to see what he could do to improve the situation. He has made clear that he aims to put the UK at the forefront of the brain tumour fight. We look forward to supporting him in that ambition.

In July the Association of the British Pharmaceutical Industry set out why making the UK the leading hub for life sciences must be an urgent priority for the Government.

It is a position that is hard to argue against and brain tumour research can become an example of best practice and success in this area – we have to keep campaigning and not let our cause be forgotten.

One way as brain tumour campaigners to do this is through the All-Party Parliamentary Group on Brain Tumours which will be meeting at Portcullis House in Westminster at 16:00 on Wednesday 23rd November.

The agenda is scheduled to include presentations from The Brain Tumour Charity on their symptom awareness campaign, a presentation from Novocure about Tumour Treating Fields and an update from Brain Tumour Research on the APPGBT inquiry – ‘Pathway to a Cure – breaking down the barriers’

It is vital that as many MPs as possible attend this meeting and so for many of you who are  new to our campaigning group this is your first opportunity to engage with your MP. Here is what to do:

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 (hugh@braintumourresearch.org).  

Subject; - APPG on brain tumours 23rd November 16:00 – 17:00

Dear <Your MP’s name>

The APPG on brain tumours will be taking place at Westminster on Wednesday 23rd November from 16:00 – 17:00 and will be chaired by Derek Thomas MP. An invite, agenda, precise location details 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 Name>

<Your postal address and postcode>

If you don’t already have it - you can find your MP’s name and address here:

https://members.parliament.uk/members/Commons

Don’t worry if you don’t get a reply straightaway, there will be more opportunities to lobby your MP in the coming weeks. Please forward any replies to me hugh@braintumourresearch.org

For those of you who are new to campaigning, you may be interested to know that the All-Party Parliamentary Group on Brain Tumours (APPGBT) was established in 2005 to raise awareness of the issues facing the brain tumour community in order to improve research, diagnosis, information, support, treatment and care outcomes. Since 2005, MPs and Peers from across the political spectrum have worked together in supporting the brain tumour community, researchers, clinicians and most importantly, patients and their families. The APPGBT came into being after a group of founding charities of Brain Tumour Research had worked tirelessly to raise the need for more research into brain tumours up the political agenda. APPGBT members meet throughout the parliamentary calendar to discuss current policy issues, hear from expert speakers and listen to members of the brain tumour community. In support of APPGBT members, MPs and Peers across Parliament, we publish briefings tailored to each meeting’s specific policy issue. These documents inform MPs and other activists of the latest developments in our campaigning.

These are the briefings for the last two meetings:

March 2022: Pathway to a Cure inquiry update

December 2021: Why we need a cure

Working within Parliament APPGBT Officers are elected on a yearly basis by their fellow Parliamentarians at the AGM – the most recent of which was in May. They work with the Chair and the Secretariat to support the APPG on Brain Tumour's objectives. They do this by maintaining the political momentum for change, using their political influence to ask questions and hold the Government to account, all with a shared vision of improving options and outcomes for those diagnosed with a brain tumour.

Currently the APPGBT Officers are:

Derek Thomas MP - Chair

Rt. Hon Alistair Carmichael MP - Vice-Chair

Lord Carlile of Berriew - Vice-Chair

Baroness Masham of Ilton - Vice-Chair

Helen Hayes MP - Vice-Chair

Dean Russell MP - Vice-Chair

Jane Hunt MP - Vice-Chair

Lord Polak CBE - Officer

Holly Mumby-Croft MP - Officer

Greg Smith MP - Officer

Elliott Colburn MP – Officer

On his re-election as the Chair of the APPGBT in May Derek Thomas told us: “I am honoured to continue in my position as Chair of this group and would like to give a huge vote of thanks to the Parliamentarians who are supportive of the APPGBT. We are motivated by the stories we hear from the brain tumour community, and I am really positive about the impact our current inquiry into the ‘Pathway to a Cure’ is going to have.

Change can’t come soon enough in terms of new options and better outcomes for brain tumour patients and it is the aim of all of us involved in the APPGBT to make a difference. It is a cause we all care very deeply about.”

This lack of progress for patients was highlighted in this story about a man with an incurable brain tumour is hoping to raise £250,000 for treatment not currently available on the NHS which also mentioned Optune ( a specialist non-invasive medical device being developed by Novocure who will be at the APPG) and DCVax, the developers of which NWBio gave oral evidence to the APPGBT inquiry – Brain Tumour Research are quoted in the piece too.

Rishi Sunak faced Keir Starmer and other MPs for the first time as Prime Minister at PMQs. It was great to hear some health questions asked - about waiting times and the recruitment of healthcare professionals.

The re-appointed (as of Thursday) Minister of State for Care, Helen Whately MP, highlighted the Care Quality Commission’s recent report, entitled “The state of health care and adult social care in England”, which showed that the health system is currently in gridlock. She urged the new Prime Minister to make unblocking the NHS a priority for him and his Health Secretary, and to address GP waiting times. Elsewhere, Heather Wheeler asked the PM to make it clear to the General Medical Council and the British Dental Association that, as well as opening more training spaces, they must allow new doctors and dentists to work in the UK. Mr Sunak responded that it was his intention to deliver a long-term workforce plan for the NHS and to ensure that everyone can get the care that they need.

Politico held their Annual Live Health Care Summit event:’ Pharma Strategy – Accessible, affordable and tailored medicines: a feasible reality?’ On the panel were health experts and European politicians. The broad message was that if Covid has taught us anything it is that there is a need for global solidarity. Ellen ‘t Hoen, Director of Medicines Law & Policy, added that European countries needed a “greater transparency of drug pricing and R&D”- as this had gone ‘out of the window’ during covid.

This week our Public Affairs Officer Thomas Brayford met with Bambos Charalambous MP – the Shadow Minister for the Middle East and North Africa – to discuss some of the issues and challenges faced by researchers in the UK. The Shadow Minister said that the uncertainty with the UK’s participation in the EU’s Horizon programme for research and innovation was a “big concern”. Mr Charalambous also echoed much of what was said by Shadow Secretary of State for Business and Industrial Strategy, Jonathan Reynolds, at the Labour Party Conference, including that “a strong research sector underpins so many areas of society”.

Thomas also attended the Welsh Cross Party Group Inequalities inquiry launch. Tackling cancer inequalities would have a huge impact on society. Cancer Research UK estimates that, in the UK, if all areas had the same cancer incidence rate as the least deprived quintile, this would result in around 22,000 fewer cancer cases a year.

Public Health Wales estimates that improving health equity between the most and least deprived communities could save the health service £322 million a year, particularly through reducing emergency admission and A&E attendance which is higher for the most deprived communities. The inquiry runs until early January 2023 and we look forward to its findings.

The 2022 National Cancer Patient Experience Survey (CPES) is looking for feedback from cancer patients to inform and improve local cancer services across all NHS Trusts in England.  

Questionnaires will start to be sent out by post to people chosen to take part in the survey from 17 November.

CPES results are used to monitor national progress on experience of cancer care and to drive local quality improvements. Research carried out as part of CPES has shown that certain demographic groups are consistently less likely to respond to the survey, including young people and some ethnic minority groups. CPES responses from those who have received treatment, in particular groups that are less likely to respond, are therefore crucial in order to ensure services understand their patients’ needs. They are therefore particularly keen to hear from these patient groups. 

The survey is designed to: ​ 

  • monitor national progress on patient experience of cancer care; ​ 
  • provide information to drive local quality improvements; ​ 
  • assist commissioners and providers of cancer care; ​ 

As reported in last week’s update Brain Tumour Research has been working with ‘EastEnders’ on a brain tumour storyline. On Wednesday night Lola Pearce, played by Danielle Harold, was given a GBM diagnosis.

Lola’s diagnosis with a GBM means that, like many patients diagnosed with this devastating disease, she faces a bleak prognosis. GBM is the most common type of primary high-grade brain tumour in adults. This tumour type is very challenging to treat and the average survival time is distressingly short – just 12-18 months.

Our aim is to ensure that this portrayal is realistic and sensitive. People reading this update will know just how devastating this disease is. Through Eastenders, more people will find that out and through the APPG more politicians will also find that out. The more people know then the more people will campaign for change and that energy will push towards and coalesce around the offices of people like George Freeman, and we know that he is already a sympathetic ear.

We are getting closer to real change in brain tumour research funding.

Stay with us, together we can do this.

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