Hello everyone,
After the excitement of last Friday and the passing of the Rare Cancers Bill through its third reading in the Commons, this week provides a chance to reflect on an extraordinary week.
Last Monday, Hugh joined a panel which included Scott Arthur MP and colleagues from The Brain Tumour Charity and Pancreatic Cancer UK. The panel was chaired by Sonia Khan and hosted by H/Advisers Cicero who, through Sonia and her team, has provided immense support and expertise for the BiIl’s progress so far.
Hugh gave a short presentation at the event and this is part of that presentation:
“Any coalescence, any collaboration begins with a conversation and that conversation happened at the September 2024 Labour Party Conference held in Liverpool.
“There, Scott Arthur attended a fringe event hosted by the Chair of the APPG on Brain Tumours, Dame Siobhain McDonagh.
“At Brain Tumour Research we know Dame Siobhain well, as we provide the group’s secretariat.
“Siobhain was keen to put forward her own Private Member’s Bill on glioblastoma (the most common malignant brain tumour) which killed her sister and Labour Party legend Margaret last year. Siobhain wasn’t successful in the ballot, but Scott was and he was at a fringe event around brain cancer organised by Siobhain and there he met and got talking with my colleague Thomas Brayford. We discovered that Scott’s father-in-law had died following a glioblastoma diagnosis.
“Thomas discussed with Scott the findings of the APPG on Brain Tumours 2023 report ‘Pathway to a Cure – Breaking Down The Barriers.’
“Scott initially thought of presenting his Private Member’s Bill on glioblastoma but on 16th October at its first presentation to Parliament it had widened its focus to a Rare Cancers Bill.
“Of the more than 2,500 PMBs introduced between 2010–24, just 110 have received royal assent.
“To quote Scott from the Committee Stage held on 2nd July: ‘If it passes - and I really hope it does - it will incentivise and create an environment in which more research into rare cancers is fostered, potentially helping us to save, in the longer term, perhaps thousands of lives. What an aspiration that is.’
“If a conversation to collaboration to conversion happens and we see the Rare Cancers Bill enacted in 2025 - it will be the privilege of my fifteen-year career at Brain Tumour Research to have been a part of that journey.”
The following day we were with Scott again, this time at the House of Lords, meeting members of the Upper House, to prepare, inform and guide them through the Bill.
This provided us with an opportunity to touch base with Lord Sharpe of Epsom again (pictured above with Scott and Hugh).
Lord Sharpe has himself experienced the devastating impact of a brain tumour, when his son, Charlie Sharpe, was diagnosed with a germinoma in 2019, while in his early 20s.
Also present at the drop-in event were Baroness Finlay, Baroness Sugg, Lord Randall and Lord Moylan who sponsored the event and to whom we are extremely grateful.
Then, on Thursday last week, with the threat of late amendments to the Bill hanging over us, so many of you acted on my campaigning request for you to contact your MP asking them to express support for the Bill as it was and, if possible, stay in Westminster to vote in favour of the Bill, should a division be called.
You did this in remarkable numbers and we are so hugely grateful to you all.
In the event, the amendments were dropped but what was achieved by us, working with urgency and with your support, cannot be undone – it can be redone though, and it shows the power rests with us.
So, after the excitement of Friday, what happens next?
Heading into the Lords, the process is the same as it was in the Commons. Exact dates are unknown at this stage, but we do know there will be three readings and a Committee Stage.
The first reading has already happened, as you can read here.
Baronesses Elliott and Finlay will help guide the Bill through the Lords and Scott is setting up a meeting for all of us in between summer recess and conference recess.
We think it likely that the real action won’t happen until everyone is back at Westminster in October but there is no King’s Speech this year, so there is less time pressure than there might have been.
Last week was an extraordinary piece of collaborative work which we were proud to be a part of – but we won’t take our foot off the gas. The coalition working on this Bill will do whatever we can to support a smooth passage through the Upper House.
Our cause is too important not to be approached with urgency – the urgency our community rightly demands of us. We are determined to have the Rare Cancers Bill become an Act of Parliament in 2025.
On reflection, this has been all about the power of individual campaigners, perfectly expressed in a video we made with veteran campaigner Peter Realf last summer. You can watch that video here.
Finally this week, the Government launched their Life Sciences Sector Plan which outlined targeted actions to support world-class research and development, attract investment, grow advanced manufacturing, and accelerate health innovation. On first read, it is clear that the Government has commitment to changing processes to support greater availability of innovation for patients across the country. Key actions that jump out are:
- The Government will continue large-scale investment in early-stage discovery science
- The Government will establish pre-clinical translational infrastructure to: advance pre-clinical models as alternatives to animal testing; and develop up to three integrated translational networks focused on key health research areas
- A reduction in the bureaucracy of clinical trials
- The promotion of closer coordination and collaboration across UK Health and Life Sciences research funders
We will investigate further and see where our vision and the plan align but that’s it for this week.
Parliament at Westminster goes into recess next Tuesday (the devolved Governments in Scotland and NI have already finished sitting for the summer, with the Senedd taking a break from the 21st) and next week’s update, the last one before our summer break, will be a review of the first campaigning year with a new Government.
Wishing you all a peaceful time until next Friday.
Karen, Hugh and Thomas.
