Wales, Scotland and Westminster

Here’s Hugh with his #WearAHatDay photo from last year – it will be a different hat next Friday!

On Friday, we were in the Gallery of the House of Commons, which is open to the public, as hopes of new treatments to increase survival rates for patients with rare cancers received a boost with the unanimous support for Dr Scott Arthur’s Private Members’ Bill to promote more research and clinical trials.

His Rare Cancers Bill passed its Second Reading after more than three hours of debate, with the Government announcing its support and saying it would do all it could to ensure it becomes the law.

The Bill would initiate a review of “orphan drug” regulations which could incentivise companies to trial existing cancer drugs for treating rare cancers, encouraging life-saving treatments to be trialled in the UK.

It would also promote clinical trials by requiring the Government to appoint a named person to provide leadership on the delivery of rare cancer research and creating a single UK database for clinical trials and patient data on an opt-out basis, giving patients increased access to trials and giving researchers easier access to relevant patients.

More than 20 MPs from across the political spectrum spoke during the debate, many relating the stories of friends, relatives or constituents who had suffered with rare cancers. A large number of you made direct contact with your MPs following our requests for your support in previous updates. We hope you feel suitably proud of what we have achieved together so far.

At the end of the debate Ashley Dalton, Minister for Public Health, told the House: “On behalf of the Government, it is my great pleasure to pledge our support for the Bill. We are undertaking fundamental reform of the NHS. People living with rare cancers must be at the heart of that change. Rare cancer patients deserve better, and the Bill gives them something that has been spoken about across the House today: new hope.

“Clinical research is one of the most important ways in which we can improve healthcare, by identifying the best way to prevent, diagnose and treat cancer.

“The Government are committed to making a real difference for patients with rare cancers. For those affected by this devastating disease, every discovery, every treatment and every moment matters. We will do all we can to facilitate the passage of this Bill.”

While passing the second reading with unanimous cross-party support is a significant milestone, the Bill still has 10 more stages to pass before becoming law. At Brain Tumour Research we will continue to support Scott every step of the way.

Hugh and Thomas alongside Scott and other charity campaigners on a Westminster terrace, minutes after the Bill had passed to second reading.

This week, Brain Tumour Research was in Cardiff at the Senedd to highlight the need for better access to clinical trials and innovative treatments for brain tumour patients in Wales.

We brought together supporters Rhys Holmes and Debra Gibbon (pictured with Thomas and Rhun ap Iorwerth, the Leader of Plaid Cymru), who shared their personal stories –emphasising the gaps in treatment and research for Welsh patients.

Brain Tumour Research met with several Members of the Senedd (MS) to discuss findings which reveal that, while brain tumour incidence and mortality rates in Wales are comparable to England, Welsh patients face significant disadvantages when it comes to accessing trials.

Members of the Senedd heard how:

• A lack of clinical trials outside Cardiff means many patients miss out on life-extending opportunities, as travel can be prohibitive
• Awareness of available trials is low among both patients and clinicians
  
• Cross-border complications between Wales and England result in eligibility discrepancies, leaving Welsh patients disadvantaged compared to their English counterparts

Brain Tumour Research is now urging the Welsh Government to take decisive action by:

• Expanding the number of brain tumour clinical trials available in Wales
  
• Improving infrastructure and awareness so patients and clinicians can easily access up-to-date trial information
  
• Increasing investment in brain tumour research to position Wales as a leader in innovative treatment development

“For patients diagnosed with brain tumours, time is critical,” Rhys said. “We need equitable access to research and trials so no one in Wales is left behind.”

Debra added, “The heartbreak of this disease is only made worse when patients realise they have fewer options than others across the UK. That must change.”

Brain Tumour Research is committed to pushing for better support, investment and action so that Welsh brain tumour patients are given the best possible chance at life-saving treatment and trials.

A Cross-Party Group of Scottish Parliamentarians has written to the Cabinet Secretary for Health, raising alarm over the exclusion of Scottish brain tumour patients from a key clinical trial of Proton Beam Therapy (PBT) available elsewhere in the UK.

The Cross-Party Group (CPG) on Brain Tumours, headed by Convener Beatrice Wishart MSP (pictured above), for which Brain Tumour Research provides the secretariat, highlighted concerns that patients in Scotland are currently unable to access the groundbreaking APPROACH trial, which is exploring whether PBT can significantly improve cognitive outcomes for people with primary brain tumours. While patients in England and Wales are participating in the study, Scots are being left behind due to a lack of funding to cover excess treatment costs – estimated at £100,000 per patient.

Professor Anthony Chalmers, Chair of Clinical Oncology at the University of Glasgow and Co-Lead of our Scottish Brain Tumour research Centre of Excellence, briefed the group at a recent meeting on the promising potential of PBT. Unlike traditional radiotherapy, PBT delivers highly targeted radiation to tumours, reducing damage to healthy brain tissue and helping preserve patients’ cognitive abilities.

However, the group has warned that Scotland’s failure to fund the additional costs associated with the trial, risks widening health inequalities. NHS England and the Welsh Government have already put financial measures in place to support their patients’ participation, but no such provision currently exists in Scotland.

In their letter, the MSPs urged the Scottish Government to follow the example set by England and Wales by establishing a dedicated fund to remove this financial barrier.

“This is a matter of fairness and equity,” the letter reads. “Scottish patients deserve the same opportunity to benefit from cutting-edge treatments and to contribute to vital research as their counterparts elsewhere in the UK.”

The group, headed by Convener Beatrice Wishart, has called for an urgent meeting with the Cabinet Secretary to discuss potential solutions and ensure no Scottish brain tumour patient is denied access to potentially life-extending and life-enhancing therapies.

The Scottish Government has yet to respond to the letter.

Credit: Owen Billcliffe Photography (@owenbphoto)

At a celebration gala dinner last week, held at The Dorchester Hotel in London, we launched our Impact Report, showcasing our achievements in the fight to find a cure for brain tumours.

The impressive document details 15 years of pioneering advancements in research at our Centres of Excellence, outlining the progress we have made in moving towards personalised treatments, repurposing medication, using blood testing in diagnosis, enhancing surgical precision and accelerating the launch of clinical trials for children, to name but a few.

These achievements and more were brought together in a powerful film that was presented on the night, narrated by broadcaster and Brain Tumour Research patron Sarah Beeny.

Amongst the 300 attendees at the black-tie event, made possible by the generosity of our sponsors, were our Patrons Caprice Bourret, Pete Waterman OBE and Danny Clarke, as well as Theo Burrell, who gave an impassioned speech about living with a glioblastoma.

TV presenter Davina McCall, actress Dame Sheila Hancock, singer Clare Grogan, and presenter Johnny Vaughan also attended to show their support. They were joined by Qian Zephaniah, the wife of the late Benjamin Zephaniah, poet and activist, who died from a brain tumour, plus Ambassadors Abi Feltham and Sam Suri, both of whom are living with a brain tumour.

Patron Alfie Boe OBE closed the evening with an exclusive performance, moving the room with his music as well as memories of his father, Alfred, who he lost to a brain tumour when he was just 23. He invited guests to bid on exclusive tickets to his upcoming concert with Michael Ball, plus a meet and greet, in aid of the Charity.

Alongside bidders vying for Alfie's generous gift, guests pledged donations throughout the night to raise an incredible total of more than £30,000, ensuring that we can keep moving ever closer to a cure.

Follow this Facebook link to enjoy more photos of this very special evening and there is more on the report launch and last week’s appearance by Sarah and Hugh on BBC Breakfast here.

Next week there will be more news from Holyrood (fingers crossed featuring a special hat wearer) and it will be Wear A Hat Day.

What hat will you be wearing?

Keep an eye on our social media to see if your MP or a favourite celebrity is taking part.

Wishing you all a peaceful time until then,

Karen, Hugh and Thomas.