Brain Tumour Research, along with other charities in the health sector, participated in this year’s Health Charity Showcase at the Labour Party Conference.
The event was organised by Hanover Communications with the aim of shining a light on the role of charities in redefining health and social care over the next decade for the National Health Service (NHS) and patients.
The Secretary of State for Health and Social Care, Wes Streeting, attended the crowded event. He said that the organisations present were important to him, and to the new Labour Government. Moreover, that the Government wants to work with the sector to harness the vast amounts of energy, evidence, data and insight, to bring about meaningful change.
He declared: “To build a National Health Service fit for the future, we need you on our side. We need you on our team to do something that is an enormous challenge, but a challenge, if achieved, will leave a real legacy for our country.”
The Secretary of State called for collaborative working and said that he valued the sector’s expertise: “We really value your role in advocacy and the contribution you can make in the discussion about public policy making. The days of trying to silence inconvenient truths are over.”
Also present at the event were members of the Health Team, including Minister for Secondary Care Karin Smyth and Minister for Care Stephen Kinnock. Additionally Minister for Public Health and Prevention Andrew Gwynne, and Minister for Mental Health, Women’s Health and Patient Safety, Baroness Merron also attended, along with various special advisors.
The Health Secretary ended by explaining the Government’s vision of mission-driven government. For it to be effective, it needs cross-government working, as well as charities, businesses and civil society.
Brain Tumour Research spoke with Mr Streeting about the need for more brain tumour research, the gaps in the treatment pathway, and the importance of addressing the barriers to market access for the latest medicines. The Health Secretary said that he was committed to improving the situation for the brain tumour community.
Thomas, pictured above with Wes Streeting said: “By government working together with us, and the wider brain tumour community, we can improve the lives of those affected by brain tumours, across the UK. Together we can help drive things forward, giving us the momentum we need.”
Thomas and Baroness Merron in Liverpool
Thomas has written a personal view after attending the Labour Party Conference.
"This year's rain-soaked Labour party conference was served up as a cocktail of anticipation and apprehension. In between attending fringe event, I met with members of the Lords, Commons and charity colleagues from the cancer and neurological world.
"The Secretary of State for Health and Social Care Wes Streeting was certainly in demand for a second year running. Mr Streeting appeared at numerous fringe events, where he repeated his mantra that the NHS has the choice of “reform or die”, with die not being an option."
You can continue reading his blog here.
Minister Nesbitt (centre) pictured with Cara Hunter MLA and Hugh Adams
On Monday Brain Tumour Research held a drop in event for the Northern Ireland Assembly in the magnificent Long Gallery at Stormont.
The event was sponsored by Member of the Legislative Assembly (MLA) Cara Hunter, who we have been in contact with since she disclosed her own brain tumour diagnosis. She later visited Westminster, where she met then-Chair of the All-Party Parliamentary Group on Brain Tumours (APPGBT), Derek Thomas.
This was a chance to talk to MLAs about this devastating disease, and explore how MLA’s might be able to support Belfast-based researchers leading the fight against the disease.
Attendees heard from Colin McMillan, Chairperson of Brainwaves NI (a member charity of Brain Tumour Research), researchers at Queen’s University in Belfast, and Evie MacKerracher and her mum Kerrie.
Kerrie has had to face hearing the news "your child has a brain tumour" not just once, but for two out of her three children. Her daughter Evie, now 16, who was diagnosed with a DNET brain tumour when she was just eight, said:
"MRIs are basically my second home, I’m so used to them now I can actually sleep through them.
"When the words “you have a brain tumour” came out of my parents’ mouths, I knew my life would never be the same again. No matter how bad the battles are, I will not let my tumour define my future. "
Kerrie stunned attendees when she told them: ”Evie is not our first foray into the world of brain tumours. She is our second child to have one. In 2010, our eldest boy, Ewan, was diagnosed with a brain tumour. He was five, Evie was two and I’d just given birth to our third child three weeks previously.
"We are tired of fighting. Fourteen years of living with brain tumours and dealing with the healthcare system. I know that we are one of the 'lucky' ones in that our children are essentially healthy teenagers, who didn’t require chemo.
"I would love to say that the end is in sight for us, but we don’t know what the outcome of October’s surgery will be and how much longer we will have to fight for."
We were delighted that Health Minister Mike Nesbitt was able to join us on Monday, and, clearly moved by what he had heard, he said he was ready to “take on the challenge”.
Also at Monday's event we had time to fully explain our position and our ambitions to Committee for Health member Nuala McAllister MLA who said: "It was helpful to get a briefing today regarding the lack of research into brain tumours, and the access to research and clinical trials in Northern Ireland. I will continue to raise this issue at the Assembly and ensure there is adequate priority given to the issue."
However, it is important to stress that there is great work being undertaken there and researchers spoke to their MLAs about their research including investigations into:
- how glioblastoma cells develop resistance to radiotherapy and chemotherapy
- researching a new form of radiotherapy for brain tumours that delivers treatments in less than a second
This was a very encouraging turnout for an event that had positivity at its core. It is the beginning of the conversation and we are optimistic we can work with MLAs to support the exceptional work already underway in Northern Ireland.
We have reported on Vorasidenib many times in these updates and a NICE consultation (named "Vorasidenib for treating astrocytoma or oligodendroglioma with IDH1 or IDH2 mutations after surgery in people 12 years and over") on the therapeutic is taking place with a deadline for submissions of Monday. We will be submitting and sharing the thoughts and experiences of some of our campaigners. Evan has been supported by NICE and been at a training webinar to make sure we submit our responses according to the appropriate protocol and ensuring there are no barriers to your voice being heard.
A quick update on the APPGBT. Charlie Maynard, the Lib Dem MP for Whitney, has been added to the list of members of the group. We now have 23 members but really want to add to that number so please do ask your MP to engage with us. There is a template letter you can use here.
A scan image showing a white mass which was diagnosed as a meningioma
A research project is seeking the improvement of a patient-centred quality of life questionnaire, the “MQoL-Q”, for meningioma patients.
Their goal is to improve the ‘MQoL-Q’, so that it reflects the experiences and perspectives of patients who had/have meningioma tumours.
Please consider participating if you are over 18 years of age and:
- Have been diagnosed with a meningioma tumour
- Within the past 10 years had surgical removal of the tumour or neuro-oncological intervention for the meningioma
The survey will ask you about:
- Your symptoms
- Medical treatments/interventions you pursued
- Personal, social, and family wellbeing
- Coping and emotional wellbeing
- Sources of psychological support
The survey may be completed independently, or with the assistance of a family member/friend or healthcare provider if needed. The entire survey will take approximately 25 minutes to one hour to complete.
Your contributions are highly valued and appreciated! Your input will help shape this questionnaire in order to improve the care of other patients with meningioma.
Please click here to access the survey.
If you have any questions about the study and/or participating, please contact the study coordinators at braintumors@smh.ca.
We will be back next Friday with Thomas reporting from Birmingham and the Conservative Party conference and I'll be meeting with my new MP.
Wishing you all a peaceful time until then.
Hugh, Thomas & Evan