When Brain Tumour Research Funding was debated on Thursday 9th March, Hansard recorded Holly Mumby Croft MP for Scunthorpe talking about her constituent Nicki Hopkins and saying “Like many Members, I took a keen interest in this issue because of a constituent of mine, David Hopkins, who sadly was diagnosed with a brain tumour. He features in the All-Party Group’s Report. In September 2020, David went to Scunthorpe General Hospital because he was unwell. That was right in the middle of the covid pandemic, so he was alone and had to go through the experience without his family with him. He was given the devastating news that he had a brain tumour—a glioblastoma. As we have heard today, the life expectancy of a person who is diagnosed with a glioblastoma is between 12 and 18 months, so it is an utterly devastating diagnosis to receive for a family man and a very much-loved member of our community.
David underwent bouts of chemo and radiotherapy, and he sought personalised immune therapy in Germany that cost £150,000. Unfortunately, a scan in April 2021 showed further tumour progressions and he had to have two craniotomies. By the following July, David had exhausted all treatment options that the NHS could provide for him and began NeoPeptide vaccine treatment, again in Germany. Sadly, this did not save David and he died in November 2021, leaving behind his children, Dylan, Lydia and Sydney, and his wife Nicki. I should say that Nicki is a force of nature. We are incredibly proud of her in Scunthorpe. She has gone on to raise funds for Brain Tumour Research and she ran the London Marathon. I commend Nicki for the work that she has done in this area.”
Holly also nominated Nicki for an award as a Community Champion and invited her to a Downing Street reception which was held on Wednesday evening.
As you can see Nicki attended and is photographed here alongside Holly and the PM, Rishi Sunak.
Since losing Dave (aka Did), just 14 months after his diagnosis, Nicki Hopkins has been a tireless Brain Tumour Research campaigner. She has also set up a Fundraising Group under our umbrella known as Team Hopkins – Winning for Did which has raised more than £48,000.
Nicky told us: “It’s all been a bit of a whirlwind. I only received the invitation to Downing Street last Friday 17th March. To be honest, it felt bittersweet as I really don’t like praise. I know Did would be proud of me, but all I want is change to the ridiculous situation that just 1% of the national spend on cancer research has been allocated to brain tumours and significantly keep Did’s legacy alive.
“In my head I could hear Did laughing as I made my way to Downing Street. In his words, he would be ‘buzzing’!”
Struggling to come to terms with Did’s diagnosis with an incurable and terminal glioblastoma (GBM) brain tumour in 2020 led Nicki to reach out to her MP to expose the chronic underfunding of research into the devastating disease and in turn led Holly to raise the couple’s case in Parliament, asking a Prime Minister’s Question. Holly went on to become a member of the APPGBT committee and worked as a committed member of the inquiry panel.
Nicki who is training to become a teaching assistant, said: “This began as something way out of my comfort zone, but I owe it to my gorgeous husband and to all the other brain tumour patients and their families I’ve met on this journey so far.”
Many of the team here have supported Nicki from her time travelling to Germany to try and save her husband’s life to her setting up of the fundraising group and the countless pieces of radio, TV and press she has been involved in.
She was nervous on Wednesday but proud and she felt Did would have been proud of her and as Holly Mumby Croft said in the debate “Scunthorpe is proud of her.”
We are proud of her.
Nicki’s journey from a German hospital to Number 10 says everything about her but also about Brain Tumour Research and our activists and campaigners, who we are and why we do what we do.
To read Did’s story go to www.braintumourresearch.org/stories/in-our-hearts/in-our-hearts-stories/dave-hopkins
Also at Westminster on Wednesday was the hand in for the One Cancer Voice Petition demanding action to tackle Britain’s cancer crisis.
Uzmah Yunis (pictured above), who lost her husband Laurent Viteau, aged 50, in August 2021 to a glioblastoma (GBM), was there with representatives of 61 other charities which united under the banner of One Cancer Voice. She was one of only three charity campaigners to hand the petition into Number 10.
The 80,000-name petition calls on the Government to take urgent action to help the 445,000 people who Cancer Research UK say will be diagnosed with cancer in Britain next year and in each of the following five years if trends continue. The figures show a rise of almost 10% on current numbers.
We are proud to be part of this important coalition standing alongside other charities such as Blood Cancer UK, Lymphoma Action and Pancreatic Cancer UK. We are united in calling for the Government to make a firm commitment to transform research, diagnosis, treatment, and the experience of patients.
It was a powerful event, with so many charities coming together to demand the same thing – that the Government addresses the cancer crisis, makes a firm commitment to an ambitious, long-term and fully-funded cancer strategy. As well as Uzmah the Chair of the APPGBT Derek Thomas MP and APPBGT stalwart Hilary Benn represented our brain tumour community at the Number 10 hand-in.
As Derek said, “We need the government to make sure people who have cancer also have hope.”
Together with over 40 members of the Neurological Alliance we’ve written an open letter to the Secretary of State for Health and Social Care, Steve Barclay, urging him to include neurological conditions as part of the proposed Major Conditions Strategy.
The strategy is a golden opportunity to improve care and support for our community but for that to happen then, of course, the first step is for our community to be included.
In what has been called “the biggest overhaul of trial regulation in 20 years”, the Medicines and Healthcare products Regulatory Agency (MHRA) is introducing a new series of measures to make it faster and easier to gain approval and to run clinical trials in the UK.
The new framework “ will help to make the UK one of the best countries in the world to conduct clinical research for patients and researchers”.
The changes follow a public consultation which ran between January 2022 and March 2022, in which the responses from the public and research community were invited.
Under the new framework, clinical trial application processes in the UK will be more proportionate, streamlined and flexible without compromising on safety, helping to cement the UK as an attractive destination for trials, including global “multi-site” trials.
Health and Social Care Secretary Steve Barclay, said: “These changes will help speed up clinical trials, without compromising on safety, and encourage the development of new and better medicines for patients. They come after the government announced additional funding of £10 million for the MHRA to accelerate the delivery of cutting-edge treatments including cancer vaccines.”
Brain Tumour Research fed into the consultation process and welcomes change that we hope will mean more brain tumour patients are able to access more clinical trials.
Currently only 5% of brain tumour patients are entering the limited number of trials available so any route to improvement in the numbers of brain tumour patients able to access clinical trials is welcome. It is also vital that there is equity of access too and there needs to be a UK database highlighted and readily accessible to all clinicians across the UK, with clearly defined and regularly updated eligibility criteria and location information.
Our mission is for early stage research that leads to clinical trials and therapeutic breakthroughs because our vision is to find a cure for all types of brain tumours and that of course includes the awful paediatric monster that is DIPG.
There has been moving reaction following last week’s news of the fourth Brain Tumour Research Centre of Excellence being at The Institute of Cancer Research (ICR) with bereaved families welcoming the announcement and the hope that it brings. whilst, from Member Charity, Shay’s Smiles Niki O’Dea, says “I am delighted that Brain Tumour Research is funding this important work but we will continue to press for the Government to act now and increase investment to help charities fighting to find a cure for this devastating disease.”
Based in Sutton, Surrey, the team at our new Centre, led by Professor Chris Jones, has ambitious plans to identify new treatments for high-grade glioma brain tumours – which include those previously known as brainstem glioma and diffuse intrinsic pontine glioma (DIPG) – occurring in children and young adults.
The new Centre at The ICR will act as a crucial bridge connecting worldwide research and analysing findings which will help inform and enable the setting up of much-needed clinical trials. Find out more about here.
As a research funding and campaigning charity Brain Tumour Research is here to provide the hope that new research and the push for political action can give. Your stories are our stories because for so many of us this is a very personal cause. Wherever you are on the brain tumour journey we are here to give you your voice and to amplify it so it is heard in science labs and the corridors of Westminster.
There has been real momentum this Brain Tumour Awareness Month and momentum leads to money and with money we can get closer to a cure - without it we can’t.
Thank you for helping us to create that momentum and for your tireless tenacity, it really does make a difference.
There will be another update next Friday which is also #WearAHatDay – Look Super for Science!