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Lets Talk Parliament with Jeremy and Victoria

Jeremy and Victoria, two of our Young Ambassadors, recently attended our MP drop-in session at Portcullis House and have written about their experience

On 29 March, two of our Young Ambassadors, Jeremy Daubeny and Victoria Neill, attended our MP drop-in event at Portcullis House to speak with MPs about their experiences with brain tumours, and the key issues that have come through from our Improving Brain Tumour Care survey results.

Our Young Ambassadors are The Brain Tumour Charity’s spokespeople, they speak out on the issues that matter to our community. At the event, Jeremy and Victoria were joined by Kaz Melvin, one of our Involvement Champions, to speak to MPs about the important issues affecting brain tumour patients.

Victoria says, ‘as March was Brain Tumour Awareness Month it was extremely important to the charity and to us to engage with people who really have the power to make changes throughout the UK, who better than Members of Parliament! Our main role in the event was to share our connections to the Brain Tumour Charity, the short and long term aims and strategy as well as the results of our Improving Brain Tumour Care Surveys. We were met with an influx of MPs showing such admirable enthusiasm and engagement throughout the day.’

Jeremy adds, ‘It was an incredible experience getting to speak to those in our country who can rapidly accelerate brain tumour research. Our aim was to chat with MPs, share our own personal experiences and hope that this motivates MPs to lobby government on the charity’s behalf.’

In total we had over 51 MPs or their offices attend the drop-in session, including Derek Thomas MP who is Chair of the All Party Parliamentary Group (APPG) on Brain Tumours, and Jeremy Hunt MP who is the Chair of the Health and Social Care Committee.

Tonia Antoniazzi, the Chair of the APPG on Cancer also attended, with Tonia’s conversation with the Young Ambassadors making a particular impression on Victoria, she says ‘we agreed that to be able to go through trauma and loss from a brain tumour diagnosis, and use the pain and energy to strive to make a positive impact in the lives of others, even when it will make no difference to the hardship you have experienced is truly an act of courage and selflessness.’

Victoria also added, ‘I was humbled to hear the connection of several people to brain tumours, whether that be from a loved one, friend, a member of their constituent or themselves. Jeremy and I share a similar experience of having lost both of our dad’s to a brain tumour in early adulthood. Hearing about Jeremy and the rest of the teams’ experience, sharing my own and why we work for the charity was the most rewarding part of the day as it truly reminded me of the ambitious, determined and impactful people that are involved with the charity.’

At the event we shared the results of our Improving Brain Tumour Care surveys with MPs, focusing on three key areas where there are significant unmet needs, and variation in care across the UK, for brain tumour patients.

Jeremy says, ‘devastatingly often a post code lottery as to whether an individual receives crucial care from a Clinical Nurse Specialist (CNS) and the Charity passionately advocates for all brain tumour sufferers to have this foundational support. Additionally, a CNS will often carry out a Holistic Needs Assessment to create a concrete care plan. The story is much the same and so many miss out on this crucial assessment to make life that bit more liveable.’

The third issue we focused on was research participation, Victoria adds, ‘to accelerate medical innovation and, ultimately, find a cure we need those affected to be aware and be co-involved with research. As a Charity we are passionate about advocating for quality and consistent access to care across the UK and ensuring individuals are given the opportunity to participate in research and trials, so that each individual has the resources and support necessary to truly fight their battle with a brain tumour and to feel a sense of purpose to aid in medical advancements to help others fight for the same cause.’

The event was a great success, and the MPs who attended were very engaged with the issues we raised, and with Jeremy, Victoria and Kaz who shared their experiences and desires for change. We will continue to engage with the MPs who attended the drop-in event, and work with our Young Ambassadors to speak out for those affected by brain tumours.

Jeremy says, ‘The discussion we had with MPs really did seem fruitful for the charity! So many policymakers also have first-hand experience with brain tumours and could relate to our experiences. We saw the importance of awareness for bringing about change and also how keen so many MPs were to question ministers in Parliament.’

Victoria concludes by saying, ‘Being able to mingle with influential government officials was a bit surreal and reminded me of the true humanity we all have in us when it comes to the wish to improve the survival rates of brain tumours. From this event, I hope we have built upon and strengthened our current relationships within parliament and established new representation for our cause. The hosting of the event during Brain Tumour Awareness Month will spread awareness and push the need for improvement, ensuring that our Charity, patients, families, researchers and MPs all come together as a single ‘Voice for Change’.’

Share your experiences and help create change

By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.

Improving Brain Tumour Care Surveys