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A Young Ambassador’s lobbying experience

Jeremy, one of our Young Ambassadors, recently attended an online lobbying event organised by the All-Party Parliamentary Group on Cancer and wrote about his experience.

On 27 October, one of our Young Ambassadors, Jeremy Daubeny, attended a Virtual Rally event organised by the All-Party Parliamentary Group on Cancer (APPGC) to speak with MPs and changemakers about his experience with brain tumours and the cancer workforce. 

Our Young Ambassadors are The Brain Tumour Charity’s spokespeople, they speak out on the issues that matter to our community. During the Virtual Rally, Jeremy both heard from and spoke to MPs, healthcare professionals, and other campaigners about how vital investment into the cancer workforce is for the cancer community.

Jeremy says, “Despite the call being over Zoom, immediately I was struck by the passion of all involved. Cancer is of course an injustice in itself but all those attending stressed the need for urgent investment into the cancer workforce, in order for patients to avoid facing a second injustice, a lack of necessary cancer care.

To begin we heard from a range of experts on cancer care in the NHS. These included the Chair of the APPCG, Tonia Antoniazzi MP, Macmillan’s Lead Cancer Nurse, Mark Foulkes and Shirley Cochrane who has sadly experienced the struggles of a diminishing cancer workforce first-hand. A lack of NHS support left Shirley in a state of severe anxiety as she was forced to ‘self-manage’ breast-cancer following the end of her treatment. She was given barely any guidance and just a generic phone number which rarely got through to the right person. Someone so deserving of emotional and physical support from her health service was left abandoned.”

Jeremy attended the event alongside two healthcare professionals who work as Clinical Nurse Specialists supporting those with brain tumours, and two staff members from The Brain Tumour Charity. All of those attending then had the opportunity to join one of the breakout rooms which involved over 70 healthcare professionals and campaigners from other cancer charities, alongside MPs.

In the breakout rooms Jeremy shared his personal story and listened to others speak about the impact of the cancer workforce on their ability to carry out their work to the standard would like to, and the impact for others on their cancer diagnosis and treatment.

Jeremy says, “The reason I began to fundraise for The Brain Tumour Charity initially was in memory of my dad, Giles, who was diagnosed with a glioblastoma in November 2017. However, this was not the end of the story, as he was then diagnosed a month later, with a benign tumour. Two weeks later, after a life-threatening operation, the diagnosis returned to his initial glioblastoma. It was absolutely heart-breaking to gain such false hope. 

“During a recent fundraising trip, I cycled around Britain in aid of The Brain Tumour Charity and stayed with all sorts of different characters. One stop off that has really stayed with me was with a GP just outside of Glasgow. I told her about my dad’s experience with cancer healthcare professionals and she explained how she once misdiagnosed someone with a terminal illness and it keeps her up at night to this day. In no way does my family hold any individual responsible for his repeated misdiagnosis as everyone in the NHS does their absolute utmost for the patient. However, as this GP explained to me, NHS staff are so severely overworked due to a lack of staff that it is simply impossible for them to give the care cancer patients deserve. I could not stress more that immediate further investment is needed into cancer related jobs and care.

Healthcare professionals in the breakout room could not echo the thoughts of that GP more. I got the opportunity to speak to Henry Smith MP who patiently listened to all of our worries with the state of the cancer workforce and made clear that the APPCG would communicate these concerns to government.

Despite the upsetting context of the meeting, the Zoom call really did illustrate the importance of organisations such as The Brain Tumour Charity. Without an outlet, stories such as the painful experiences of my Dad could die but forums such as this bring hope for seismic change.”

Our 2016 report ‘Finding Myself in your Hands: The Reality of Brain Tumour Treatment and Care’ found that one in three respondents said they did not have a single point of contact with their healthcare team whom they could go to straightaway if they had concerns.

This event provided a great opportunity for MPs to meet with individuals affected by cancer, and those in the cancer workforce, to hear first-hand why investment is so incredibly vital to improve the experience for all of those affected by cancer. We will continue to engage with the APPGC on this important topic, and work with our young ambassadors to speak out for those affected by brain tumours.

Jeremy sums it up best; “Expanding a workforce will of course take time but with a proper strategy and appropriate funds, those suffering can receive the support they so desperately deserve.

How did The Brain Tumour Charity respond to the Spending Review?

As part of the One Cancer Voice collective, we recognise and welcome commitments in the Spending Review, notably the additional investment to tackle the backlog and the capital investment for Community Diagnostic Centres which will play a critical role in improving diagnosis of cancer. But we’re calling on the Government to clarify their commitments to strengthening the cancer workforce in the UK.

Find out more