Grace (pictured fifth from left), along with other Young Ambasaadors gave key speeches at Parliament on Tuesday as they attended the APPG (All-party Parliamentary Group), chaired by Derek Thomas MP, to raise concerns about their experiences of living with a brain tumour diagnosis.
Grace writes: “The APPGBT wants to shine a light on these costs, both economic and social, which have not yet been fully set out in relation to brain tumours. There may be costs that they don't see, or that simply aren't fair, so we should take steps to highlight and address them.
The APPGBT is launching an Inquiry into the economic and social impacts of brain tumours to better understand the true cost of brain tumours in the UK for patients and their families as well as the NHS, from the appearance of symptoms right through to treatment and beyond.
A few of us Young Ambassadors attended, and spoke about things that were important to us in our journeys with brain tumours.
First, Abigail Clement spoke about her experience being diagnosed at a young age and feeling immediately isolated from other children. It took her years to find appropriate support in The Brain Tumour Charity – years spent in and out of school, with barely any friends and always being teased and taunted by other children.
Then Tilly O'Brien told us about her treatment in hospital, and how nervous she was to someday make the transition from the children/young persons' area into the adult. She also mentioned the difficulties she's come across having her condition at 19, which included starting university feeling like she's miles behind all her peers, and being unable to drive due to her body's weaknesses post-op and tunnel vision in both eyes
Chandos Green was up next, and he had a lot to say about the lack of employment opportunities for young people with brain tumours. Chandos has missed out on many jobs due to his illness, and unfortunately has also encountered a few characters in education who have made him feel he needn't bother trying to find employment, given his limitations.
Quite a few of us chimed in at this point with our own stories – including me, who has experienced both amazing care in a job (being signed off for several months, with sick pay, due to unexpectedly needing another operation and then being eased back into work with just a couple of short shifts per week post-op) and also unpleasantness and intense pressure to leave a position after mentioning my illness to a manager and some colleagues.
Then it was my turn. I said a few words about the treatment of young people with brain tumours, and what they should be entitled to. My main point was: young people should be taken more seriously. I shared an anecdote to support this quite bold statement; when I was suffering with debilitating symptoms months before my diagnosis in 2014, my university-assigned GP was dismissive and cold towards me when I explained the loss of function in my limbs. I then jumped through numerous hoops, for several weeks, before finally having the right test done – only when a neurologist scheduled it 'just in case'.
I also spoke about the awful situation my family found themselves in when my consultant got my scan results and called my parents, not me – despite me being a few months shy of 21, and having given them my mobile number as my first point of contact. This then meant my dad had to tell me what was wrong, and that is something no parent should have to do.
Jordan Toms was brief in sharing his experiences with the DVLA, but later when we opened up the floor to more questions, I raised my hand and asked that we return to the subject – because like every other subject spoken about in this meeting, I had a story and an opinion. And that was that the DVLA were very trigger-happy with revoking licenses, and were too reluctant to return them.
Mine was taken away 'for six months' when I was diagnosed in June 2014, but then it was not returned to me until August 2016. And I maintain that was only because in the end I was calling them and demanding it back for the best part of 12 weeks.
Jordan's concerns came from the DVLA taking his license for 3 years, and despite him being seizure free for that long, it still has not been given back to him. Also, when it was taken from him, they recorded his chemotherapy as his primary treatment, which was not correct. He'd in fact had radiotherapy before then, but for some reason they wouldn't shorten the length of holding time accordingly.
Derek Thomas's summary and overall verdict at the end of this meeting was: “not enough is being done for young people with this condition. We as a nation are in dire need of more research to be done into brain tumours, and people need to be not only more aware but also more understanding.”
Whether it's employers, our peers, or the DVLA...we need to be taken more seriously and have more opportunities.”