We discussed Faster Diagnosis in Parliament
Just before we launched our Fighting for Faster Diagnosis report and during Brain Tumour Awareness Month (BTAM), we hosted an event at Parliament with three of our incredible campaigners.
We wanted to highlight how important a faster diagnosis is for those affected by brain tumours and to raise awareness of the Better Safe Than Tumour campaign with Members of Parliament (MPs).
Afterwards, we spoke with Nicola and Katie who shared their experience of the event, their passion for campaigning for a faster diagnosis and what they hoped to achieve through their discussions with MPs.
Faster diagnosis: A message that needed to be shared
When outlining why it was important for them that MPs heard the message of the need for faster diagnosis for those who may be experiencing symptoms of a brain tumour, Nicola highlighted how it took seven years for her to be diagnosed. She explained that the delay “exacerbates the stress and anxiety that accompanies life with a brain tumour, can increase its side effects and can also lead to further health and wellbeing issues”.
Katie noted how her sister was diagnosed following multiple visits to the GP where her symptoms of severe, unusual headaches were dismissed. After eventually being diagnosed through A&E after becoming very ill, Katie explained how her sister had surgery to remove the tumour but has been left with life-changing health problems as a result.
Both Katie and Nicola agreed that it was important that MPs heard their personal stories to create change and to raise awareness.
Our campaigners’ highlight of the day
This was the first time that either campaigner had come with us to a Parliamentary event, but Nicola and Katie were eager to share their highlights from the day.
Katie said that a general highlight for her was “how engaged the majority of the MPs were. Not only when discussing our personal stories but also when explaining their role in raising awareness, with some directly asking how they could help in this regard”. Similarly, Nicola expressed that her highlight was “chatting to so many MPs, as both a patient and a parent bringing up a small child whilst living with a brain tumour”. And being able to talk about her many different experiences she had whilst being undiagnosed and then after diagnosis and surgery.
In the end, nearly 60 MPs attended the event and all of them were really engaged in discussions. Many also took photos and took symptoms cards from our Better Safe Than Tumour campaign as well as a paper providing a glimpse into our Faster Diagnosis report. We even ran out of symptom cards before the end because so many MPs had taken them!
The value of engagement
The engagement of MPs was certainly a key theme of the day, with Katie mentioning that she felt that she “was in the place where change could happen” and that it was “great to share my sister’s story in the hope that it inspires change”. Likewise, Nicola says it was “invaluable” to have the opportunity to talk to those who have the influence to improve diagnosis times.
Following on from the event, Katie says that she would love to see “MPs engaging with the charity’s report on faster diagnosis and also to see them taking steps to promote awareness”.
Nicola noted that she has seen some MPs already tweeting their photos from the event on Twitter. Which she reckons that “this has made an important impact already. Further involvement and support towards the Faster Diagnosis campaign in all ways possible will continue to strengthen our voice and towards ‘Accelerating a Cure’.”
Join our campaigns network and create change
Interested in sharing your experience of being affected by a brain tumour? Become one of our campaigners today!
By taking part in our engagement work, you’ll help us create the change needed to raise awareness of brain tumour symptoms and achieve faster diagnosis.