Why we need a National Brain Tumour Strategy: Simon and Ella’s story
Meet Simon and Ella and learn about why Ella believes a National Brain Tumour Strategy is a No Brainer!
By Helen Rogers
On 29th February, 34 members of the brain tumour community came to Westminster to launch our campaign calling for a National Brain Tumour Strategy.
One of the 34 was Simon Cromack, who was diagnosed with a glioblastoma late last year and is currently undergoing treatment. Attending with Simon was his daughter Ella, brother Jason and his wife Christine. Ella shared her thoughts on why a National Brain Tumour Strategy is a no brainer.
My no brainer is better support – for both the people that have the diagnosis, but also their family and friends.
Ella
Simon’s story
Simon, from Ashampstead in Berkshire, a professional event manager, caterer and former pub landlord, was diagnosed with a glioblastoma brain tumour in November last year, after becoming clumsy and disorientated. Glioblastomas are the most aggressive form of brain tumour in adults with an average survival time of around 12-18 months following diagnosis.
On 12th January, Simon had successful surgery at Oxford’s John Radcliffe Hospital. Surgeons were able to remove more of the tumour than they thought would be possible, in an operation that lasted four hours, and Simon is currently undergoing radiotherapy and chemotherapy.
Simon with wife Steff
Fundraising – to buy time
Inspired by his teenage daughters, Ella and Nelle, Simon is fundraising for treatment he hopes will prolong his life. Simon is researching treatments that are not currently available on the NHS, and anticipates he may also need to go abroad for treatment.
His first goal is to live long enough to see Ella, 18, a professional rugby player, achieve her dream of winning her first senior cap for England Women’s team, the Red Roses.
Ella, who plays at fly-half for Harlequins, is a rising star of English rugby, having started out at Newbury Rugby Club, where her father helped out with coaching. She is well on the way to achieving her goal, having spent time with the Red Roses squad at a 3 day training camp in January.
The family’s fundraising appeal, Give Simon Time, has raised more than £200,000 in just a few weeks!
Simon said: “As a family, we have been truly humbled by the support we have been shown. The generosity and kindness from people donating has been out of this world.
“The treatment I’m looking to have post-op is not cheap. But there’s so much success being spoken about, we’ve got to go for it. The support we have been given is going to buy us time.
“There’s lots that we want to see the girls do as they grow up, and I also want to do my bit to raise awareness about brain tumours and their treatments. I promise I will do all I can to kick this into touch, and we are going to beat it together.”
Supporting our call for a National Brain Tumour Strategy
Ella, 18, attended our campaign launch at Westminster with her father, where she shared her own personal “no brainer”:
“My no brainer is better support – for both the people that have the diagnosis, but also their family and friends. Obviously, mentally, it’s something that life never really kind of prepares you for. It’s pretty surreal to hear one of these diagnoses – especially for my dad, someone that obviously is very close to my heart, and I love a lot.
“So, better support for both the people with the diagnosis, and their family and friends.”
What would a National Brain Tumour Strategy offer?
We want to see dedicated action across the whole care pathway for brain tumours: diagnosis, treatment, aftercare and research.
The Government needs to commit to:
The development of a new optimal diagnostic pathway across all four devolved nations, ensuring everyone receives a fast diagnosis of a brain tumour.
Every brain tumour patient and their family having good access to wraparound support, meeting all of their collective needs.
Every brain tumour patient being offered the chance to participate in clinical trials.
Research into brain tumours recognised as a clinical priority alongside a strategic plan for adequately resourcing and funding for discovery, translational and clinical research.
Sign our open letter today!
A strategy that improves diagnosis, treatment, care, and research? We think having one is a No Brainer.
If you agree, you can help us convince the Government by signing our open letter.
We are going to submit our open letter once Parliament resumes after its Easter break. There’s still time to sign before we close it on April 15th.
There should be no more waiting for change. So, please sign it and share it today!
