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The Brain Tumour Charity launches Manifesto for Scotland ahead of the Parliamentary elections

The Brain Tumour Charity launches Manifesto for Scotland ahead of the Parliamentary elections.

GLASGOW-based Rhudi Baume-Kennedy is backing The Brain Tumour Charity’s Scottish Manifesto to drive change for everyone affected

Rhudi is sharing his story in support of The Charity’s Scottish Manifesto, launching today (1 April) and urging local MSP candidates to pledge support for those affected by a brain tumour in Scotland.

Over 1,000 people are diagnosed with a brain or central nervous system tumour in Scotland every year, and unfortunately of those who are diagnosed with a malignant brain tumour, more than half do not survive one year.

Early diagnosis remains a unique challenge for brain tumours, with estimates suggesting that up to 64% of patients are diagnosed via an Emergency Department. Recent Public Health Scotland estimates also suggest there may have been nearly a 25% drop in diagnoses from January to August 2020, compared to the same period in 2019, as a result of the COVID-19 pandemic.

In addition, the pandemic has seen many patients face disruption to their care, including to clinics and appointments and treatments such as surgery or chemotherapy. While the NHS took extensive steps to keep cancer services running, The Charity heard that in most areas in Scotland, operations for those living with a low-grade brain tumour were delayed – however the scale of these impacts is not yet known.

The Brain Tumour Charity’s Manifesto is calling for the next Scottish Government to:

  1. Ensure everyone diagnosed can access support from a Clinical Nurse Specialist or key worker, regardless of their tumour type or location in Scotland
     
  2. Drive earlier diagnosis by:
    1. committing to reducing the proportion of brain tumours diagnosed in A&E
    2. piloting a promising new blood test – developed by researchers at the University of Strathclyde and the University of Edinburgh – in primary care across Scotland as soon as possible, to explore its potential to triage those with possible symptoms
       
  3. Establish the extent of any emerging backlog of brain tumour surgeries and scans due to the pandemic, and set out a clear plan to ensure everyone affected by a brain tumour gets the diagnosis, treatment and support they need as soon as possible
     
  4. Accelerate access to real-world data for Scottish brain tumour patients, cancer researchers and charities, including through BRIAN, The Brain Tumour Charity’s patient-led app
     

Rhudi was diagnosed with a ganglioglioma (grade 1) brain tumour in the posterior fossa are of his brain in 2014.

Rhudi said: “I am adding my voice to The Brain Tumour Charity’s call… because when I was 12, I started getting seriously painful headaches.

“I went to about five or six health professionals but all of them told me they were just caused by migraines. Eventually my headaches became so bad that I was not able to sleep at night, throwing up in the morning and having bad nose bleeds.

“I visited an out-of-hours surgery in this state but was still turned away and diagnosed with migraines. My Dad took me to A and E in Glasgow and we basically had to beg to get a scan. When they reluctantly gave me one, the doctor came back half an hour later and informed me that they had found a tennis-ball sized tumour on my cerebellum.

“The diagnosis process was not good enough and I almost paid with a seizure or worse, my life.
 “

“Thankfully, I am now perfectly healthy and studying Economics and Philosophy in my second year at St. Andrews University. It scares me to think that my life could have been cut short just because health professionals are unwilling to consider the possibility of a brain tumour.”

Alice Russell, Scotland Development Manager at The Brian Tumour Charity, said: Brain tumours still kill more children and adults under 40 than any other cancer in the UK. Of those that do survive, quality of life for many is severely impaired and late effects are heart-breaking for far too many families.

 

“This urgently needs to change. After speaking to our community in Scotland, we've developed this manifesto to lay out the action the next Scottish Government needs to take to help deliver long-awaited progress towards a world where brain tumours are defeated.

 

“For everyone affected by a brain tumour, we urgently need the next Government to act to improve access to nurse specialists and key workers, drive earlier diagnosis, address any backlog in brain tumour surgeries and scans, and accelerate access to real-world data.”
 

The Brain Tumour Charity is the UK’s largest dedicated brain tumour charity, committed to fighting brain tumours on all fronts. 

The organisation funds pioneering research to increase survival and improve treatment options, as well as raising awareness of the symptoms and effects of brain tumours to bring about earlier diagnosis. 

The Charity also provides support for everyone affected so that they can live as full a life as possible, with the best quality of life.

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