The roundtable event follows a debate on brain tumours in the Scottish Parliament in December 2017
Miles Briggs MSP is to chair a roundtable discussion on brain tumours in the Scottish Parliament on Monday 16 April, bringing together researchers, clinicians, patients and carers with the goal of improving outcomes for brain tumour patients in Scotland.
The discussion will focus on two areas of crucial importance for brain tumour patients: early diagnosis & patient experience.
Expert speakers have been invited to share their knowledge and expertise, whilst patients and carers themselves will be at the heart of the discussion, sharing their experiences.
The event follows a Members’ Business Debate on Brain Tumour Awareness in December 2017, led by Alexander Stewart MSP.
The debate featured spoken contributions from 11 MSPs, and was concluded by the Minister for Public Health, Aileen Campbell MSP, who acknowledged that improvements in brain tumour awareness, patient experience, and research were needed.
Also attending the Roundtable will be 16-year-old Rhudi Baume-Kennedy from Blanefield near Glasgow, who was diagnosed with a large brain tumour in the cerebellum when he was 13 years old. Like many others, Rhudi experienced a confusing and painful journey to diagnosis.
Advocating for early and accurate diagnosis of brain tumours and a supporter of HeadSmart, The Brain Tumour Charity’s symptom awareness campaign, Rhudi will be speaking to the MSPs about his own experience.
Rhudi said: “I spoke to five excellent health professionals over many months before I was first diagnosed in A&E, largely by luck. I know first hand how critical early diagnosis is to the survival and quality of life of those affected by brain tumours.
“In the UK each year, over 500 children and young people will face a brain tumour diagnosis and it’s through the work of The Charity and their drive to promote awareness, that we can improve the outcomes for those affected.
“The Roundtable is a perfect opportunity to combine the ideas of those affected, the researchers, the clinicians and MSPs, who together will make the difference. For once, this is not about funding or money, it is about understanding and awareness.
“If one child is saved through earlier diagnosis then it will be worth it.”
Miles Briggs MSP, who will chair the discussion, said: “ I’m very pleased to be chairing an important meeting on how we can improve diagnosis and patient experience for brain tumour patients in Scotland”.
“Brain tumours are a cancer of unmet need, and by working together we can improve outcomes for those affected.
“I look forward to hearing the experiences of patients and carers, along with the expertise of researchers, clinicians and representatives of The Brain Tumour Charity”.
The key output of the roundtable will be a policy ‘White Paper’, which will summarise the key issues discussed at the event and will provide recommendations to the Scottish Government on how early diagnosis & patient experience can be advanced.
This will form the basis of the work that The Brain Tumour Charity continue to campaign on in Scotland.
“This event offers a unique opportunity for brain tumour patients to share their experiences in the presence of decision makers and leading researchers and clinicians”.
“The Brain Tumour Charity will be calling for greater focus on earlier diagnosis, and for improved patient experience, that is sadly languishing behind other cancers”.
“We have a broad range of patients and carers scheduled to speak at the event, and we want more people to feed into our White Paper by sharing their experiences, either by video or email.”
Cameron Miller, Head of Policy & Public Affairs at The Brain Tumour Charity
Want to contribute to our White Paper?
Improving outcomes for brain tumour patients is a cause of crucial importance to our community. We want to include your experiences to ensure your voice is heard by MSPs, researchers and clinicians.
To get involved, simply share your experiences of diagnosis and treatment of your brain tumour or a brain tumour of a loved one either by email or video:
Upload a short video of you telling us your experiences of diagnosis and treatment either as the patient of on behalf of a loved one and the impact it has had on you and your family.