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Raising the profile of brain tumours with the Scottish Government

As a key member of the LSCT, we met with the Scottish Government’s Cancer Policy Team for a virtual roundtable on Monday 6 July

As a key member of the LSCT, we met with the Scottish Government’s Cancer Policy Team for a virtual roundtable on Monday 6 July to begin this dialogue.

We were pleased to share the expertise and experience of brain tumour patients and clinicians in Scotland and are enormously grateful for our community in Scotland who are empowered to share in this forum, to drive the change we know is so urgently needed for brain tumour patients in Scotland.

It was acknowledged by all parties how different the context and environment has changed since the roundtable last convened in February It is now vital to consider approaches in the present environment and through the next cancer strategy, to ensure we don’t return to the way things were and patients with LSCs aren’t left behind..

At The Brain Tumour Charity, our community are unwaveringly front and centre of all decisions we make, in Scotland and across the UK.

Every day we are inspired by what our community achieves and this roundtable was no different. It was a privilege to hear from Heather Dearie, from Ayrshire, who bravely shared her experience of being diagnosed with a brain tumour.

Heather described the impact the delayed diagnosis of her brain tumour had on her, allowing it to grow so that surgery was more complex and invasive and resulted in part facial paralysis, deafness in one ear and the need for multiple reconstructive surgeries.

Reflecting on the meeting, Heather said: Sharing my story is always a bit nerve wracking especially with people I’ve never met before but it’s so important to have a personal perspective to back up the statistics because actually speaking to someone who has experienced a brain tumour is so much more powerful.

“The meeting was promising, everyone was so engaged and it’s great to see the charity involvement with the Scottish Government so hopefully steps will be taken for earlier diagnosis in the near future”

It was refreshing to hear Government’s honesty, recognising their attentions had been diverted during this time and that having this conversation was important for them to regain perspective.

Gregor McNie, Head of Cancer Policy for Scottish Government, made the concluding remark ‘keep on us’. And that is exactly what we will do. Brain tumours have not paused during the pandemic, but neither have we.

We will continue to raise the profile of brain tumours within the Scottish Government, in dialogue with the LSCT and directly, with patient-experience and our community at the centre.

The Scottish Government and NHS Scotland have risen to the very significant challenges brought by the COVID-19 pandemic, showing resolve and flexibility, cooperation and grace.

It is now time, we see those efforts put towards faster diagnostic routes, optimising patient pathways and ultimately improving survival rates of brain tumours and less survivable cancers.