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The Scotland Steering Committee at the Scottish Parliament

Cameron Miller, Head of Policy & Public Affairs, reports from the day’s proceedings

Cameron Miller, Head of Policy & Public Affairs, reports from the day’s proceedings

On Friday 14 September we convened the Scotland Steering Committee at the Scottish Parliament which is a collection of people personally affected, researchers, clinicians and MSPs

This met for the second time, following the first one in April 2018, which was chaired by Miles Briggs MSP and Alexander Stewart MSP.

The atmosphere in the room was electric as this group of dedicated individuals debated how we improve patient experience and diagnose brain tumour patients quicker.

In regards to early diagnosis there was a long discussion on how we engage with primary care professionals to help them spot signs and symptoms earlier, as well empowering the community to feel confident to walk through the door in the first place and ask for a scan.

There are lots of positives to learn from our award-winning HeadSmart campaign and the room was full of praise for this.

People shared their experiences, some were diagnosed in a matter of days and others took over 18 months. The group were united in the objective that the aim should be for a fast and accurate diagnosis for all.

Moving on to Patient Experience it was strongly felt that though there is lots of data out there for ‘cancer’ diagnoses this does not include a large proportion of the brain tumour community, namely low-grade patients who won’t necessarily fall into this category.

With a mixture of those affected by high and low grade in the room, it was agreed this population could not be excluded.

Each patient’s journey is unique and brain tumour patients are people first and foremost, without capturing as much information as possible we will do a disservice to our community and not make the difference we all need to see. It was felt all brain tumour patients deserve access to the best possible treatment and care available.

As the meeting came to a close people stopped to chat and share more in-depth versions of their own stories.

As s mentioned, all patients are unique but what unites this group is the desire and ability to affect real and meaningful change for all brain tumour patients in the long term.

We now have a busy few weeks pulling all of these ideas together into a plan of action.