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The Scottish Steering Committee: Working towards a faster diagnosis in Scotland

An update on the Scottish Steering Committee’s new objectives and next steps.

Scottish flag flying in the wind, representing wind of change for the Scottish Steering Committee

Last week, members of the Policy and Campaigns team were in Scotland to hold our latest meeting with the Scottish Steering Committee (SSC).

Formed in 2017, the SSC is a voluntary group that is made up of people living with a brain tumour, who have a loved one who’s been personally affected or work in neurology in Scotland. The SSC was established to drive our policy, campaigning and influencing work in Scotland. It now includes 10 members with more looking to join.

Over the past few months, we’ve been working with members to decide on what the SSC’s focus should be for the next two years. The group were united in agreeing that achieving an earlier and faster diagnosis would be their main ambition.

New objectives of the Scottish Steering Committee

To set these new objectives, we had thoughtful and interesting debate. This included members sharing their own experiences related to diagnosis alongside input linked to our Fighting for a Faster Diagnosis report. The SSC also considered the Scottish government’s new cancer strategy. We decided on the following objectives:

  • Raising awareness of the signs and symptoms of brain tumours
  • The establishment of a diagnostic tool
  • The creation of a diagnostic pathway for brain tumours and implementation by NHS Scotland

While these three objectives are undoubtedly ambitious, the SSC is determined to make sure they are accomplished. Judging by the passion and energy of those in the group, it’s hard not to agree it will succeed.

Our next steps

Now that objectives have been agreed and membership established, we decided to create three subgroups aligned with the three objectives.

Each subgroup will map out how the group will achieve its targets, including working out who we need to work with to ensure goals are achieved.

As part of this, we’ve already started planning another drop-in event at the Scottish Parliament building. This will take place during Brain Tumour Awareness Month in March. We’ve also scheduled a number of meetings with MSPs. These will make them aware of the SSC’s new objectives and discuss how they can help.

Linked to the objectives of raising awareness, Less Survivable Cancer Awareness Day is taking place on the 11 January. The Less Survivable Cancer Taskforce, of which we’re a founding member, is hosting a drop in session on the 10 January to recognise this date at the Scottish Parliament building. Members of the SSC alongside other charity advocates will be attending the event. They’ll be making sure MSPs are aware of the difficulties that many of those affected unfortunately face throughout their brain tumour journey.

 “A platform to channel my first-hand experience into meaningful action”

Explaining why he applied to join the SSC, one of our new members, Jonathan O’Reilly, writes:

“In 2019, my life took an unexpected turn when I confronted a benign brain tumour—specifically, an acoustic neuroma. Navigating the complex corridors of the healthcare system in Scotland during my diagnosis was an ordeal marked by uncertainty, delays, and conflicting messages.

This experience ignited a fervent desire within me to champion a cause close to my heart: improving the diagnostic process for those grappling with brain tumours in Scotland.

My personal journey through the Scottish healthcare system highlighted the urgent need for improvement in the diagnostic pathway for brain tumours. No one should endure the anguish of prolonged ambiguity when facing such a serious health challenge.

Joining the SSC was a natural and impassioned choice for me. It offers a platform to channel my first-hand experience into meaningful action. I am committed to leveraging my voice and my story to contribute to the SSC’s mission of transforming the landscape of a brain tumour diagnosis in Scotland.

Together, we can work towards a future where individuals confronting these health challenges receive swift, clear, and compassionate care, sparing them unnecessary distress and fostering a brighter, healthier tomorrow.”

Promising times for the SSC

We’re really grateful to have our new members join the Committee and to have such a powerful, dynamic and exciting SSC.  It’s going to be thrilling to see what’s achieved over the coming months once the subgroups kick off. We’ll be sure to keep the community updated on the progress of the SSC in Scotland.

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