Cameron Miller, Head of Policy & Public Affairs, outlines the progress made
Yesterday, we held a roundtable discussion in the Scottish Parliament on brain tumours. This was Chaired by Miles Briggs MSP, Chair of the Cross Party Group on Cancer.
Alexander Stewart MSP, who had organised for there to be a debate in Scottish Parliament in December after hearing the story of his constituent Shona Richardson, opened the discussion by explaining that brain tumours had languished too far behind other diseases in the progress being made and that he would continue to help those around the table make this change.
Miles and Alexander have both worked hard to help us in the cause of promoting brain tumours in Scotland. They are both dedicated and hard-working MSPs and they clearly have a thirst to understand the issue, to then help us address the issues that are important.
If proof was needed of their dedication, the Scottish Parliament wasn't actually sitting yesterday, they both came back especially for this roundtable event.
Your voice was heard
We heard from many patients and carers. They were, naturally, very emotional as people spoke of the frustration of not being diagnosed earlier, despite seeing excellent healthcare professionals, who were just not aware of brain tumours and their symptoms.
This experience taints their view of healthcare going forwards, as it always leaves a big 'what if' question 'what if they had been diagnosed earlier would the outcome have been different'?
We then heard from healthcare professionals too, who have experienced this from the other side, trying to diagnose brain tumour patients.
They acknowledged that the improvements in diagnostics have not improved over the years, and hundreds of people will be sent for scans to detect or rule out a brain tumour, and be told they don't have one, and so spoke of a greater need to identify the right patients to send for scans.
They also discussed the very valid point of just how difficult it is to diagnose a brain tumour.
One in twenty (5%) of GP appointments are taken up with headaches and 40% of the UK population suffers with them, we heard, and yet GPs will only see a handful of brain tumour patients in their life.
The second half of the discussion was about the patient experience after diagnosis, and had some equally emotional and compelling stories.
We heard from those who have felt alone throughout the whole process, with little support or acknowledgement of how their life has been turned upside down.
We also heard from those who had fantastic treatment, but once it was done had no outlet within which to talk, seriously impacting on their emotional well-being and mental health.
They also spoke of the shock of how news was delivered, with one shocking story of a serious health condition coming through the post for one gentleman.
Healthcare professionals in the room included Dr Paul Brennan, from Edinburgh University, who is leading our early diagnosis research.
They all spoke of the difficulty in dealing with patients at times with the resources at their disposal. The focus inevitably is shifted to those most in need as they constantly fight fires and handle those where they can seemingly make the biggest difference.
The next step
The great thing about this roundtable was the consensus in the room. Patients, carers, nurses, doctors, researchers and politicians all acknowledged the problems and genuinely want to work together to help bring about the change that we all want to see.
There is a famous saying from anthropologist Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has."
It would be easy for this to be the end of the change, rather than the beginning of something.
We have had a nice event in parliament and got a lovely photo, but this needs to be the next stepping stone in that journey to change.
We will now build a steering group that will oversee the actions that come out of this, bringing together the skills, experience and expertise of all those around the table.
It was great to see yesterday how those varied experiences really helped conjure up new ideas and ways of thinking. The steering group will bring together a core group of experience, but it will also be its job to communicate what is going on and consult with the wider community when necessary.
Once the 'white paper' is written (it will inform readers about the issues and make a series of proposals for how to tackle the problems), we will know more of what we need. We will beginning seeking people in the next couple of weeks.
So, there are plenty more opportunities to return to the wonderful Scottish Parliament.