On Thursday 19th March 3 members of the West of Scotland peer support group were invited to speak to Dr Scott Arthur MP about the rare cancer bill and how this would impact patients in Scotland. Craig, Liz and Carolyn welcomed the opportunity to share their experience about living with neuroendocrine cancer, the challenges they face and also hope for the future. He explained that the bill has now become law after royal assent in England.

The bill will make provision to incentivise research and investment into the treatment of rare types of cancer. In Scotland and Wales this power has been devolved so it’s for local government to decided how to support this. Whilst there are no current commitments to make this law in Scotland, early conversations have been positive with Scott and the Scottish government and we are now reaching out to our local MSP’s to see what long term plans the Scottish government have to support this bill. For those in the devolved nations I would encourage you to raise this and ask your local government to support the rare cancer bill and protect it in law in the devolved nations.

The meeting was very productive and again we were able to speak about the challenges and how government could support Neuroendocrine Cancer UK to make a difference in the lives of patients and families affected by neuroendocrine cancer. Scott agreed to work with the charity on a number of issues that were raised in the meeting.

With the support of Scott, the West of Scotland group are now looking to contact the CEO of Greater Glasgow & Clyde trust to enquire about the plans for a gallium scanner. This was first announced in 2019 and again in 2022 but as yet has not been completed.

We hope to have more news on this front in the future.