Progress in Scotland
PoTS UK is often criticised for focusing too heavily on England, but we would like to assure you that our commitment to improving services is equal across the United Kingdom. Much of our recent progress has taken place in Scotland, and this update highlights that work while also recognising the wider UK project.
Earlier developments in Scotland involved the petition initiated by Jane Clarke in July 2022, calling on the Scottish Parliament to improve services for people with dysautonomia. Chair of PoTS UK, Dr Lesley Kavi, worked closely with Jane and Heart Stroke Scotland to challenge the Scottish Government and NHS Scotland’s false claims that high-quality services and national guidelines were already in place. All responses can be found here.
Despite the petition being formally terminated at the end of 2025, on the grounds that sufficient progress had been made, PoTS UK remains clear that dedicated services for PoTS are still lacking, and we continue to lobby for improvements.
Building on the momentum of our parliamentary work in 2025, PoTS UK is now funding a UK-wide project led by Louise Gordon. This work involves writing to all Integrated Care Boards and Health Boards across the UK to hold them accountable for the absence of dedicated PoTS services and care pathways. The project draws on two significant bodies of evidence:
- Our Freedom of Information requests, which revealed widespread gaps in service provision, care pathways, and knowledge of the prevalence of PoTS in each ICB and Health Board.
- Our Access to Services survey, which highlighted the devastating impact of these gaps on people living with PoTS.
Together, these findings provide irrefutable evidence of the urgent need for change.
The project started in Scotland, then moved to Wales, and will continue across the rest of the UK in the coming months. Even within a short timeframe, we are seeing encouraging signs of progress in Scotland. Discussions surrounding PoTS within both the Scottish Government and NHS Scotland have increased, and we believe this shift is closely linked to our recent lobbying.
This increased engagement led to a meeting with the First Minister of Scotland, John Swinney, on Friday 13th February. Dr Lesley Kavi travelled to Scotland for this important meeting and was joined by Louise Gordon. Louise tells us more about the meeting below:
“The First Minister, John Swinney, acknowledged the significant challenges faced by PoTS patients and expressed concern about the ongoing difficulties in accessing appropriate healthcare for PoTS in Scotland. We are encouraged by his commitment to raise the lack of PoTS care with both NHS Tayside and the Scottish Government. This is an important step towards equitable care for PoTS patients in Scotland.”
As health is a devolved matter, our work in Scotland involves close engagement with Members of the Scottish Parliament (MSPs) and relevant Scottish Government officials. A similar approach is being taken in Wales and will be mirrored across the rest of the UK as the project progresses. We look forward to further discussions with both new and returning representatives after the upcoming elections.
While Scotland has been the starting point, and where we are already seeing noticeable progress, the same commitment applies across the UK. PoTS UK remains dedicated to ensuring that people with PoTS receive equitable care no matter where they live in the UK.