The Situation for PANS families in Scotland
Accessing treatment through the NHS in Scotland can be difficult, as there are no UK clinical guidelines for PANS or PANDAS, however these are under development through the work of our friends and colleagues at PANS PANDAS UK, and the PANS PANDAS Steering Group, and there is an interim statement in place to guide clinicians when faced with a patient presenting with symptoms of the conditions.
Families in Scotland not only face challenges in accessing treatment, but due to the lack of knowledge and understanding of the conditions across health, education and social care, there is little support for them in managing symptoms.
PANS+ Scotland has been formed to help children, young people and adults gain the support they need across health, education and social care in Scotland. It goes without saying that the priority in supporting those affected by PANS or PANDAS is clear clinical guidelines, and that is going through a formal and robust process which takes time. In the mean-time. but what we can do is work towards those affected being supported in the best possible way, and pave the way for action within the relevant organisations and authorities for when the guidelines are published.
Our Trustees
Gillian Mathewson
Founder & CHAIR OF TRUSTEES
Gillian has a wide range of experience from Project Management, Software Engineering, and being a Principal Teacher of Maths. She has also been the Chair of Trustees of an Early Years charity near her home in Aberdeenshire. More recently, Gillian has been working with the UK PANS PANDAS Charity as a volunteer Representative for Scotland. She is a parent with lived experience, and determined to ensure that voice and experience of those with PANS and PANDAS is heard in Scotland.
Dr Ailsa Snaith
TRUSTEE
Ailsa has 30 years of experience working as a scientist, doctor and in management roles across public services, academia and industry. As a neuroscientist working with research teams on a number of chronic conditions, including PANS PANDAS, Ailsa is passionate about supporting the affected community. Her goal is to ensure research into PANS PANDAS is prioritised with the aim of developing treatments that provide meaningful change for individuals and their families.
Helena Gray-Martin
TRUSTEE
Helena has a lot of experience in the third sector, most recently supporting carers as well as a career in politics where she has worked for Scottish MP’s as a caseworker. She has also been an elected member for North Lanarkshire Council since October 2024. She is also a parent with experience and has been a passionate advocate and campaigner raising awareness for PANS and PANDAS since 2022.
Our Vision
The rights of all persons with PANS and other immune-mediated neuropsychiatric conditions are fully realised.
Our Values
- Person-centred
- As PANS is such a fluctuating condition, and those affected have a unique range of symptoms, we believe a person-centred approach is the right way to work with them. This also applies to families, and professionals, and we will endeavour to meet the needs of everyone we work with.
- Sustainable
- We are sharing all of our information online, and encourage everyone who uses our resources to only print what is necessary.
- We are committed to working locally where we can, and will seek to use the services of local business over large multinationals where we can.
- Anonymity
- We believe that it should not be necessary for those affected by PANS to publicly share their trauma in order to get support. It is important to get stories out there – but not at the cost of a child or family’s privacy.
- All stories gathered will follow GDPR regulations to ensure data security, and will be anonymised with names and locations removed. We also require young people of 12 and over to explicitly give permission for their story to be used, and for children under 12, we ask parents and carers to discuss the fact that they are sharing with their child, and where appropriate receive consent.
- Trusted source
- All information that we used will come from trusted sources, such as medical papers, or other organisations with the same values. We will also share the lived experience of those impacted by PANS.