The Origins of PoTS UK
In January 2010 Susan Whitfield set up a Facebook group to bring together people throughout the United Kingdom with PoTS to provide mutual support.
While in hospital Sue was introduced to Lorna Nicholson, and together they hatched a plan to create a website as a resource for people with PoTS and medical professionals. With support from Sue and the Cardiology team in Sheffield, Lorna gathered people from various backgrounds and skills to form a team of keen and willing volunteers.
PoTS UK website
The website was launched in September 2010.
Since then, it has been upgraded, expanded, and refined several times.
PoTS UK as a trusted source of information
In February 2013 PoTS UK became a member of the Information Standard and in 2020 became members of the Patient Information Forum and were awarded the PIF Tick quality mark for healthcare education. This means that content is evidence based, reviewed by patients and approved by experts in the field.
Our website receives up to 50,000 visits per month from viewers all over the world.
PoTS UK, the charity
In October 2011, PoTS UK became a small charity and registered with HMRC for gift aid purposes.
In January 2015, PoTS UK became a charity fully registered with the Charity Commission of England and Wales
PoTS UK’s growth
Our people
Our team of trustees grew from 2 in 2013 (Lorna and Lesley Kavi, the current chair of the trustee board) to our current team of 5. We are fortunate to have a trustee board with a variety of skills including medical, event management and finance. All trustees are affected by PoTS, either as patients or carers.
We also have a growing team of medical advisors, patrons and supporters.
We would be unable to function without the support of our ever-expanding team of volunteers. In addition to the trustees there are currently over 30 volunteers whose dedication and commitment allow us to achieve all that we do today.
Thanks to the generous donations and fundraising projects of our supporters, we were able to take on our first employee in 2019. Our admin team now consists of 3 part time employees as of May 2024.
In 2022, a team of nurses with a special interest in PoTS volunteered to answer patient enquiries on a rotational basis.
Advisory role
In more recent years, as our reputation has grown, we have been invited by NHS England and a variety of hospital trustees, GP groups, universities and businesses to provide information and training about PoTS.
PoTS UK’s connections
Since its origins as a Facebook page, PoTS UK now also connects with patients, carers, friends, family, healthcare professionals, teachers and many others through a variety of media including Twitter, Instagram, LinkedIn, YouTube, TikTok and email.
Our friends
We work closely with a number of associated charities including those that support people with hypermobility syndromes, MCAs and ME/CFS.
PoTS UK achievements
- We are now recognised as the main UK PoTS charity by patients and healthcare professionals alike.
- Raising awareness – though educational events, newspaper articles, medical journal publications, radio, social media and more, we have strived to raise awareness of PoTS amongst healthcare professionals and the general public
- We helped to develop the first UK PoTS medical textbook
- We host UK PoTS Masterclasses approximately every 2 years, inviting expert speakers from all over the world. Our last masterclass (in person and virtual) attracted over 1200 registrations.
- Research – we have funded, facilitated, published and presented many research projects
- Medical guideline advisory roles
- Patient peer support groups – these run 2-3 times a week, run by our volunteers to support patients and give them the opportunity to meet others who understand what they are going through
- Weekend patient retreats – to provide a safe and pleasant environment for patients to meet patients and experts, for education and self-care.
- Lobbying- we have lobbied politicians, hospital management and clinicians, DWP for increased recognition and better services for patients.
- We have hosted a programme of webinars and online videos as educational resources for patients, family and healthcare professionals.
Mission, Vision and Values
Our Mission Vision and Values can be found here.