Answering Your Questions
We are often asked the following questions so we thought it would be good to share our answers with you.
What do you do as an organisation to help people with PoTS?
We aim to educate, support and raise awareness to improve the lives of those with PoTS.
We work with healthcare professionals and other charities in the UK and abroad, and advocate for our members by seeking better NHS services, more research, and targeted treatments for people with PoTS.
We run Online Peer Support Groups at least twice a week throughout the year that give people with PoTS the opportunity to talk to others who understand what they are going through.
We have a team of dedicated nurses who answer numerous emails each week, providing support and advice.
Our website provides information on managing PoTS symptoms, exercise, pregnancy, help for those in education, medical advice, where to go for additional support, travel advice and so much more.
We also have a list of NHS clinics who see patients with PoTS.
What are some common misconceptions that people think about PoTS?
That PoTS only affects women.
That due to the vast array of symptoms people are told that it is all in their head or they are suffering from anxiety.
That because people with PoTS often look fine on the outside then they are! People think ‘it can’t be that bad’.
What inspired you to work for PoTS UK?
I knew nothing about PoTS when I joined (in fact I hadn’t even heard of it!) and the more I heard about the condition, the more I wanted to do something to help raise awareness. The PoTS UK team of staff, trustees and volunteers are lovely people to work with, full of inspiration, support for each other and overall compassion. This is a condition that needs to be recognised and understood.
What are the missions and goals for PoTS UK?
Our mission is to provide accessible evidence, informed support, education and awareness for our growing community. To optimise the health and quality of life of everyone impacted by PoTS.
Our goals are to ensure that PoTS is universally known, to promote fair and equitable access to healthcare, facilitate ongoing advancement of our understanding of the condition and its management of PoTS, to provide trusted and evidenced informed resources, to be more inclusive, sustainable, and connected, lead the change for a compassionate and open mindset and to continue collaborating with others who share our ambitions.
How does PoTS UK support individuals and their families?
We support them through our website, social media, our Online Peer Support Groups, answering emails and campaigning for better services and healthcare.
How can someone get involved or support your work?
We have a dedicated team of volunteers and are always keen to recruit new volunteers who have the qualities and understanding required to facilitate Peer Support Groups.
People support our work through fundraising, donations, raising awareness, completing our surveys, supporting each other via our social media and advocating for better services.
Are there any challenges that PoTS UK has faced? If so, how have you overcome them?
The biggest challenge is lack of healthcare services and PoTS specialists, resulting in long delays to diagnosis and misdiagnosis.
Also lack of information and support in schools/colleges/universities and the workplace.
We are constantly striving to raise awareness, fighting for recognition and better healthcare services.
What is the most rewarding part of working for PoTS UK?
That I am supporting a charity that is working hard to make people aware of this devastating condition. When we get positive feedback and gratitude for all that we do makes it all worthwhile. It is also really rewarding working with such great volunteers who struggle on a daily basis with their/or family members PoTS but are always so positive and uplifting.