'Some days I can't even walk upstairs' - the reality of living life with PoTS
PoTS UK is campaigning to MPs with the ambition to improve medical support for the chronic illness, PoTS
Last updated 12 hours ago
A chronic illness charity is campaigning for better care pathways at Westminster for the health condition, Postural Orthostatic Tachycardia Syndrome, better known as PoTS.
The condition takes an average of seven years to diagnose, new research from PoTS UK has found.
Symptoms of PoTS include:
- Dizziness
- Headaches
- Palpitations
- Abdominal Pain
- Nausea
- Diarrhoea
PoTS UK is at Portcullis House in Westminster on Wednesday 12th March, asking more than 600 MPs to join them in setting a clearer care pathway for sufferers.
What's it like living with PoTS?
William Russell, a 16-year-old student and keen pianist from Bury St. Edmunds who has the condition, as well as Ehlers-Danlos Syndrome, said: “It’s affected every part of my life really.
“My studies, my social life, simple activities, and I struggle to get out of bed some mornings.
“Some mornings I can’t even walk up the stairs.”
The condition, affecting the autonomic nervous system, can impact daily life with fainting and heart palpitations listed amongst possible symptoms.
It can range from mild to severe with some patients experiencing stronger symptoms than others.
What are the symptoms of PoTS?
Jo Bullingham, General Manager at PoTS UK, told us more about the condition.
She said: “PoTS is a common, complex and disabling condition that affects both adults and children.
“The chances are that you either will know somebody already who has PoTS, or you will know somebody that has in the future."
She added “The average time to diagnosis is seven years which is absolutely shocking and wrecking lives completely needlessly.”
PoTS mainly affects patients when they are in an upright position and causes a sustained heart rate increase of greater than 30 beats per minute within 10 minutes of standing.
However, the PoTS UK charity say many healthcare professionals are unaware of PoTS and want to increase awareness.
Why is so little known about PoTS?
Today, the PoTS UK charity is urging MPs to write to their Integrated Care Boards (ICBs) or local hospital providers to develop a care pathway for PoTS and ensure high-quality secondary care services are available locally.
As well as this, they are urging MPs to write to the Secretary of State for Health and Social Care, Wes Streeting, to request that he:
- Ensures a secondary care service is available to patients in every region of the UK.
- Asks NHS England to commission national guidelines to improve patient care and their healthcare professionals’ confidence in managing them.
Ms Bullingham said: “The campaign aims to improve services for people living with PoTS and raise crucial awareness.
“We’re really hoping that there’s going to be a good turnout at the MP drop-in session and that the MPs will follow up on the actions that we’ve asked them to do.
“It’s absolutely essential for people with PoTS to have access to PoTS specialists when required and the medical care that they need.
“So many patients are left unable to attend school or work due to their ill health, when we know that accessing the right treatment in a timely fashion, could help them to go on to function so much more and lead really rewarding and purposeful lives."
The group say the talk at Westminster has been successful, with 43 MPs and representatives in attendance.
PoTS community demands action
Scarlett Steer’s training to be a solicitor in Liverpool and says it’s great to have a campaign like this.
She said: “I think it’s great to have those care pathways in place for people who are going through the process.
“I understand for a lot of people it can take quite a while.
“I know for me, I got my diagnosis quite quickly, but the average diagnosis time being seven years, to have nothing in place for that long, that could be quite hard for them.
“I think it’s great for awareness purposes, too.
“I hadn’t heard of the condition before being diagnosed with the condition.”
Link between COVID and PoTS
PoTS UK’s also seeing an increase in cases since COVID with around 10% of people with Long-COVID also having PoTS.
The charity group is holding a petition in hopes to increase knowledge of the condition as well as help to further action their requests to MPs.
Ms Bullingham added: “The GOV.uk petition was organised to highlight the desperate need for better services, and we’re delighted that it’s already achieved over 10,000 signatures.
“Whilst this is absolutely wonderful and we’re really grateful to everyone who has been campaigning to try and get people to sign it, in order for us to be considered for a debate in Parliament, we do need to reach 100,000 signatures.
“We urge everyone to sign the petition and whilst it might not affect your life personally, we really hope that everyone can pull together, play their part, and sign the petition to make a big difference.”
For the link to the PoTS UK petition, click here.
Find out more about the work of PoTS UK
Get more information from Standing Up To PoTS
Rayo Premium