Yorkshire woman on what life is like two months after the NHS withdrew her treatment

PoTS is when someone’s heart rate increases very quickly after getting up from sitting or lying down, according to the NHS, and symptoms include dizziness, fainting, heart palpitations, shortness of breath, shaking and sweating. These symptoms eased for Miss Clayton, 24, for 12 months when she was receiving saline fluid infusions.

But on July 2, these infusions that eased the brain fog PoTS brings on, were withdrawn by the NHS.

Lying in bed, as she does for most of her days due to the fatigue PoTS causes, Miss Clayton spoke out about how she is feeling almost two months on.

“I was having treatment for one of my conditions called PoTS,” she said. “I was getting saline infusions twice a week and that was stopped. Now I’m all tired and my brain doesn’t work as well.”

Miss Clayton said her brain “worked a lot better” while having saline infusions and was able to pursue hobbies that distracted her from the effects of the condition.

“I was studying Japanese before when I was on the treatment, but I had to stop that because I can’t process it,” she said. “I wanted to keep going but I couldn’t. There’s a lot of craft and art hobbies I can’t do anymore because I can’t concentrate or I’m too tired. I’m just not able to do the things that I want to do. The crafting keeps me busy and keeps me happy but I can’t do it as much now.”

Not being able to study Japanese, practice art or even play computer games because PoTS makes it incredibly difficult to concentrate has affected Miss Clayton’s mental health.

“I’ve had to up my antidepressants and I’m having more bad days now,” she said. “It’s harder to cope, but it wasn’t before. I’ve had depression before but it was very well controlled when I was on infusions and now I’m not everything is harder to deal with.”

Miss Clayton is still coming to terms with the decision to withdraw the treatment by the York and Scarborough Teaching Hospitals NHS Foundation Trust’s Drug and Therapeutics Committee.

“They just decided it didn’t work without asking any of us,” she said. “If it’s cheap, why can’t we have them? What’s the problem? Why can’t you do a clinical trial?”

York and Scarborough Teaching Hospitals NHS Foundation Trust did not respond to a request for comment.

The Trust’s latest statement on the matter read: “The trust has finite capacity and routinely must prioritise treatments, both for symptom relief and with curative intent, for patients with a wide range of conditions. We have carefully considered the clinical rationale for IV fluids for symptom relief for patients suffering from PoTS.

“The evidence supporting this treatment only does so as a short-term measure and as such the trust has taken the difficult decision that this treatment can no longer be offered. We don’t take these decisions lightly and we are sorry for the inconvenience and distress that this causes for patients.”