Patients with PoTS 'heartbroken' after North Yorkshire NHS axes treatment

Patients with a rare syndrome which can leave them bed-ridden say they have been left "heartbroken" after a decision to withdraw NHS treatment.

Dozens of people with postural tachycardia syndrome (PoTS) have been told by York and Scarborough Teaching Hospitals NHS Trust that they will no longer receive saline fluid infusions.

The treatment helps to ease the symptoms of the condition, which causes an abnormal increase in heart rate when getting up from sitting or lying down.

Danielle Hughes-Francis, from Catterick, North Yorkshire, faints up to eight times a day because of PoTS.

The 38-year-old said saline fluid infusions had enabled her to be a "mother again" to her four children.

She said: "It was massive. I was actually able to do the school run and I sobbed. My daughter came out of school and was like 'mummy's walking'."

Mum Danielle Hughes-Francis said the treatment meant she could be a mother to her children.

She said she had become largely confined to her bedroom following the decision to axe the treatment.

"I'm just heartbroken to have something that's been giving me my life back, taken away," she said. "I just can't comprehend why that is ok.

"To take something away that's helping, not just me but so many people, it's just cruel. Everyone from the hospital is so much worse now, it's really sad."

What is PoTS?

Postural tachycardia syndrome, also known as postural orthostatic tachycardia syndrome, is a condition which causes an abnormal increase in your heart rate after sitting up or standing up.

The most common symptoms are feeling lightheaded or dizzy, palpitations and fatigue.

PoTS is caused by a problem in the autonomic nervous system, the body’s unconscious control system in charge of important functions such as heart rate and breathing. 

It is not yet known why this part of the nervous system doesn’t work the way it should in people with PoTS.  

Clare Clayton, from Sebly, said she was "devastated" when she was told her daughter Hannah would no longer be able to receive the treatment.

She said saline fluid infusions had helped to ease her 24-year-old daughter's symptoms of brain fog, which causes her to become so confused that on occasions she is unable to recognise her mother.

"It's horrible to tell your child that the thing that helps them and makes them feel better is being taken away. I'm absolutely devastated "

Clare Clayton, from Sebly, said she was "devastated" when she found out the drug was being withdrawn.

Patients have been told they can pay up to £600 a week to receive the drug privately.

A spokesperson for York and Scarborough Teaching Hospitals NHS Trust said: "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 intravenous 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."

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