PM urged to intervene over end of York PoTS treatment

Jeanette Hodgson said the condition had "totally changed" her life

The prime minister has been urged to intervene after patients in North Yorkshire were told a treatment for their rare condition was being stopped.

Postural tachycardia syndrome (PoTS) can cause light-headedness, dizziness, palpitations and fatigue.

Patients said receiving the trial saline fluid infusions had improved their quality of life.

The York and Scarborough Teaching Hospitals NHS Trust said there was not enough evidence to continue its use.

Danielle Hughes-Francis, from Catterick, North Yorkshire, said the decision "broke her heart".

The condition means she regularly faints and also gets brain fog and chest pains.

"Whenever I stand up at the moment, if I am going to the toilet I am fainting on the way and on the way back."

The 38-year-old mother of four said within months of beginning the treatment she was able to resume being the mum she was before she was diagnosed with PoTS.

Danielle Hughes-Francis said the treatment mean she was able to resume activities with her children

What is PoTS?

• Postural tachycardia syndrome (PoTS) is when your heart rate increases very quickly after getting up from sitting or lying down

• It can get better with changes to lifestyle, but some people may need treatment with medicines

• Symptoms include dizziness or light-headedness, fainting, noticeable heartbeats, chest pain and shortness of breath

• It can also cause problems with thinking, memory and concentration (brain fog)

• It is not clear what causes postural tachycardia syndrome (PoTS), which can develop suddenly or gradually over time.

Source: NHS ENGLAND

Jeannette Hodgson, from Thorpe Willoughby near Selby, was diagnosed with PoTS in 2021.

"It affects every single part of your body on a day-to-day basis it has totally changed my life," she said.

She was referred for four weeks of the fluid infusions before being told there would be no more.

"It was like winning a big prize, but then it is being taken back off you," she said.

"The people who have made the decision clearly don't understand the condition and don't understand the difference such a simple treatment can make."

Mrs Hughes-Francis said she "sobbed" when she was told the treatment was being stopped.

"I was just absolutely gutted, it had been working so well for us and the future looks very bleak now."

She has contacted her MP, Prime Minister Rishi Sunak, and has started a petition to try and get the trust to change its decision.

The health trust said there was not enough evidence the treatment provides sufficient benefit to patients

Dr Binita Kane is a consultant respiratory physician with an interest in PoTS and said the service at York had been a "shining light".

"It was one of the only places that was treating these patients."

She said they should have been looking at the benefits and rolling it out more widely.

"Stopping the service just feels like going back ten years and now we are starting from scratch again."

A spokesperson for York and Scarborough Teaching Hospitals NHS Foundation Trust said it had "comprehensively reviewed" the evidence for saline fluid infusions.

"There is not enough published evidence that the treatment provides sufficient benefit for patients to justify continued long-term IV treatment.

"We are therefore no longer providing this treatment, which is consistent with other hospitals in the NHS."

The BBC has approached the prime minister's office for comment.