Westminster Hall debates are often used to shine a light on issues neglected by the main Chamber. On Tuesday, we did just that, holding a vital debate on Postural Orthostatic Tachycardia Syndrome, or PoTS. While the debate lasted only half an hour, the cross-party attendance and the sheer force of the patient testimony it represented sent a powerful message to the Government: this is a major, yet invisible, public health crisis that can no longer be dismissed.
For those unfamiliar, PoTS is a chronic neurological condition caused by a malfunction of the Autonomic Nervous System—the body’s ‘autopilot.’ When a person with PoTS stands up, their heart rate increases excessively and rapidly (tachycardia) to compensate for blood pooling in the lower body. For me, and for the estimated four in every 2,000 people living with this condition, the daily reality is far more debilitating than ‘just’ a fast pulse. It means crushing fatigue, severe “brain fog,” chronic pain, and syncope (fainting). Everyday tasks like showering, cooking, or walking to the corner shop become monumental, meticulously planned expeditions requiring immense physical and mental willpower.
My own diagnosis came years before being elected as an MP and I feel fortunate that my condition is well managed with medication and lifestyle changes, and I have my own coping mechanisms. But I know that for so many others they are still fighting for that.
The current average time to diagnosis for PoTS stands at a shocking seven years. This is not just a statistical failing; it is seven years of a person’s life lost to misdiagnosis, often being told their symptoms are “just anxiety” or “in their head.” This lengthy delay is a stark indictment of the deep-seated gender health gap within our NHS, given that PoTS predominantly affects young women. As the national charity PoTS UK found, 50% of respondents to their survey reported being misdiagnosed with a mental health condition before receiving their proper diagnosis. Dismissed, disbelieved, and often disabled—that is the experience for too many.
This is why I was so heartened by the turnout in Westminster Hall. The room was full, demonstrating the strength of feeling in every corner of the United Kingdom. Colleagues shared powerful constituent examples of children missing entire years of school and adults losing their careers, all due to a lack of specialist support in their local Integrated Care Boards (ICBs).
I am grateful for the constructive tone of Ashley Dalton the Minister’s response. She acknowledged that the long and arduous path to diagnosis is rooted in a lack of clear, actionable national guidance. Crucially, the Minister confirmed that Integrated Care Boards have a statutory duty to plan and deliver health services, including specialist care for long-term, complex conditions like PoTS. The message was clear: where ICBs are failing, NHS England is expected to use its enforcement powers to demand assurance and rectification. This public commitment is a welcome starting point, providing a clear benchmark against which we can now hold both NHS England and local commissioners to account.
However, words must translate into action. While the Minister rightly pointed to existing NICE clinical knowledge summaries defining PoTS, the reality is that the guidance is not being implemented on the ground. We have recently heard of specialist clinics closing their doors to new patients or restricting their capacity. This crisis of service provision directly contradicts the Minister’s stated expectations.
Moving forward, Parliament must ensure that three key demands are met: firstly, the Department of Health and Social Care must require ICBs to conduct proper prevalence studies to understand the true number of PoTS patients in their areas and commission appropriate specialist services. Secondly, we need significant investment from the National Institute for Health and Care Research (NIHR) to fund systematic, robust studies into effective treatments. I was pleased to hear the Minister appeal for researchers to bring forward PoTS-related proposals, but we must ensure the funding is readily available to support this life-changing work.
The debate on Postural Orthostatic Tachycardia Syndrome was a massive step in granting this chronic, debilitating condition the parliamentary visibility it deserves. The hundreds of thousands of people struggling daily with PoTS, Long Covid, and ME/CFS deserve a healthcare system that is built to recognise and support them. I look forward to working with my colleagues, the Minister, and patient groups like PoTS UK to ensure the promises made in Westminster Hall become a reality in every community across the country.
The Fight for Visibility: Why PoTS Can’t Be Ignored Any Longer
