Postural Tachycardia Syndrome

Tessa Munt Excerpts

Tuesday 14th October 2025 Westminster Hall

[Cat Smith]

Absolutely—I thank my hon. Friend for that intervention, and I very much agree with him.

[Tessa Munt (Wells and Mendip Hills) (LD)]

I thank the hon. Member for allowing me to intervene. My constituent Julie told me about her adult daughter, who has myalgic encephalomyelitis, or ME, and believes she also has PoTS. After struggling to find a specialist, Julie’s daughter finally got a GP referral to a consultant in Bristol, who said that PoTS was “a TikTok fashion” and refused her any testing. She had spent ages travelling and had a long wait, it was quite an effort to get around the building, and she was bed-bound for weeks as a result of the experience. That terribly dismissive approach left her unable to believe that she could try to get any other help, and I understand that that is not uncommon. What steps might be taken to ensure that people with complex, debilitating conditions can access informed and supportive specialist assessments?

[Cat Smith]

I thank the hon. Lady for that intervention; I will address those points in my speech if there are no further interventions. One of the most difficult things for someone with PoTS is to have to sit and stand up repeatedly, so hopefully I will get to the end of my speech.

Colleagues have been really helpful in highlighting that the average time taken for diagnosis is seven years. Indeed, the fight for a diagnosis is one of the first and the longest fights that a sufferer of PoTS will have to go through in order to begin to consider accessing services, although that is a different matter altogether.

During that devastating period, where sufferers have huge uncertainty about whether or not everything is all in their head or they really are fainting and feeling dizzy, they struggle to access any support and are often disbelieved. That leads to many sufferers of PoTS having to drop out of education, losing employment and withdrawing from social settings, which also has an impact on mental health, as hon. Friends have mentioned.

I do not believe that that is because doctors do not care; I think it is because awareness of PoTS remains astonishingly low within the medical profession. Most GPs will never have encountered the term in their training, and even among cardiologists and neurologists expertise in autonomic disorders is scarce. As a result, patients often find themselves being referred to different specialists, bouncing from cardiology through neurology to endocrinology and psychiatry, without there being any one clinician to join up the dots and provide the diagnosis.

The crisis in accessing specialist services has been brutally highlighted this week: we have learned that in London a major teaching hospital clinic has closed its doors to new PoTS patients and a second has reduced its capacity, so that it will see only local patients. All the rejected referrals are now being forwarded to a third London clinic, which is already totally overwhelmed and has a two-year waiting list. Those referrals will put extra pressure on that clinic and leave patients in the south-east without any access whatsoever to healthcare pathways.

This is blatantly a postcode lottery, whereby someone’s access to diagnosis and care depends entirely on where they live. This situation is summed up in an email that I received from a woman last week:

“I would like to note that I got involved with this as I am still unable to get a formal diagnosis of PoTS while suffering the symptoms, as the only specialist we had in Plymouth retired and my GP said they were currently unaware of where to send me for help. Please. I am begging. Please help.”

That is the desperation that many people experience: they can recognise their symptoms, they can use the internet and are quite confident that their symptoms match those of PoTS, but they have no way to get a diagnosis and then to access support.

The crisis has been made even more urgent by a recent surge in PoTS cases associated with long covid. Clinics that were already stretched thin are now being overwhelmed by more referrals, which is adding further pressure to a system that was already struggling to cope pre-covid.

Ultimately, these challenges point to a systemic gap, which is a lack of clinical understanding of the autonomic system. That system sits awkwardly between medical disciplines and is often overlooked in medical education. Until that changes, thousands of people with PoTS will continue to fall through the cracks—dismissed, misdiagnosed and left without the support they need to live well with a complex and chronic condition. The challenges I have described are not simply matters of medical complexity; they are also matters of policy and system design. People with PoTS are not falling through the cracks by accident. They are falling through because the system was never built to recognise or support them.

PoTS predominantly affects women, which contributes significantly to the fact that it takes seven years to be diagnosed. The delay in diagnosis of PoTS is a stark example of a concerning gender health gap in the UK, where many women receive poorer healthcare than men. I welcome the Government’s 10-year plan, but have serious questions for the Minister about its ability to help the PoTS community. It focuses heavily on prevention rather than diagnosis, yet that is not a coherent strategy for chronic multi-system conditions, such as PoTS, which often have genetic or variable causes. The NHS cannot focus just on prevention; there also needs to be adequate access to diagnosis and ongoing aftercare for chronically ill patients, such as those with PoTS, when there is currently no cure. We need an explicit commitment on the Government’s plan to overhaul education and training curricula to create 1,000 new speciality training posts. Although those changes are welcome, will they include dedicated education and training on PoTS for frontline clinicians, and will the new posts include specialists in autonomic disorders?

Finally, with the plan’s commitment to health data research service investment and making wearables standard in chronic care, I ask the Minister whether that investment will include dedicated research into PoTS. Will PoTS patients be explicitly included in the initiative to provide wearables, which are vital for monitoring a heart-rate driven condition? It is clear we need change and a clear co-ordinated strategy that brings together awareness, research, clinical care and social care.

My ask of the Government is clear, but it is fivefold. First, we need national guidelines, ideally from the National Institute for Health and Care Excellence, to provide the evidence-based framework that clinicians, including our overstretched GPs, need to diagnose and treat the condition. Secondly, the Government must require and ensure that commissioning bodies and integrated care boards execute their statutory duties to understand the prevalence of PoTS in their communities and provide for the needs of those patients. Thirdly, we need to ensure that every ICB has a clinical pathway and that all patients requiring secondary care have access to a high-quality service regionally and not just in central London—ultimately, the postcode lottery must end.

Fourthly, we must fully support existing specialist services, which are currently overwhelmed and under threat from closure by hospital management. That includes immediately intervening in the London crisis and protecting every single specialist across the country. Health is devolved in some countries of the United Kingdom, so that is more challenging, but this is a UK-wide issue—although I recognise that the Minister is responsible only for England. Finally, I ask the Government to make PoTS and related disorders a health and social care priority to ensure that affected people have equitable access to the NHS healthcare and social support that they deserve.

We have an opportunity to fix a long-standing wrong. We must not allow the thousands suffering with PoTS to remain invisible any longer. I thank hon. Members for coming out in numbers that I did not expect to support this 30-minute Westminster Hall debate; I hope that demonstrates to the Minister the strength of feeling across the country. All our constituencies have many people suffering from PoTS who are struggling to get diagnoses or to access services, and ICBs are letting down people with PoTS right across these islands. I urge the Minister to use this opportunity to take decisive action and set out how the Government are going to take people with PoTS seriously and ensure that they are no longer invisible.