Postural Tachycardia Syndrome

Cat Smith Excerpts

Tuesday 14th October 2025 Westminster Hall

[Cat Smith (Lancaster and Wyre) (Lab)]

I beg to move,

That this House has considered the matter of support for people with postural tachycardia syndrome.

It is a pleasure to see you in the Chair this morning, Sir Desmond. I am grateful for this opportunity to look at a health issue that is often overlooked, misunderstood and under-resourced within our national health service: postural orthostatic tachycardia syndrome, or PoTS for short. It is not a rare disease, yet for too long people living with PoTS have fallen through the cracks of a system that was never designed to recognise or support them. My notes are based on the heartbreaking reality faced by my constituents and the tens of thousands of people across the UK who have PoTS. I must declare, Sir Desmond, that I have had a diagnosis of PoTS since 2012, so some of what I will say is taken from my own experience as well.

[Jim Shannon (Strangford) (DUP)]

I spoke to the hon. Lady beforehand, and she said that whenever I ask for an intervention, she will take it, so I thought I would get it done early. I commend her for her dedication and commitment, which I always admire, and I wish her well in this campaign. Does she agree that the nature of PoTS means that it can be difficult to diagnose, which leaves the sufferer feeling unheard and not believed? Does she believe that enhanced research into diagnostic tools would ensure that people get the support they need to live with PoTS, rather than surviving life with it?

[Cat Smith]

I thank the hon. Gentleman for his intervention; I recognise that a lot of hon. Members are here for this debate, more than I have ever seen for a 30-minute debate before. Hopefully, next time I make an application, I might be granted a bit more time. I am happy to take early interventions from colleagues, if anyone wants to make them.

[Andy McDonald (Middlesbrough and Thornaby East) (Lab)]

My constituent has contacted me about his daughter, who lives with PoTS and faces exhausting weekly travel for costly private IV treatment due to the lack of local NHS provision. They have now found support in York, but it is still far from home. Does my hon. Friend agree that the absence of national clinical guidelines and clear care pathways leaves too many families in that position, and that the Government should do more to ensure consistent and accessible care for people with PoTS, wherever they live?

[Cat Smith]

I agree with my hon. Friend; I will address that point later in my speech.

[Douglas McAllister (West Dunbartonshire) (Lab)]

Health is obviously devolved to Scotland, but this is a UK-wide issue. My constituents Ewan, Robert and Louise are among a group living with PoTS and they too advise of unacceptably lengthy waiting times for a diagnosis—causing many years of untold suffering. Does my hon. Friend agree that greater support for this syndrome is needed right across the UK?

--- Later in debate ---

[Cat Smith]

The lack of services across the UK is part of my speech; I look forward to discussing it.

[Cameron Thomas (Tewkesbury) (LD)]

You are looking as suave as ever, Sir Desmond. On behalf of many of my Gloucestershire residents, I thank the hon. Member for bringing forward this debate. She will know that PoTS UK reports that it takes an average of seven years to get a diagnosis, and that half of those people are initially misdiagnosed with a mental health condition. Considering this additional strain on sufferers and families, will she agree that the Government should focus on improving diagnoses as a priority?

[Cat Smith]

I will address that issue in my speech too.

[Warinder Juss (Wolverhampton West) (Lab)]

I thank my hon. Friend for giving way again. Like others in this room, I have had many constituents ask me to represent them today. One such constituent, Sophie Evans-Carey, has spent the last six months in hospital and just wants to get her life back. Does my hon. Friend agree that we need to increase support and services available for PoTS sufferers? The average time for diagnosis is seven years. We need faster diagnoses and proper funding for treatment to enable people such as Sophie to go back to work, and help the economy in the process.

[Cat Smith]

I thank my hon. Friend for that intervention; I will take another.

[Jim Allister (North Antrim) (TUV)]

I am much obliged to the hon. Lady. On the theme of this being a nationwide problem, in Northern Ireland not only does it take seven years for diagnosis, but we do not, it appears, have a single PoTS specialist, which is aggravating the situation. If the Government are to address this issue, they need to address it on a nationwide basis and they need to give it the urgency and funding that it obviously deserves and that to date has been neglected.

[Cat Smith]

The hon. and learned Gentleman has picked up on a theme later in my speech, which I hope he will enjoy.

[Jim Dickson (Dartford) (Lab)]

A decade ago my constituent Laura Cordell, who has lived with PoTS for 10 years, was rushed to A&E with a dangerously high heart rate. She was later told by a doctor that she had PoTS symptoms, but she was just told to go away and take more salt, with no follow-up or referral. Over the next 10 years she sought help on a number of occasions but was not diagnosed; in the end she had to go private for a diagnosis, which is obviously not an option available to most people. Does my hon. Friend agree that we need a lot more research and greater awareness of PoTS, particularly among frontline medical professionals such as GPs, who are often the first port of call for our constituents?

[Cat Smith]

I very much agree.

[Rachel Taylor (North Warwickshire and Bedworth) (Lab)]

I thank my hon. Friend for raising awareness of this very important condition. It is, as always, an honour to serve under your chairmanship, Sir Desmond. I am here because, like everyone else, I have had several of my constituents raise the problem of diagnosis taking far too long, the crippling impact that this condition can have on their lives and the difficulty that they face in accessing healthcare. As chair of the all-party parliamentary group for sport and physical activity, I particularly want to raise the impact that PoTS has on people’s ability to continue to play the sport that they love. It may be that, because they are not being diagnosed, they think it is something that will impact their ability to continue their ordinary, everyday life. It is not right that diagnosis takes on average seven years. We must put more effort into and more emphasis on diagnosis and treatment.

[Sir Desmond Swayne (in the Chair)]

Order. Interventions should be shorter.

[Cat Smith]

That intervention was an important one; sport was not included in my speech, but as someone who has PoTS and has run three London marathons, I can say that people can have PoTS and be sporty—it is just a lot harder.

[Rachael Maskell (York Central) (Ind)]

I am really grateful for this debate. Dr Gupta is a leading specialist in PoTS but, although he knows the physiological changes that take place and he knows how to treat it, he has been stopped in his practice because we do not have the clinical guidelines in place. The Government must now ensure that that happens, so that he can continue his practice, which he knows has an impact on patients—indeed, they recover well.

[Cat Smith]

Absolutely. Those clinical guidelines need to change, and I will address that later in my speech.

[Lillian Jones (Kilmarnock and Loudoun) (Lab)]

I share my constituents’ concerns about the average time for diagnosis of PoTS; seven years is simply too long, and it is unacceptable—and that is in Scotland too. Given the limited awareness of postural tachycardia syndrome among healthcare professionals, does my hon. Friend agree that the introduction of one dedicated care pathway across all health boards, including the devolved nations, would help to improve early recognition, streamline referrals and ensure that patients receive timely and appropriate care?

[Cat Smith]

I very much agree.

[Laura Kyrke-Smith (Aylesbury) (Lab)]

I am grateful to my hon. Friend for securing this debate. One of my Aylesbury constituents has become a full-time carer for her 25-year-old son, who is affected by PoTS; he developed it at university, had to drop out and now is unable to work. Does my hon. Friend agree that, given that we know that PoTS is most likely to develop in young adulthood, we need a particular focus on that age group as we think about increasing recognition, diagnosis and treatment of PoTS?

[Cat Smith]

I very much agree.

[Adam Jogee (Newcastle-under-Lyme) (Lab)]

I congratulate my hon. Friend on her knee exercises this morning in giving way to us all. May I give voice to my constituent Eva from Newcastle-under-Lyme? She has been in touch with me after I met her at a coffee morning recently. Her concerns are on early diagnosis, access to services and the fact that she is stuck on a waiting list down here in London and has been for a very long time indeed. The situation simply is not good enough, and I look forward to hearing from the Minister what action we will see—and sooner rather than later.

[Cat Smith]

There is a particular crisis in London, which I will address later in my speech and which my hon. Friend might be very interested in.

[Kim Leadbeater (Spen Valley) (Lab)]

I thank my hon. Friend for being so generous with her time in giving way. As we can see from today’s debate, this is not a rare condition. Maybe some people think that it is rare, but it affects many people, including Helen, who lives in Roberttown in my constituency. She was repeatedly misdiagnosed and has faced years of delays and fragmented care. I echo the calls from colleagues for clear NHS pathways, joined-up care and access to specialist support in every region, and that we should not underestimate the impact that PoTS can have on people’s mental health.

[Cat Smith]

Absolutely; that is a very good point. When someone is not believed by medical professionals for so long, it can affect their mental health—I recognise that.

[Sojan Joseph (Ashford) (Lab)]

I thank my hon. Friend for giving way. Some reports suggest that 50% of PoTS cases have been misdiagnosed as mental health conditions, adding pressure on the individuals themselves and on mental health services. Does she agree that there needs to be more support for people with PoTS?

[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.

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

It is a pleasure, as always, to serve under your chairmanship, Sir Desmond. I congratulate my hon. Friend the Member for Lancaster and Wyre (Cat Smith) for bringing forward this important issue.

This place is vastly enriched by our experiences, and it is nothing short of inspiring how my hon. Friend’s diagnosis has led her to become a passionate advocate for the PoTS community, raising awareness and holding the Government to account. I thank her for sharing her story and Elise’s case with me. I assure my hon. Friend and Elise that tackling health inequalities is my No. 1 priority as the Minister for Public Health and Prevention.

I also thank many hon. Members for their interventions and for sharing their constituents’ stories. Given this short debate, there is not time to respond to each intervention—I will not even attempt to do so—but I assure hon. Members that their points have been noted and that their presence today is testament to the importance of the issue for hon. Members on both sides of the House. I recognise that people with PoTS wake up and confront every day through sheer willpower, and that showering, cooking and walking to the corner shop each become small expeditions that need endless rest and planning. We are determined to help improve their lives.

Postural tachycardia syndrome, more commonly known as PoTS, is not a rare condition. It affects around 120,000 people in the UK. It is a debilitating, multi-system disorder that can significantly impact someone’s quality of life. As my hon. Friend the Member for Lancaster and Wyre points out, the path to a PoTS diagnosis is often a long and arduous one, filled with frustration and misdiagnosis as patients fight to be heard. Even after a diagnosis is made, patients may struggle to access the services that they need due to a lack of specialist care and limited understanding among health professionals. That results in long delays in treatment, often leaving those affected unable to work or live their lives.

I turn to the specific issues raised by my hon. Friend, starting with guidance. For too long, patients have faced systemic barriers to care and an unacceptable postcode lottery for support. It cannot be right that in modern Britain, where someone happens to be born determines the care that they receive. She rightly points out that that inequality is rooted in the lack of clear national guidance for healthcare professionals. Without guidance from bodies such as NICE, clinicians often lack the confidence and know-how to identify and manage this complex condition effectively.

There are some reasons for the difficulty in providing such guidance, including the amount of available evidence, the fact that PoTS is often managed with lifestyle changes, and the overlap with other conditions such as long covid and myalgic encephalomyelitis/chronic fatigue syndrome, which can bring similar debilitating symptoms. All those issues can make the development of clearcut guidelines challenging. However, in its clinical knowledge summary on blackouts and syncope, NICE sets out in black and white a clear definition of PoTS with the right tests to diagnose it, and symptom-based management. NICE has also published guidance that mentions PoTS in relation to other conditions, such as its guideline on ME/CFS, which acknowledges the overlap between these syndromes. Several other organisations, including PoTS UK and the international Heart Rhythm Society, provide information too.

Services for long-term conditions such as PoTS are commissioned locally through integrated care boards. That approach gives local clinicians the flexibility that they need to tailor services to the specific needs of their communities. Providing a PoTS specialist service is a fundamental part of the ICBs’ statutory role in planning and delivering health to the people they serve, and when an ICB fails to meet its statutory functions, NHS England has a range of proportionate enforcement powers. Let me be clear: we expect NHS England to hold ICBs to account by demanding that they provide clear assurance on how they are meeting their responsibilities, and where they are failing people with PoTS—let me say this very clearly, publicly, now—we expect them to rectify it.

[Cat Smith]

On the point about ICBs, many have zero options in terms of pathways. What steps will the Minister take to ensure that they are forced to do that by NHS England? I thank her for her comments.

[Ashley Dalton]

I thank my hon. Friend for her intervention. As we know, guidelines are only as strong as the evidence and research that they are based on. We need systematic, robust data to determine which treatments and interventions are most effective.

While we are backing our life sciences sector to come up with tomorrow’s treatments for long-term conditions, we are also directly funding research through the National Institute for Health and Care Research. The NIHR is currently backing a study, known as the LOCOMOTION study, with more than £3 million to examine the connection between long covid and autonomic nervous system disorders, especially PoTS. The NIHR funds research proposals through open competition, based on their scientific quality, value for money and impact on patients. The NIHR welcomes research proposals, and I appeal to any researchers to apply with proposals for PoTS-related research that this Government could fund. We want to see proposals and fund those that can be brought forward. Those researchers’ work could be life-changing for thousands of people across our country.

Locally developed care pathways are clearly important for supporting people with PoTS, because they help to address the condition’s unique challenges.