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.
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?
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.
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?
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?
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?
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.
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.
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?
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.