Contribution
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.