Postural tachycardia syndrome (PoTS).
Overview
Postural tachycardia syndrome (PoTS) is a condition where the part of the nervous system that automatically controls things like heart rate and blood pressure isn’t working properly.
This means that people’s heart rate increases very quickly after getting up from sitting or lying down, often making people feel dizzy or lightheaded.
It’s not clear what causes PoTS. It can develop suddenly or gradually over time. There’s currently no cure, but it can be managed with lifestyle changes or sometimes treatment with medicines.
Latest position in Devon
Despite a significant review and multiple attempts to commission a Devon-wide PoTS service, it has not been possible to identify local teams with the appropriate breadth of expertise required to effectively support this group of patients. In discussions with partners, it was clear there was no clinician within wider Devon system.
During this extensive piece of work, the local NHS found that individuals are frequently presenting with symptom clusters associated with conditions such as PoTS, Hypermobile Ehlers-Danlos Syndrome (hEDS), and Mast Cell Activation Syndrome (MCAS). There is also growing recognition of a link between these presentations and neurodiversity.
It is recognised that there is currently a gap in Devon for patients with complex, multi-system disease that do not fit in traditional services. Work is therefore currently underway to explore a proposal for a holistic, needs-based service model. This work is progressing as quickly as possible, but the specific timescales are unable to be confirmed at present.
The aim is to design an integrated pathway around patient symptoms and needs, rather than specific condition-based services, ensuring a more inclusive and responsive approach to care. This pathway will subsequently need to be embedded within neighbourhood development plans.
NHS England’s Getting It Right First Time (GIRFT) team has recently worked with PoTS UK to publish updated best practice advice and guidance templates for PoTS.
As part of local Devon communications to primary and secondary care (i.e. GP practices and hospitals), it is important that this national guidance is reviewed carefully and that specialised teams are engaged to ensure consistent messaging.
This helps to ensure that local processes align with the national position and that all clinicians across Devon receive clear and consistent information.
Ehlers-Danlos Syndrome
NHS England commissions diagnostic services for adults and children with complex Ehlers-Danlos (EDS), excluding hypermobile EDS, from highly specialist EDS centres, with some ICBs commissioning services for non-complex EDS.
NHS Devon does not currently commission a specific pathway for secondary care referral of EDS. Individuals are therefore encouraged to speak to their GP practice about their care needs and which services might be appropriate.
A Royal College of GPs EDS Toolkit is available to be used by GPs and primary care to support patients with diagnosis, treatment and support.
Further information and support
Below are links to further national information and support:
