Petitions to Westminster and Holyrood calling for better services for Autonomic Dysfunction and PoTS

Summary

• Petitions are currently before both Westminster and Holyrood calling for improved services for Autonomic Dysfunction and Postural Tachycardia Syndrome (PoTS), which are important for many ME, CFS, and Long Covid patients.
• The Westminster petition calls for funding to improve services for PoTS, aiming for 10,000 signatures by July 30th to prompt a government response.
• The Holyrood petition seeks better specialist services for autonomic dysfunction and is under review by the Scottish Parliament’s Petitions Committee.

There are petitions currently before both Westminster and Holyrood for improving services for Autonomic Dysfunction and Postural Tachycardia Syndrome (PoTS). Supporting these petitions is certainly in the interests of many or most ME, CFS and Long Covid patients. PoTS and related Autonomic Dysfunction issues, (and low blood pressure presentations in general), have long been underserved by the NHS.

Forms of Autonomic Dysfunction (or Autonomic Nervous System (ANS) Dysfunction – aka Dysautonomia), are involved in a range of symptoms commonly presented with ME, CFS and Long Covid (as well as a range of other diagnoses).

Orthostatic Intolerance (OI), measured by a drop in blood pressure, and PoTS, measured by an accompanying change to heartrate, are more specific descriptors of issues with ANS control of changes in blood pressure and distribution associated with activities and movement, most noticeably on standing up.

The NASA 10-minute lean test is a readily available diagnostic tool for primary care services. 

Referral to specialist centres offering tilt-table testing is meant to be available for more problematic presentations. But these resources and the skills for using them, are lacking across much of NHS services, despite the large patient numbers needing management and treatment.

The Westminster petition “Postural Tachycardia Syndrome: fund training and facilities” is currently approaching 7,000 signatures, and needs to reach 10,000 (by July 30th) before the government are required to respond.

Holyrood petition PE1952 “Specialist services for patients with autonomic dysfunction” remains open and was last reviewed by the Petitions Committee on 11 December when they undertook some further enquiries, responses to which will prompt the Committee to consider it further. The record of the December petition consideration is available here.

More Information

• The MEA offers a free leaflet on Orthostatic Intolerance
• The MEA Clinical and Research Guide 2022 (The Purple Book) covers the range of ANS considerations under Section 7 : Management (in subsections 7.4.7, 7.5.9 & 7.6.3)