PoTS - FOI Response Register

Postural tachycardia syndrome (PoTS) is a neurovascular condition characterised as an abnormal response by the autonomic nervous system to upright posture. The condition causes affected patients of all ages to experience a range of symptoms requiring extensive clinical investigations involving neurology and cardiology specialties to inform a positive diagnosis. 

1. How many patients are referred annually with a suspected diagnosis of PoTS?  Please provide data for the last 5 financial years if available.

1. How many diagnosed PoTS patients are under active care under specialties within local hospitals?

In accordance with FOISA s 17(1), NHS Shetland confirms that it does not hold the information requested.

2. Is there evidence of an increase in referrals of PoTS patients since May 2020 due to patients suffering with long-Covid?

In accordance with FOISA s 17(1), NHS Shetland confirms that it does not hold the information requested.

3. How many patients with a suspected or confirmed diagnosis of PoTS are seen annually in Emergency Departments or admitted as an emergency? Please provide data for the last 5 financial years if available.

In accordance with FOISA s 17(1), NHS Shetland confirms that it does not hold the information requested as PoTS status is not recorded against A&E attendances.

4. To which individual specialty or specialties are PoTS patients referred for investigation, diagnosis and longer-term management?  e.g., cardiology, neurology, care of the elderly, paediatrics. Please specify separately for children and adults, where applicable. 

Paediatrics - this would be done on individual case requirement such as Physiotherapy, Dietetics and Cardiology

5. Do a) adult patients and b) paediatric patients diagnosed with PoTS have access to a specialised PoTS clinic or service for treatment by dedicated clinicians with an interest/expertise in the condition? If so, please provide details of specialised adult and paediatric services in place.

Paediatrics - If unable to provide suitable service and support, specialist support would be sought if required.

6. Where dedicated PoTS services are available locally, are there any restrictions in place around acceptance of new referrals or longer-term management of patients? Please specify any restrictions imposed.

None available locally

7. If no specialist PoTS services are in place locally, do you reject referrals (back to referring GP), accept referrals under general acute services e.g., cardiology / neurology (please specify) or refer on to a known specialist service elsewhere? (Please specify where).

All referrals are assessed and the individual seen or redirected to the most appropriate clinician

8. How is activity coded for adult and paediatric patients with a diagnosis of PoTS attending for a first or follow up outpatient appointment or admitted to inpatient care?

NHS Shetland uses the ICD 10 coding system for inpatients and outpatients. The ICD 10 code G90.A is used to record PoTS.