Employment & PoTS: Information for employers

What is PoTS? 

PoTS is a long term (chronic) health condition that was recognised and named in 1993.

When affected people stand up (and sometimes when they sit up), their blood vessels are unable to narrow efficiently to maintain their blood pressure. To compensate for falling blood pressure, the heart races and other changes occur within the body.

Consequently, patients experience many symptoms when upright including 

• heart palpitations
• dizziness
• fatigue
• difficulty concentrating
• chest pains
• sweating
• shaking
• abdominal pain
• other gut problems
• headaches
• and fainting 

An employee has informed me that they have PoTS. What does this mean? 

It is not possible to describe in this document the impact that PoTS will have on your employee as the condition varies from person to person, but here are a few things to consider:

• In basic terms, your employee may have difficulty in standing or sitting upright for long periods of time, may have a tendency to faint or feel faint, and may suffer with fatigue. 
• PoTS is a predominantly invisible condition and many of the symptoms experienced are not evident to others unless highlighted by the person themselves. Whilst this can sound alarming, many PoTS patients lead normal lives, and their condition has minimal impact on work. 
• Not every employee will require adjustments at work and with effective communication between you and your employee, appropriate solutions can be found to most of the common issues faced by PoTS patients in the workplace. 

Is PoTS a disability? 

The severity of PoTS can vary from person to person so there is no one answer to this question.

A person is considered to be disabled if they have a physical or mental impairment that has a substantial and long-term negative effect on their ability to do normal daily activities. Employers have a duty to make reasonable adjustments and must ensure that the affected person is not subjected to bullying or harassment. 

Laws regarding disability and employment vary between the different countries within the UK. 

The Equality Act 2010 applies in England, Scotland and Wales. 

Northern Ireland is slightly different and follows their Disability Discrimination Act 1995. 

What sort of adjustments may be necessary? * 

It would always be recommended that employers discuss any requirement for adjustments with employees. This should be kept under regular review during their employment, taking into consideration any changes in role/duties as well as any requests from the employee. 

Below is a list of potential adjustments which could be considered. It’s worth noting however, that it may not be necessary to make all of these adjustments or indeed any adjustments at all. As PoTS symptoms can fluctuate over time, adjustments may only be required for a limited period.  

• Fluids – Most affected people need to drink 2-3 litres or more of fluids throughout the day. They will need to keep a water supply nearby and may require frequent toilet trips.  

• Food – Many patients need to make adjustments to their diets such as eating 5 or 6 times throughout the day. Some people have special diets due to food allergies and intolerances. 

• Temperature regulation – Heat is a common trigger for PoTS and a temperature-controlled environment is helpful. 

• Posture – One of the most common triggers for PoTS is prolonged standing (or sitting). Patients benefit from being able to change position regularly. Roles which require long periods of standing may need to be adjusted so that the employee can sit down. It may be necessary for patients to elevate their legs whilst sitting or lie down flat at times.  

• Fatigue and Pacing – Due to fatigue, it may be necessary for affected people to pace their activities, having regular short breaks. Some employees find it easier to work from home, therefore eliminating the extra fatigue caused by the commute, or work more flexible hours in order to better manage their fatigue. 

• Exercise – Although exercise usually makes people with PoTS feel more unwell for hours afterwards, it is also a key part of treatments for most, and essential to keep patients healthy. Affected people need to make time in their week outside of work to exercise and recover afterwards. It may seem surprising to colleagues that people with PoTS take exercise and yet have difficulty with simple tasks like standing up for only short periods of time. Managers can help greatly by supporting their colleagues in understanding this. 

• Shift work – PoTS patients often experience difficulties with sleep and fatigue. Regular working hours can be helpful. 

• Transport – Busy buses, trains and underground tubes which can be excessively hot and lack seating are a common trigger of symptoms. Working from home where possible can be helpful, especially on highly symptomatic days. For some, a disabled parking space and wheelchair access may be necessary.  

*Based on expert opinion.

Will people with PoTS need to take time off work? 

Many people with PoTS are able to work regularly and require little or no sick leave due to their PoTS. Some more severely affected people may require sick leave during flare ups. Some people with PoTS will need to attend medical appointments for review, even if their condition is well managed. Regular medical reviews can in turn prevent sickness absence. Even if it is not the employer’s normal practice to pay employees who take time off to attend medical appointments, it may be reasonable to make payment in the case of an employee with a disability. 

It is common for employers to have a sickness absence policy or tool which provides for various “trigger points”- points at which an employee’s absence would begin to be managed under the policy. The Bradford Factor is one example of these tools. This can discriminate against people with chronic conditions that constantly change, where brief bouts of illness are unpredictable. It may be considered a reasonable adjustment to adjust these trigger points for employees who have a disability. 

If I make adjustments for an employee with PoTS, what does that mean for other staff? 

As can be seen from the examples above, most adjustments that can support employees who have PoTS require minimal impact on the workplace and indeed other staff. Through effective communication, both with the employee who has PoTS and other colleagues, most workplace issues can be easily resolved. Legislation also protects employers who make adjustments for their employees. Section 13(3) of the Equality Act 2010 for example, makes it clear that it is not discriminatory against other employees to give special treatment to a disabled employee. 

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How to learn more about linked medical conditions 

PoTS can be caused by a number of medical conditions, not limited to the following:  

• Ehlers-Danlos Syndrome – an inherited disorder of collagen which affects many bodily systems including joints and gut.  

• Sjogren’s Syndrome – an autoimmune condition that can affect eyes, mouth and joints. 

• Chronic Fatigue Syndrome – causing multiple symptoms including debilitating fatigue. 

• Mast Cell Activation Syndrome – affects many body systems and allergies are prominent
• Long COVID

Adjustments for these additional conditions may also be necessary.  

There are patient support charities that can advise about these related conditions. 

Where can more information be found? 

It may be helpful for the employer to seek advice from the HR advisor/provider. An occupational health specialist can be helpful where health issues are complex. 

A downloadable leaflet with the information above can be found here.