Can I claim PIP for Postural Tachycardia Syndrome (PoTS)

Information about PoTS to help you claim PIP:

This guide provides insights into PoTS and its potential impact on daily living and mobility. It explains how PoTS might affect your ability to carry out everyday activities safely, effectively, accurately, and repeatedly.

Postural Tachycardia Syndrome (PoTS) is a condition where your heart rate increases very quickly after getting up from sitting or lying down often causing dizziness or lightheadedness.

It can be managed with lifestyle changes or sometimes with medication. Some people may have a defibrillator fitted.

Symptoms of PoTS

Symptoms can vary from person to person and symptoms can happen when you stand up from sitting or lying down:

Dizziness or lightheadedness
Heart palpitations
Chest pain
Shortness of breath
Shaking and sweating
Nearly fainting or fainting

Other symptoms can include:

problems with your stomach or digestion, such as feeling sick, being sick, diarrhoea, constipation, bloating and tummy pain
headaches and problems with your sight, such as blurred vision or tunnel vision
your hands and feet looking purple – this may be more difficult to see if you have brown or black skin
weakness and extreme tiredness (fatigue), not being able to do much exercise, and sleeping badly
problems with thinking, memory and concentration (brain fog)

You may find your symptoms are worse in the morning, and they may change from day to day.

The causes of PoTS is unclear but it can develop suddenly or over a period of time. You are more likely to get PoTS if you have long covid, encephalomyelitis (ME) or chronic fatigue syndrome (CFS), or joint hypermobility syndrome.

Symptoms can be worsened if you:

are in a hot place
standing or sitting upright for long periods of time
eating, especially refined carbohydrates like white bread
not drinking enough fluids
resting too much
drinking alcohol
stress
being on your period
exercise

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Daily living descriptors

The following sections outline the daily activities assessed in PIP claims and how PoTS may affect them. This is not an exhaustive list; ensure all relevant details are included in your application.

1. Preparing food

PoTS can impact how you prepare a simple meal in a variety of ways:

You are unable to stand for any length of time in the kitchen because it makes your symptoms worse
You are reluctant to prepare food as food triggers bowel issues.
You are nauseous when preparing food, so you are reluctant to go into the kitchen to make something to eat
You need prompting by someone to remind you to prepare food.
You use a perching stool whilst preparing food because you can’t stand for long periods of time.
You prepare quick and easy foods which don’t require the use of a cooker etc because of heat intolerance making your symptoms worse
You may use preprepared food, such as, chopped vegetables, pre-grated cheese to reduce your time spent in the kitchen

You may use aids in the kitchen such as a perching stool, jar opener, tip kettle etc

2. Eating and drinking

You may experience the following when eating and drinking:

Forgetting to eat/drink therefore require reminders and prompting.
Sensory sensitivity which limits food choices due to taste, texture or smell
You are unable to finish the food on your plate because of nausea, dizziness, lightheadedness
You may experience allergy or intolerance to foods and drinks when consumed due to your PoTS. This can include skin, stomach or bowel issues
Consuming high amounts of carbohydrates in one meal may worsen your PoTS symptoms due to blood being diverted to help with digestion which can lead to a drop in blood pressure.
You use easy grip cutlery to eat your food
Eating hot food can lead to worsening PoTs symptoms causing pooling resulting in your blood pressure dropping

3. Managing Treatment

This descriptor examines how you manage health-related treatments, and you may find:

You may attend self-management support groups
You may have a social prescriber that you are working with to help you improve your general health and wellbeing
If you take medication, may need to be prompted and reminded when to take it
A dosette box may need to be used to remind you to take your medication
Use of a blood pressure machine at home to monitor your blood pressure and report your findings to a health professional

4. Using the toilet and managing incontinence

This descriptor is about the ability to use a toilet independently and to be able clean yourself afterwards and have no continence issues:

You may find it difficult to get on or off the toilet due to feeling dizzy or lightheaded
You may have an increased urgency to urinate with little or no warning due to your PoTS and may not make it in time because you have to move slowly to prevent dizziness, fainting or falling due to your condition
You may wear incontinence pads due to being unable to get to the toilet on time
You may have accidents and need to change your clothing as a result of not getting to the toilet in time
You may have grab rails, raised toilet seat toilet rail to help you get on or off the toilet more easily

You may use a commode because you are unable to get to the toilet in time

5. Washing & Bathing

This looks at the ability of being able to bath or shower and what issues you may experience:

You need to be prompted or reminded to have a bath or shower because you avoid washing and bathing due experiencing symptoms of PoTS
You use a seat in the shower or a bath board in the bath so that you can sit whilst you bath to reduce symptoms and prevent potential falls which may result in injury
Grab rails are used for balance and prevent falling when you experience dizziness or lightheadedness in the bath or shower
You struggle with regulating the water temperature when showering or bathing
After having a bath or a shower, you need to have a long lie down to recover before drying yourself and/or getting dressed

6. Dressing and undressing

This looks at whether you can dress and undress yourself and choose appropriate clothing:

Are you able to use open/close fastenings on clothes?
You may need prompting/reminding to get dressed or undressed
You wear compression clothing to alleviate your symptoms
You may need help from someone to help you get dressed/undressed because you struggle to put on or take off compression clothing as the extra exertion needed increases your PoTS symptoms
You are reminded that you need to change your clothes because they need washing

7. Communicating Verbally

This descriptor looks at someone’s ability to verbally communicate and to be able to express and convey information and to be able to receive and understand information

Due to your PoTS symptoms, you may struggle with communicating verbally due to poor executive function skills, fatigue, slow processing skills, poor memory, brain fog, struggling to find the right words etc

8. Reading understanding signs, Symbols and Words

This relates to the ability to read and understand written or printed information

You may struggle to process written text due to your PoTS
You may experience fatigue, struggle with concentration or blurred vision which makes it difficult for you when reading

9. Mixing with other people

People with PoTS can struggle socially and find it difficult due to:

You may find meeting with people that you don’t know challenging and may require support
You may become anxious in noisy, unfamiliar environments
You may become overwhelmed and need to leave the situation which you are in
You may find that your PoTS symptoms worsen due to stress and anxiety as you struggle to mix with people

You don’t go to all events which have been planned due to your PoTS as you need to pace yourself and struggle when mixing with people due to the variability of your symptoms.

10. Managing Money

This descriptor looks at if you can manage their money:

People with PoTS can usually manage their money and have no issues in this area. If this is not the case, then you need to explain the issues you have

Mobility descriptors

These evaluate how epilepsy may affect mobility related tasks. This is not an exhaustive list; ensure all relevant details are included in your application.

1. Planning and Following a Journeys

PoTS may make planning and following a journey challenging:

You may struggle to plan or navigate an unfamiliar journey without support from someone else due to brain fog, difficulties in organising information, delayed processing skills – can’t find the right words, slow thinking etc
You struggle to adapt to unexpected changes when following a journey e.g. an accident, road works, delays due to traffic etc
You have may need someone with you when following a journey for safety reasons e.g. your PoTS symptoms may increase, and you struggle to navigate the journey
Being out in public and trying to navigate your journey may result in you being anxious due to an increase in heart rate, body temperature, experiencing palpitations

Having started your journey, you may not be able to finish your journey, and you have to return home due your PoTS symptoms being exacerbated

2. Moving around

Moving around may be affected due to PoTS:

You may use a walking aid such as a walking stick, crutches, wheelchair because you experience dizzy spells, balance issues, fatigue or fainting
The hot weather may be a contributory factor of making it more difficult to walk due to fatigue, increasing heart rate or other PoTS symptoms, such as, pooling where your blood drops and you may experience dizziness, lightheadedness, faint, blurred vision and etc
You need to stop and rest due to your symptoms
You need someone with you for safety e.g. crossing roads – you may do this slowly due to your PoTS symptoms
You may experience pain and stiffness when walking because of your PoTS

Finally…

It is important that when you complete your PIP form, that you include how PoTS affects you in relation to each descriptor. Ensure that you give specific examples, under each descriptor, where you have struggled due your PoTS, where appropriate. It is important that you include any aids, adaptations or support/supervision that you need to help you complete each activity, where appropriate.

This information only covers PoTS. If you have any other health conditions and/or disability you should include how they impact you under the relevant descriptors.

Remember to include copies of any relevant medical evidence, diagnosis letters, care plans etc to support your claim for PIP.

Please remember that this is not a complete list and if you have other symptoms or conditions that affect this descriptor, they need to be included on your PIP claim. More information can be found at www.gov.uk