Petition Postural Tachycardia Syndrome: fund training and facilities

Government responded

This response was given on 20 March 2025

Improving health outcomes for people who live with long-term conditions, including postural tachycardia syndrome (PoTs), is a key part of the Government's ambition to build an NHS fit for the future.

Postural tachycardia syndrome (PoTS), also known as postural orthostatic tachycardia syndrome, is an abnormality of the functioning of the autonomic nervous system. Symptoms include palpitations, light-headedness, fatigue, sweating, nausea, fainting and headaches, and are associated with an increase in heart rate.

We recognise that PoTS is a complex condition with a range of symptoms which, in the worst case, can be substantially incapacitating. We also understand the concerns raised with us about a lack of awareness and understanding of PoTS among NHS healthcare professionals and the public, and that as a result, many patients have fallen through the gap between cardiology and neurology services.

To improve awareness of PoTS amongst healthcare professionals, and specifically GPs, the Royal College of General Practitioners provides training as part of its Syncope toolkit, which is available from the following link: https://elearning.rcgp.org.uk/mod/book/view.php?id=12386#:~:text=PoTS,no%20fall%20in%20blood%20pressure.

The National Institute for Health and Care Excellence (NICE) publishes guidance on the diagnosis and treatment of long-term conditions for use by healthcare professionals and commissioners. Whilst the guidance is not mandatory, the Government expects the healthcare system to take the guidelines fully into account in designing services that meet the needs of their local population. NICE has provided healthcare professionals with guidance on PoTS as part of its Clinical Knowledge Summaries, which provide primary care practitioners with evidence based and practical advice on best practice. This is available from the following link: https://cks.nice.org.uk/topics/blackouts-syncope/diagnosis/assessment/

The Department of Health and Social Care funds research through the National Institute for Health and Care Research (NIHR). NIHR has supported a broad portfolio of long COVID research including understanding the links between long COVID and PoTS. The LOCOMOTION study (Long Covid Multidisciplinary consortium: Optimising Treatments and Services across the NHS), confirmed that people with long COVID are more likely than others to have orthostatic intolerance, and that these problems are relatively common. They also made recommendations for clinical practice. The Government is also investing significantly into broader research on neurological conditions. Between 2019 and 2024 the Department awarded over £288 million on research for neurological conditions via NIHR. This research covers conditions such as Parkinson’s disease, neurodegenerative diseases, epilepsy and multiple sclerosis. In 2023/24 (the most recent data available), over £72 million was spent on research into neurological conditions.

This Government has committed to delivering a 10-Year Health Plan. which will set out a bold agenda to deliver on the three big shifts needed to move healthcare from hospital to the community, analogue to digital, and treatment to prevention. We will be carefully considering input from the public, patients, health staff, and stakeholders as we develop the plan. We would encourage everyone, including people with lived experience of PoTS, to engage with that process. This will allow us to fully understand what is not working as well as it should for the NHS, and to identify the potential solutions. Comments can be provided via the following link: https://change.nhs.uk/en-GB/

We recognise that long-term sickness continues to be the most common reason for economic inactivity among the working age population. As part of the Get Britain Working plan, more disabled people and those with health conditions will be supported to enter and stay in work, by devolving more power to local areas so they can shape a joined-up work, health, and skills offer that suits the needs of the people they serve.

Department of Health and Social Care