01452 504989 or 0800 652 5193 (Freephone) info@healthwatchgloucestershire.co.uk

As more and more people are being diagnosed with post-COVID syndrome (long COVID), Healthwatch Gloucestershire has published a new report highlighting the need for better communication about the condition and the care and support that’s available in the county.

The report, Post-COVID syndrome: People’s experiences of health care and support in Gloucestershire, aims to help local services understand how to provide patients with the best possible care from diagnosis to treatment.

It is estimated that around 1.3 million people in the UK had post-COVID syndrome in January 2022 (source: ONS long COVID data). Symptoms, which can last for weeks or months, include extreme tiredness (fatigue), shortness of breath, chest pain or tightness, and problems with memory and concentration (‘brain fog’). While the severity of people’s symptoms varies, for many the condition is debilitating and life changing.

In December 2021, Healthwatch Gloucestershire carried out a snapshot research project, asking people to share their experiences of the condition and the care they have received or would like to have received from local health and social care services.

The Gloucestershire Health and Care NHS Foundation Trust supported the project by promoting the research to patients who are using the county’s Post-COVID Syndrome Assessment Service.

56 people responded via an online survey and phone interviews, providing valuable insight which local services can learn from. Healthwatch Gloucestershire has analysed this feedback and identified common themes and recommendations for how services can improve care for people with post-COVID syndrome.

Key themes

  • People don’t always know which services are available to help them.
  • Most people were helped by their GP and a smaller proportion were helped in hospitals.
  • People are waiting a long time to hear from Gloucestershire’s Post-COVID Syndrome Assessment Service after they have been referred for support.
  • Patients felt left alone to seek their own treatment options.
  • Being proactive to find support can be challenging due to brain fog and fatigue.
  • People were not often given the opportunity to have face-to-face conversations with clinicians.
  • Long waiting times and disjointed services make mental and physical wellbeing more difficult to treat.

The report includes stories from three Gloucestershire residents, who recall their life-changing experiences of post-COVID syndrome. Barbara ended up in A&E being treated for a serious heart condition after waiting 18 months to be referred for her symptoms. Clara, a nurse, has struggled to get the care she needs for her severe and ongoing neurological symptoms, and Cameron continues to receive support for the many physical and emotional symptoms he experiences after being hospitalised with COVID. (Read more in the report.)

Recommendations for improvement

Based on feedback received from patients, Healthwatch Gloucestershire is recommending that those responsible for health and social care in Gloucestershire take the following actions to improve support for people with post-COVID syndrome.

  • Create a public awareness campaign about the NHS support that is available.
  • Make sure GP practices are aware of the different services and support groups available, with information ready to share when people first present with symptoms.
  • Communicate openly and clearly with people about the waiting time between referral and consultation and wellbeing support.
  • Share practical and helpful tips with patients, such as breathing exercises, as part of a more active approach to care.
  • Invest time and resources in face-to-face support so that people feel less isolated.
  • Continue to fund advice and information events as these are an effective way to provide support for patients.

Helen Webb, Healthwatch Gloucestershire Manager, said: “Post-COVID syndrome is a newly defined condition, so clinicians and services are still learning and adapting how they treat and care for people. That’s why it’s so important to ask patients about their experiences, to understand what can be done differently to provide better care. Thanks to everyone who talked to us so openly about the challenges they are facing and the support that is helping; your feedback will make a difference.”

Gloucestershire Health and Care NHS Foundation Trust has welcomed the report, and they are already using the patient feedback to help review and develop services for people living with post-COVID syndrome.

You can share your experiences of post-COVID syndrome or any other aspect of Gloucestershire’s health and care services with Healthwatch Gloucestershire by calling Freephone 0800 652 5193, visiting healthwatchgloucestershire.co.uk, or email info@healthwatchgloucestershire.co.uk.