COVID-19 long-haulers: are they receiving the right support?

[PatientSafetyLearning Team]

A significant number of people (who may or may not have been acutely unwell with COVID-19) are experiencing a prolonged and debilitating recovery at home. In this interview, a patient called Barbara, speaks of her personal experience of safe and unsafe care and highlights the dangers of ‘catch-all’ diagnoses. 

The interview highlights the important question..."are the COVID-19 'long-haulers' receiving the right support and care?"

Please join the conversation by sharing your thoughts and experiences below. If you are not already a member, you'll need to sign up first here. It's quick and easy to do. 

[PatientSafetyLearning Team]

Additional reading:

• Patient safety concerns for Long COVID patients (6 July 2020)
• Press release: Patient Safety Learning calls for urgent action to ensure Long COVID patients are heard and supported (6 July 2020)
• My experience of suspected 'Long COVID'

[Patient Safety Learning]

See tweet below from Dr Jake Suett on sharing information on Long-covid:

 

[Mark Hughes]

The NHS have today announced a new five-point package of measures to support Long COVID patients. We've set out Patient Safety Learning's initial thoughts on this in this press statement and would be keen to hear the views of others: https://www.patientsafetylearning.org/press-releases/nhs-announces-five-point-package-to-support-long-covid-patients

[Anonymous]

Online services are not helpful need to be thoroughly assessed and monitored and quickly as for many it’s almost 7 months and scarring is happening in vital organs.Very careful on the graded exercise and cbt -money spent on  the assessments  and monitoring and quickly 

[Anonymous]

I’m 6 months plus now struggling with this illness. The only thing that has helped me throughout has been iyengar yoga. The IYA UK have produced a covid suggested recovery program (On their website)which should definitely be looked at as is a wealth of expertise from senior teachers (some who have also struggled with covid19)Breathing has been a huge help To me throughout this and again all Iyengar teachers Have a wealth of knowledge about different methods and techniques in breath control. If we can bring yoga into the program it gives the patient the empathy and kindness that has been so lacking for some throughout this and also will give useful techniques to support the body and breath with this illness . 

[Patient Safety Learning]

Thank you 'Gerdayoga' for your post and I'm sorry to hear you're struggling with this.

Here's the link to the Iyengar Yoga covid recovery programme you mention: https://iyengaryoga.org.uk/covid-19-a-suggested-recovery-programme/ so others can take a look.

If you would like to continue the discussion please do post again or you can email us directly at content@pslhub.org. We are collating all feedback and can maintain your anonymity if you prefer.

[Anonymous]

Persistent smell and taste loss following Covid-19 can occur in about 10% of those who experience the symptoms when actively infected by Covid-19. These symptoms can have a significant quality of life impact: https://doi.org/10.1111/coa.13484. For support - go to Fifth Sense

 

[Mark Hughes]

On the hub now there is new information from National Institute for Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP) published today which gives more details about the forthcoming guideline on post-COVID syndrome which is planned to be published by the end of the year.

The guideline scope published today defines post-COVID syndrome (also known as Long COVID) as signs and symptoms that develop during or following an infection consistent with COVID-19 which continue for more than 12 weeks and are not explained by an alternative diagnosis. It says the condition usually presents with clusters of symptoms, often overlapping, which may change over time and can affect any system within the body. It also notes that many people with post-COVID syndrome can also experience generalised pain, fatigue, persisting high temperature and psychiatric problems.
 

[Patient Safety Learning]

Some useful resources and advice from Dr Charles Shepherd here (scroll to his comments at the end of the article)