Long Covid: Information gaps and the safety implications (7 June 2021)

Summary

More than a million people in the UK are now living with prolonged symptoms of Covid-19,[1] also referred to as Long Covid, including at least 122,000 NHS staff.[2] With many struggling to come to terms with life-changing health challenges, Long Covid is considered by some to be the next pandemic.

Good health information has the power to educate, influence and clarify; all of which are critical to effectively responding to public health crises and keeping patients safe. But the absence of good information can leave patients, staff and the wider public feeling confused and unsupported, and can widen health inequalities. 

In this blog, Patient Safety Learning has identified four key areas where better information could help improve care for those living with Long Covid:

1. Symptoms of Long Covid
2. Long Covid assessment centres
3. Education and awareness
4. Performance and effectiveness.

Content

“Access to health information to help people make informed choices about their health and wellbeing is vital. More so when an illness becomes long term and stops people living their normal life. When trusted information is missing, misinformation and disinformation can fill the gap and cause real harm. People with long Covid should not be left to Dr Google, particularly when we know Covid has hit disadvantaged communities hardest.…”

Sophie Randall, Director at Patient Information Forum

Symptoms of Long Covid

Patients with Long Covid report wide-ranging symptoms affecting all body systems. Many also experience serious relapses and changing symptoms several months after their initial infection.

Despite this, there is still very little awareness or proactive messaging around the range of symptoms related to Long Covid. This can lead to:

1. clinicians misdiagnosing or dismissing patients with Long Covid symptom patterns [3] [4]
2. patients not recognising that health problems they are experiencing could mean they have Long Covid
3. patients not being supported to adequately ‘pace’ to avoid relapses
4. the general public being unaware of the long-term health risks of contracting Covid-19, which may impact their ability to make informed decisions about their behaviour and the degree of risk associated with this.

What information is needed?  

• A list of the most common symptoms of Long Covid in both adults and children needs to be widely and publicly communicated so that patients and clinicians can recognise when specific support is needed and access the appropriate care.
• A Public Health England campaign designed to inform people of the symptoms of Long Covid, accessible to everyone (eg different translations, Easy Read, hardcopy, user friendly, culturally appropriate) and in line with best practice patient information standards. [5] Tailored messaging should be developed to target communities most affected by Covid-19.

Long Covid assessment centres

Last year, the Government announced the opening of 69 Long Covid Assessment Centres throughout England. However, there are concerns that the promises of support made have not materialised and that many Long Covid patients are struggling to access referrals, clinical investigations and treatments[6] or are facing long waiting times.[7]  

Patients have told us how difficult it has been finding out where their nearest centre is, what services are provided and how to be referred.[8] Many have raised concerns that multidisciplinary clinical teams are not available, as originally implied, [9] which has led to delays in investigations and treatment. Some centres are focusing largely on talking therapies.[10]

The latest NHS guidance, states that 'Post‑COVID‑19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed'.[11] However, some patients are still being told they are unable to be referred before 12 weeks, highlighting a clear disparity in some areas between the guidance and patients’ experience of the implementation of this in practice.

In the absence of clear information, patients have been left ‘joining the dots’. Thousands have turned to online forums, [12] collectively trying to figure out how, where and if they can get the support they need.

What information is needed?  

• A publicly available list of the assessment centres that are active in England, and equivalent services in Northern Ireland, Scotland and Wales.  This should include information on the exact locations, capacity, services offered and referral processes relevant for each, and should also outline the Long Covid services available for children. This would enable patients and healthcare staff to have a clear, consistent understanding of what is available locally which would improve access. This information would also provide transparency around service provision so that geographic disparities can be identified and addressed.
• Timely and regular information to help GPs and other healthcare staff understand how to implement guidance and any updates as they are released.

Education and awareness

There is a widespread lack of awareness of the debilitating and relapsing nature of Long Covid. Public messaging also contains little information on Long Covid’s presence among all age groups, including young children. ONS data suggest that 13% of under 11s and about 15% of 12- to 16-year-olds reported at least one symptom five weeks after a confirmed Covid-19 infection.[13]

While children are not part of the vaccination programme, it is especially important that the public are offered the information needed to make informed choices around precautionary measures. 

Lack of education and awareness has meant many people continue to face disbelief and poor support from healthcare professionals, employers, schools, friends and family; hindering their recovery and access to services. This can also understandably have a devastating impact on a person’s self esteem and wellbeing.

“My Dr didn't believe I'd had Covid, ignores my symptoms. I have dealt with it all on my own. I feel I have aged 20yrs in a year. My optician told me I have Long Covid because of deterioration in my eyes, my orthopaedic consultant also said I was suffering from it. I now suffer from wheezing & sob (shortness of breath) which I've never had before.”

Patient feedback submitted to the Long Covid Support Survey. 

What information is needed?

• Proactive, public messaging around the prevalence and nature of Long Covid, with targeted messaging aimed at the communities most affected by Covid-19.
• Clear, evidence-based training (co-designed with people with lived-experience) to be mandatory for anyone working with people living with Long Covid.
• Information for employers and education providers to help guide them in how to safely and fairly support people living with Long Covid.
• Feedback to be routinely collected from patients who have persisting symptoms of Covid-19; used to inform practise and identify further training needs among staff.
• Patient-facing information that is evidence based and user friendly, should be developed to empower people to ask for support, and understand what they can expect from their GP if they have Long Covid symptoms.

Performance and effectiveness

Although there are plans to collect some data on the assessment centres, there is currently nothing available on the performance or effectiveness of Long Covid services.[14] This lack of information not only creates a barrier to quality improvement and monitoring, but also has implications for resource management and transparent reporting.

Without this data, it is impossible to understand the current scale of the challenge to frontline services, to learn rapidly from examples of excellence or to identify areas where improvements are needed to keep patients safe.

What information is needed?

Data need to be made publicly available on the performance of the Long Covid assessment centres, including:

• the capacity of each centre
• number of people referred, seen or are on a waiting list for the assessment centre (and when are they likely to be seen)
• number of face-to-face compared with virtual appointments.
• number of people referred, seen or are on a waiting list for diagnostic tests (and when are they likely to be seen)
• number of people referred, seen or on a waiting list for treatment (and when are they likely to be seen)
• patient feedback on the services provided.

Conclusion

Many people living with Long Covid have been unwell for more than a year, unable to work or to experience life as they previously had. They want to access the right clinical expertise, to understand their symptoms and to be supported to recover as fully as possible. But confusing, absent or inaccessible health information continues to create barriers for them.

The gaps highlighted in this blog, must be addressed to ensure public transparency and to help all patients with Long Covid access safe quality care.

Join the conversation

Are you living with Long Covid? Or perhaps you’re a healthcare professional supporting those who are struggling to recover?

Your perspectives are integral to developing this conversation, so please do share your insights by commenting below. You’ll need to sign up to the hub first, our global patient safety platform (its free and easy to do).

We want to know:

• What did you think of the points raised in this blog?
• What is your experience of accessing or delivering Long Covid services?
• What’s working well?
• What are the main challenges and barriers?
• What more needs to happen to support healthcare professionals and patients?

You can also join the chat about this topic in our community forum here.

Follow us on twitter @ptsafetylearn and retweet this blog to #share4safety using the icon at the bottom of this page.

Related reading:

• How will NHS staff with Long Covid be supported?
• Long Covid Minister needed to respond to growing crisis
• Promises of Long Covid support have not materialised (a blog by Clare Rayner)

References

[1] Office for National Statistics, 2021. Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 1 April 2021. Accessed 7/06/21.  c

[2] Campbell D, 2021. Strain on NHS as tens of thousands of staff suffer long Covid. the Guardian. Accessed 7/06/21.

[3] Patient Safety Learning, 2020. Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’. Patient Safety Learning’s the hub. Accessed 7/06/21.  

[4] Thomas H, 2021. Long Covid patients 'told to go away by GPs'. BBC Wales. Accessed 7/06/21.

[5] Patient Information Forum, 2021. About the PIF TICK. Accessed 7/06/21.

[6] Long Covid Support, 2021. Long Covid clinic survey - March analysis. Accessed 7/06/21.

[7] Sample I, 2021. Some long Covid sufferers in England waiting months for treatment. Guardian. Accessed 7/06/21.

[8] Patient Safety Learning, 2020-21. Long Covid: Where are these clinics? Patient Safety Learning’s the hub forum.

[9] NHS England, 2020. NHS to offer ‘long covid’ sufferers help at specialist centres. NHS England News. Accessed 7/06/21.

[10] Wright S, 2021. Twitter thread. Twitter. Accessed 7/06/21.

[11] NHS England, 2021. National guidance for post-COVID syndrome assessment clinics (updated April 2021). Accessed 7/06/21.

[12] Long Covid Support group forum. Facebook. Accessed 7/06/21.  

[13] Grover N, 2021. Data on long Covid in UK children is cause for concern, scientists say. Guardian. Accessed 7/06/21.

[14] NHS Digital, 2021. COVID-19 Long COVID Assessment Clinic Activity SitRep. COVID-19 Situation Reports. Accessed 7/06/21.