Our article ‘Living with COVID: are we in the endgame?'draws attention to key issues experts say we need to keep an eye on as the emergency phase in the pandemic comes to an end. This is the third in a series of articles looking at these issues. Previous articles have focused on unpaid carers and vaccinations.
It’s over two years since the pandemic began. Over 868,000 cases of COVID-19 have been reported in Wales. But for some people the effects of the pandemic continues. This article focuses on Long COVID, its impact and what’s being done to support those suffering from it.
What is Long COVID?
Most people recover from COVID-19 after a short illness. But Long COVID or Post COVID syndrome is when symptoms continue, or new symptoms develop, more than 12 weeks after infection. The likelihood of this isn’t thought to be linked to the severity of the initial illness, or whether someone was in hospital.
Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others and generally have an impact on everyday functioning. […] Symptoms may also fluctuate or relapse over time.
How many people have Long COVID?
We’re still not clear, and there’s no definitive test to diagnose it. According to the World Health Organisation (WHO), Long COVID affects about 10% of people who’ve had COVID-19. The Office for National Statistics (ONS) on 7 April 2022 estimated that 1.7 million people living in private households in the UK were experiencing Long COVID. But, this estimate relies on self-reporting by participants in a survey, rather than people who have been clinically diagnosed with Long COVID.
Looking at clinically diagnosed cases in Wales, the Health Minister, Eluned Morgan, said on 8 February 2022 that:
…by January, just over 2,400 people had been diagnosed with Long COVID by their GP or healthcare professional in Wales, and 2,226 people were referred into our Long COVID rehabilitation services in the last year.
We don't yet know what the impact of Omicron – the current most prevalent COVID-19 variant - may be on these figures.
In October 2021, an academic panel discussing COVID-19 recovery with the Senedd’s Health and Social Care Committee highlighted the data gap in recording Long COVID cases and suggested that GPs need to report the number of patients they’re seeing with the condition.
What’s the impact of Long COVID?
People’s experience of Long COVID can vary significantly. A research study of over 270,000 COVID-19 survivors in the USA found that long-term effects are a mix of “common and diverse”. But many people reported impaired cognitive performance – the so-called ’brain fog’ – and a high incidence of pain and fatigue. One British Medical Journal (BMJ) review has also highlighted the significant emotional consequences, including the impact on people’s identities and relationships, and it can impact severely on people’s ability to work.
The impact of Long COVID can be varied, significant, and debilitating, and clinicians are still struggling to fully understand it.
What are patients saying?
There’s been continuing concerns that patients have struggled to get their experiences taken seriously. One piece of UK research “How and why patients made Long Covid” is very direct:
Long COVID has a strong claim to be the first illness created through patients finding one another on Twitter: it moved from patients, through various media, to formal clinical and policy channels in just a few months.
The research notes how patient reports of prolonged COVID-19 symptoms were initially neglected and disbelieved. But sharing of experiences in online communities drove increased understanding and awareness of Long COVID, leading to scientific, policy, and service acceptance.
There’s other evidence of sufferers encountering limited understanding from others of the impact of the condition. Research by Cambridge University from 2022 on memory problems in Long COVID sufferers found half of those in the study reported difficulties in getting medical professionals to take their symptoms seriously. Earlier UK research also stressed that many sufferers needed to rely heavily on support and advice from online communities of others with the condition.
Work published by Oxford University, the BMJ, Nature, and The Lancet all argue that Long COVID has re-emphasised the need to make more and better use of patient narratives and experiences in research and treatment.
In February 2022 the Chartered Institute of Personnel and Development published guidance for organisations on how to support those with Long COVID to return to, and stay in, work.
Developing services for Long COVID
Preventing COVID-19 itself is key; research from the UK Health Security Agency, The Lancet, and the ONS reports fewer Long COVID cases in those who have been vaccinated.
However, there’s no consensus on the services best suited to tackle Long COVID. Many people have mild symptoms and are self-managing with support and guidance – including COVID recovery apps - but a few have complex symptoms requiring a multidisciplinary approach.
In Wales, the Adferiad (Recovery) programme allocated £5 million worth of Long COVID funding for 2021-22 and 2022-23 to Local Health Boards for new patient pathways, enhanced primary and community rehabilitation services, and access to more specialist care.
In announcing the 2022-23 funding, the Minister said:
The model of community led rehabilitation services appears to be meeting the needs of those who have used the services and by clinicians as an effective way to support people.
The Welsh Government intends to review and assess the impact of the programme every six months. A preliminary evaluation in January 2022 found a broadly positive patient experience, with the service helping to treat and manage their condition. A second report is due in the Spring.
Long COVID Wales and some Senedd Members have put the case for specialist ’one-stop-shops’ to pool expertise and provide single points of patient access.
Different service models have been established elsewhere in the UK:
- England has 90 specialist Long COVID assessment clinics, alongside investment in rehabilitation and primary care;
- in Scotland the focus is on supported self-management, primary care, rehabilitation and secondary care investigation and support, but there have also been calls for specialist clinics; and
- in Northern Ireland, multi-disciplinary assessment services have been established, with support in primary and secondary care.
What next?
There’s still much to learn about Long COVID. Cardiff University is among fifteen UK bodies which have received some of the £20 million of funding from the National Institute for Health Research to help tackle Long COVID. Cardiff will be looking at new models of care, including self-management programmes and developing tests and treatments. In Wales, some patients have also turned to opera to aid their recovery. No two patient experiences are exactly the same and responses to Long COVID seem likely to be just as varied.
You can find advice on Long COVID at NHS111, Asthma and Lung UK, and the British Heart Foundation.
Article by Paul Worthington, Senedd Research, Welsh Parliament
