‘Nothing like they had ever experienced before…’

An estimated 2 million people in the UK are living with Long-Covid – suffering with symptoms including intense fatigue, brain fog and shortness of breath, weeks or months after an initial Covid-19 infection.

Recent Office for National Statistics (ONS) data found that 3 per cent of the UK population reported experiencing Long Covid – or symptoms which persist for more than four weeks after infection. The ONS also reported that Long Covid affects the day-to-day lives of 1.4 million people in the UK, with fatigue, shortness of breath, loss of sense of smell, and muscle aches being the most common symptoms.

Long Covid has also been found to particularly impact certain groups – including people with disabilities and health conditions, women, people aged 35 to 69, those living in deprived areas, people working in social care, health care, and teaching.

The April edition of the British Psychological Society's Division of Clinical Psychology's Covid-19 Bulletin shared the experiences of psychologists involved in Long Covid services. Among them were Assistant Psychologists Shahmin Khanum and Amy Somerton, who worked together on a long covid peer support group based at the Humber Coast and Vale Resilience Hub. It provides wellbeing support to NHS and social care staff, the emergency services, third sector and voluntary organisations and their families.

Khanum – who has since moved to work as an Inclusion and Belonging Advisor for Derbyshire Community Health Services NHS Foundation Trust – said she and Somerton joined the Humber Coast and Vale Resilience Hub in March 2021. 'After being tasked with creating Long Covid support, Amy and I explored existing Long Covid services. We had struggled to find support groups, and even more so, support focused on health care professionals.'

Many service users shared that they felt Long Covid wasn't taken seriously in the media or by those around them.

Somerton said that people had been presenting at the Resilience Hub with Long Covid who felt extremely isolated by their condition. 'We thought that if we could get all of those people into a setting where they could have a shared experience and validation it could be really powerful in helping with their isolation.' They both felt they wanted any service they created to be designed on the basis of service users' needs and ran focus groups with people experiencing Long Covid symptoms to find the type of support they most wanted and needed.

After setting up the service Somerton (who still works with the Resilience Hub) and Khanum were inundated with referrals, and set up two groups of 13 people for an eight-week programme of peer support and self-management. The groups are still ongoing thanks to a steady stream of referrals, and Somerton and Khanum have repeatedly asked service users for feedback to improve the groups.

'Long Covid wasn't taken seriously…'

Shahmin explained some of the psychological impacts of Long Covid and how these have changed throughout the course of the pandemic. 'When running our focus group, information on Long Covid appeared to be limited. Many service users shared that they felt Long Covid wasn't taken seriously in the media or by those around them; this often led them to feel isolated and unable to share how they were truly feeling. For example, service users had shared that their fatigue was nothing like they had ever experienced before prior to contracting Long Covid. When sharing their experiences with those around them, they would often be met with scepticism. Having to continually explain or justify one's lived experience can take its toll. It does appear that attitudes towards Long Covid are slowly changing for the better, but maybe not at the speed that they should.'

It has been a privilege to support our health care professionals. It has also highlighted a wider issue: attitudes towards long-term illness in general.

Somerton and Khanum have shared the model of Long Covid peer support over the past year with NHS England and fellow healthcare professionals, in part thanks to the positive feedback they have received from people who have used their service. Somerton told me that it had been an enjoyable experience to work with those coping with Long Covid. 'Despite the usual challenges that come with setting up a new virtual provision, it has been very rewarding to create a service which has been developed based on the needs of individuals with Long Covid.'

Although Khanum has since moved on, helping to develop this service as part of her first Assistant Psychologist post, she said, had taught her a great deal about co-production and broader issues surrounding the condition. 'I am grateful to have had the opportunity to work on something like this. It has been a privilege to support our health care professionals. It has also highlighted a wider issue: attitudes towards long-term illness in general.'

A lot to unpack

Clinical Psychologist Dr Stuart Linke, an Associate Research Fellow at UCL's E-Health Unit, and Health Psychologist and Principal Research Fellow Dr Katherine Bradbury (University of Southampton), since the summer of 2020 have been involved in the development of an app and clinician dashboard to support people in their recovery from Long Covid. Led by Professor of eHealth and Primary Care Elizabeth Murray (UCL) and academic GP Dr Henry Goodfellow (UCL), the NIHR-funded Living with Covid Recovery Project has involved collaboration with NHS trusts, physiotherapists, computer scientists and the health tech company Living With Ltd.

Linke, who is the Mental Health lead on the project, emphasised that the Living With Covid Recovery app cannot be downloaded directly by people with Long Covid, rather a clinician recommends the app to those who may need it, and clinicians who recommend it also have access to a digital dashboard where they can monitor patients' progress. At the beginning of the project, the team's main aim was to develop a useful system, or an MVP (minimally viable product) as quickly as possible.

'We started to bring together some of the expertise and clinical knowledge from respiratory physicians, from respiratory physiotherapists, and very quickly produced an MVP to start using and learning from that experience. It's very different from what you might normally do in a research programme, reviewing data from previous research, speaking to users to get a proposal together, none of that happened, the main thing was to get a clinically useful project out there as quickly as possible, and the evaluation would come about as part of what we were doing.'

The Living With Covid Recovery Programme is now in 42 clinics across 30 NHS Trusts and 410 clinicians have been using it to support almost 6,500 patients.

The group trialled their MVP at Barts' Hospital, which had post-discharge clinics for Covid patients, and following this the team began developing the app and dashboard further. 'The app was initially loaded up with some videos about topics including breathing and nutrition, but we've slowly developed it over the last 18 months to include interactive programmes. I've written the programme on anxiety, based on CBT and a bit of ACT, and we also have programmes on brain fog, mindfulness, and fatigue, as well as content on depression, nutrition, and sleep.'

People with Long Covid can choose which programmes to complete, with help from healthcare professionals, and can also complete self-report questionnaires on memory, fatigue, anxiety, depression, respiratory issues, and health – the results of which can be viewed by healthcare professionals to monitor change over time and interactions between symptoms. Healthcare professionals can also use the dashboard to directly communicate with users of the app and to recommend certain programmes within the app which may be helpful. 'The app is holistic; we're working with psychological problems and physical health in the same place.'

Bradbury has been involved with the behavioural science aspects of the Living with Covid Recovery Programme. She explained that some of the symptoms of Long Covid could benefit from certain changes in behaviour. 'That might be engaging with CBT techniques or monitoring fatigue. Throughout the development process of the intervention we thought about how we could make it as easy as possible for people to make those changes.'

Throughout every aspect of the project Bradbury and her colleague Fiona Hamilton have been looking at how to mitigate against health inequalities to ensure the programme is as accessible as possible, and to look at the evaluation of the project to identify possible health inequalities. 'At the implementation stage we decided we didn't want this to be a standalone app – we wanted people to be able to access it through clinics and have a clinician working alongside them as we know this boosts engagement and is helpful for anyone who is less confident using technology.'

The project team have also been developing a module in the app for carers – to allow them to support someone with Long Covid to use the app. 'This would be helpful for underserved groups, people whose first language is not English, or anyone who may benefit from additional support from someone else.'

Initially, people using the app had access to several full programmes of support, which they could read in full whenever they liked – this has since been changed. 'That could be quite overwhelming but also not very useful – if you read everything at once that means you're less likely to remember it all and put it into practice whereas if you do it step by step it's a lot more manageable. Part of the work was about trying to break that up and have pauses and try to get people away from just reading, and into trying the techniques that are presented to them and reflecting on what might be useful as well as setting goals.'

The Living With Covid Recovery Programme is now in 42 clinics across 30 NHS Trusts and 410 clinicians have been using it to support almost 6,500 patients. Bradbury told me there is much to discover through research on the results. 'Evaluation is quite difficult in this context as this isn't a randomised controlled trial, but we can look at quantitative data and trajectories, what might mediate or moderate improvement… are there moderators like demographic characteristics? There's a lot of data to unpack.'

More info:

• Living With Covid Recovery Programme
• DCP Long-Covid Bulletin Special edition
• More from The Psychologist on Long Covid

Measures to tackle Covid-19, including lockdowns and remote learning, had a dramatic impact on the way clinical psychology training was delivered. Ella Rhodes spoke to psychologists and the chairs of the Group of Trainers in Clinical Psychology about their members' experiences during the earlier part of the pandemic and the lasting impacts on training. 

Dr Annette Schlösser, Clinical Psychologist and Academic Coordinator (University of Hull), and Dr Anna Daiches, Clinical Director (Lancaster University) are Co-chairs of the Group of Trainers in Clinical Psychology (GTiCP). They gathered experiences from their group and found that clinical psychology trainees felt isolated during the earlier stages of the pandemic.

Some members of the GTiCP said they had little support from institutions to prepare, plan and deliver online training – at a time when most staff were working from home. Perhaps unsurprisingly the 2020 cohort of clinical psychology trainees were most affected by Covid measures – one member of the GTiCP said this led to very low expectations of clinical work and anxiety about working in placements.

One member of the group said all year groups were showing more anxiety and depression than they had ever known. 'Trainees are not able to cope with demands of going into placement and coming on campus following 18 months of basically being at home, but trainees who were not used to going onto placement and campus are finding it extremely difficult.' 

Members of the GTiCP said they could see online-delivery of parts of clinical psychology courses, as well as online therapy, becoming standard, and that this would require enhanced skills on the part of trainees and those who train clinical psychology doctoral students.   

Dr John McGowan, Academic Director of Clinical Psychology (Salomons Institute for Applied Psychology) said that service-user involvement in the Salomons course had been impacted by Covid-19 – particularly among service-users with other vulnerabilities to the virus. Health concerns also impacted many trainees. 'A number of the trainees have faced challenges balancing Covid risks with offering access to specific service groups who have had difficulties working online. These trainees have often worked more onsite through the pandemic and the placement risk assessments have been more important.'

McGowan said at Salomons there would be some move to online therapy in its stakeholder trusts and around 10 per cent of its total teaching of clinical psychology would be held entirely online in the future. 'We do not wish to pursue a pathway where we use simultaneous remote and campus-based attendance at the same session. The quality of the learning experience, especially for those offsite, is reduced and it places and extra burden on lecturers and other trainees.'