Can Do Healthcare - Thinking Differently Together About Long Covid

Suffolk and North East Essex Integrated Care System (ICS) 1. Introduction Online event Wednesday 17 November 2021 ‘Thinking Differently Together’ about… Long Covid The Covid19 Pandemic has had far reaching implications for our population. A key issue now emerging for many is the implication of living with post viral illness known as ‘Long Covid’. Recent estimates from the REACT-2 Study are that there may be as many as 2 million people now living with Covid19 in England. This event explored the impact of ‘Long Covid’ on people’s lives and early thinking about how we need to support those living with ‘Long Covid’ in Suffolk and North East Essex, and generates some recommendations that will be considered by the ICS Board in December 2021. Wendy Herber, Chair of Healthwatch Suffolk Our Independent Chair, Wendy Herber, Chair of Healthwatch Suffolk, explained that Healthwatch has picked up quite a lot of feedback from people regarding long Covid and post viral fatigue and following an event held for both people experiencing long Covid and health professionals, there were a number of issues identified; people were struggling to be believed with all of the different symptoms they were experiencing; they were struggling to get information about the condition they were facing, they were struggling to find support and at times, people were having to find private help. The process has also thrown a lot of light on other post viral symptoms and conditions. The aim of our Thinking Differently Together event was to look at the implications of post viral Covid and what we can do together to support those people experiencing it and generate some recommendations for action in the Suffolk and North East Essex system. The term ‘long Covid’ includes both ongoing symptomatic Covid-19 (5-12 weeks after onset) and Post-Covid-19 Syndrome (12 weeks or more). It is associated with a wide range of different symptoms impacting physical, psychological and cognitive health. It can also have an effect on quality of life and ability to work or attend education. 1 | Suffolk and North East Essex Integrated Care System

2. Lived experience of long Covid Nick’s story “I’ve been ill now for a year with long Covid. I initially fell ill last November and tested negative for Covid a number of times. I also didn’t have any antibodies; once they did a blood test the GP and the hospital ordered a number of chest x-rays, blood tests – all sorts of things and ruled out everything else, but because I didn’t have a positive test the GP said I wasn’t eligible for help from the long Covid clinic. I found help as I went privately to see a respiratory specialist, who referred me onto a more specialist physio to help with my breathing. I saw her for six months in all, and she has got me from really struggling to finish a sentence, to move around, to where I am today – breathing much, much better but something I still have to practice every day. I’ve also seen a dietitian privately because I’ve had problems with my stomach. I can't eat dairy, nuts or beans and there's lots that upsets my stomach, gives me stomach pain and every day I have nausea, so there's a lot that I've done myself. It’s difficult because I felt I’ve really fallen through the cracks, because I’ve not tested positive and I’ve not got the antibodies and it’s difficult for them to know what to do with me because I’ve not ticked the boxes required. Eventually in September, the GP, I think decided that they would just refer me, and referred me into the long Covid clinic finally, thankfully. I went to see them last month and they’re brilliant. I just have had so much more help. All I wanted really was information on why I was feeling how I did, why I was feeling so sick, why I couldn’t eat. Before I was ill, I would walk five, seven kilometres in the evenings without any worry, and then I couldn’t walk very far without pain, exhaustion and breathlessness and I had chest pain. With the physio I saw, Tarin Walker, she just explained it to me, which was such a relief. I was so determined to get better; I’ve changed my diet, I’ve tried everything I could possibly do, but I think there is a real gap in treatment for people with negative tests or that don’t tick all the boxes or that don’t have all the typical symptoms, but I’m certainly, hopefully, getting the help now.” It was like my body had long Covid but my mind wouldn’t accept it, and these should work together. Sam, 36 You feel isolated… I know we were already isolating but this seems like a final isolation, like you’ll never go back. Keith, 63 I can’t imagine why you would go out by yourself in a wheelchair, it seems insane to me but it’s part of the rehab. Keith, 63 I barely see my friends anymore, they just think I am boring, but I don’t want to go out and then have to leave because I feel too tired. Rachel, 26 I feel sluggish and not myself, like I’m just a body but I am lifeless. Rachel, 26 It feels like everything [existing conditions] has tripled since having Covid… the biggest problem is that I have health problems and Covid. It’s hard to distinguish what is Covid and another health problem what needs to be addressed. Pam, 64 It’s hard to talk to your GP about it, I don’t want to waste their time unless I have something that is red and angry. Pam, 64 I’m not thinking too much about the future because coping with my physical limitations and all my appointments already take up a lot of time. Daisy, 54 It’s hard to explain what I’m feeling… it’s confusing having to start again. Daisy, 54 Talking to someone is essential. It takes a weight off from your shoulders. There is someone out there who can listen to you. Sam, 36 Extracts from research by Revealing Reality, commissioned by Essex County Council Thinking Differently Together | 2

Karen's story - An Interview with David Akinsanya, Health Equity Lead, Suffolk and North East Essex ICS David: “Hello Karen, thank you for doing this – my first question to you is, how did it feel from being acutely unwell and then not recovering as you’d expect to from a virus?” Karen: “Thank you for having me. I got Covid 19: For me it was like mild ‘flu and I thought I’d get through it. I went back to work after a week, however, about three weeks later I was convinced I had Covid again as I ached, and I was so fatigued. The worse bit about Covid 19 was not fighting the virus, which affected me for a couple of weeks but the way it returned and was debilitating. I made myself get out of bed every day and did my best to get dressed. I felt really embarrassed when Tesco delivered my unbagged groceries – I was so exhausted I asked them to dump my groceries on the floor and I would pick them up later, slowly and in my own time. I would often take all day to put groceries away a bit at a time; I still do. I also started getting paranoid about the deliveries and wanting my husband to be there as I was so weak, fatigued and struggled to get down low. I spent a lot of time on the chaise longue in our conservatory, just staring at the garden, not being able to engage with books, magazines or anything. The best I could do was just chat to people on video calls. Trying to manage at home while my husband, an NHS diagnostic radiographer on the front line, is and was, trying to manage himself, never having recovered fully from Covid himself in January, and being in a short staffed, stressful role. I started not being able to put sentences together or getting very confused with what people were saying to me. Situations like this started making me fear whether I was going to be able to do my job again, as that requires attention to detail and organisational skills. Writing text messages or emails became really hard and being able to put together what I wanted to say and making sure it made sense to the person receiving it. I didn’t want to engage with my phone at all: I was too tired, and it was too much. I have a very short concentration span.” David: “What would you say is the worst thing about having long Covid?” Karen: “I’d say it’s the fact that I couldn’t accept that I was ill. I would tell everyone, I still do, that I want to get back to work. Looking back, I was clearly not in a place to even try. This has changed in different ways over time – fatigue/lack of energy because it is so debilitating and trying to explain that to others that clearly still don’t understand it. I know that I definitely didn’t understand fatigue before I experienced it. Learning to pace myself, which has got easier over time – the bathroom is never clean at the same time, the bath is cleaned one day, the sink on another and the toilet another day. My body has ached right the way through and still does. I had frightening, what I call ‘lungstabbing’ pains and breathlessness in April, when I ended up having a chest x-ray and bloods to be referred to the long Covid assessment clinic. Going forward, my concentration levels and brain fog concern me, as I am desperate to return to work. I am currently on a therapeutic return. The after-effects of working for just a few hours at a time are low-concentration for reading or hobbies for the whole following day. The psychological effects of my own fears have been; accepting the ‘new me’ postCovid, and the pressure I have put on myself to try and manage, whether I would lose my job because this has happened to me, and going form socialising most nights before the pandemic, to not going out at all except for a short walk to the local farm.” David: “How have you been supported by the people around you?” Karen: “I am fortunate to have a very loving husband and very good friendships. I am blessed with other friends who have experienced fatigue themselves or have close family members. I have also been supported by good neighbours. I have been grateful to my work colleagues who have supported me. I am still very embarrassed that I have been off work for so long. Only this week have I met a friend in a café a couple of minutes away. They wanted to see me and I realised that I would put pressure on myself to have an immaculate cottage, so to eliminate that, meeting elsewhere reduced the pressure I put on myself – I needed to recognise my limitations.” David: “and what do you want the professionals like GPs to do?” Karen: “I have been very fortunate myself, and maybe because I’m in the second wave, that my GP was understanding and sent me to the long Covid assessment clinic within 3 weeks. Initially the GP surgery was signing me off for a week at a time. I think because I was determined to go back to work and said so, they didn’t realise how unwell I was, and that I wasn’t functioning well. It helped when a GP took charge and gave me a month off. Only then did I start to worry about work less, and focus on my recovery. I felt the services I was referred onto in the long Covid assessment clinic all helped me in the best way they could. I didn’t hear from the pain clinic, which I reported at my follow up appointment with the long Covid clinic assessment but have decided to try and manage that myself.” 3 | Suffolk and North East Essex Integrated Care System

Lived experience - Long Covid Support - Jo Dainow “I am Jo, I am 55 years old, I was what I consider to be very, very healthy pre-covid. I got covid prelockdown, so I have had it since 6th March 2020. It started with very basic symptoms: I started going hot and cold and then that disappeared, and I didn’t think anything much of it – I thought it could be my age. Six days later I then got the full on ‘flu type symptoms: Ear ache; tinnitus; toothache; cough; chills; loss of taste; tight chest (I felt like there was an elephant on my chest); aching limbs; sore throat; a tight feeling around my throat which we now call covid strangle; headaches and rapid heart rate. I had that for about ten days and then it started disappearing and I was thinking ‘I’m over this’ and I was relatively ok for a couple of weeks and I just got back to the normal stuff of painting and gardening – by that point we were in lockdown. I then crashed completely; with two nights where I was very concerned, having spoken to 111, and their response was to tell me to phone 999 if your lips turn blue. Then really that was it, it was a stay at home order, so I was isolated, with my partner. He’d had covid, he got over it very quickly. I actually care for him as my job, so I couldn’t care for him, he had to care for me. Then the full-on symptoms came, and it is absolutely from head to toe. I’d had ‘flu before but this was nothing like ‘flu: Tingling; vibrations; tinnitus; pulsing pains through my body; I had tendonitis; bruising; calf pain; a tingling head, I lost my vision; I was light headed; aching upper-arms and legs and crushing fatigue. When anybody says they’re tired it is nothing like this kind of fatigue – it’s like your blood stops pumping in your body! I had cognitive dysfunction, which I still have now and have to write everything down. Weirdly, I had most of my pains on the left side of my body – it was very much like a shingles type reaction, like a nerve pain. If I did anything; if I stood up to go and have a shower, or do the washing up, I would just feel as though I were going to drop down; I was completely and utterly winded the whole time. We call it a game of snakes and ladders in that you start feeling better and then you get worse again. It’s called ‘the corona-coaster’. I am part of the long covid support group, who have been absolutely amazing. We started in the number of days that we’d had it for, then it turned into the number of months and I’m 19 months now – so a year and a half. For months and months, I had the dizziness, and I’d have two weeks where I was fine, and then all of a sudden something would happen, and I don’t know what that trigger was. I’m left with quite a lot of cognitive dysfunction and I still can’t concentrate – I can’t read a book; I haven’t read a book for 19 months. I can just about watch a television programme. A zoom type call can affect me quite badly; I’ve been on conferences all day and I can feel my body crashing now. It’s a physical and a mental exhaustion and there are elements that we know are post-viral. With regards to what is happening in our support groups, there are children that are getting it, from six months old. Children haven’t gone back to school, there are children in wheelchairs, in hospital – they’re collapsing. We’ve got teenagers – older teenagers haven’t gone back to university. There are healthcare workers, teachers. Every type of life that people have led before has been put on hold, and bearing in mind our support group supports 45,000 people around the world and we’re not even capturing half of it. We are all about reach and how we get to everybody. It is really important, these support groups are putting patients at the forefront of this. The name long covid was coined by people with long covid – they named it, and that’s really important to us because ultimately, only we know what we are experiencing. We are very lucky that we’ve got these support groups that we can go to because to begin with, we didn’t have a positive test; there wasn’t testing when I first got it. I didn’t have any antibodies, and I didn’t get believed by my GP to begin with. I spoke to three GPs and it was only the final one that actually worked in ICU and had seen what was happening, where actually the realisation came that this is a clinical diagnosis of what was called post-covid syndrome at the time. My blood tests were all normal, scans all normal: I went to ENT, I went to Neurology, and everything came back normal. Physiologically, it is still very difficult to understand. With long Covid Support we’ve got a research team, we’ve got an employment team and an advocacy team. We’ve got peer support, we’ve got a choir and we do ‘opera breathing’, we are trying to look after people’s wellbeing but we know that we can’t do all that testing, micro-clots, autonomic dysfunction etc, we can only be there for people and offering support. That’s my story – it’s a long story and we thought at the beginning when all we saw in the news was that you might have it for two-weeks, and all we saw in the news was those three symptoms and since then it's evolved and that is one of our biggest frustrations; the fact that actually we could do with publicising how many symptoms you can have – there are over 200 symptoms that have been reported with long Covid. It’s not dissimilar to other post-viral diseases but we know that long Covid has followed a single viral infection and pandemic. We are really pleased that we are at the forefront and hoping to change things for other health conditions as well”. Access further information and resources by clicking on these links: Long Covid Support Long Covid Support information leaflet Long Covid Kids Thinking Differently Together | 4

4. How research is helping us to understand the story Professor Colin Martin, Professor of Clinical Psychobiology and Applied Psychoneuroimmunology, University of Suffolk Speaker: Colin shared with us some of the research he has been doing on post viral syndromes over the years that have an implication for long Covid. He explained that he had conducted research in Hong Kong on the SARS outbreak that occurred in 2003-04, where there were some signs of a post-viral syndrome being identified. One of the reasons he had become interested in the work in Hong Kong was because of other work conducted in relation to Chronic Fatigue Syndrome (CFS) - also known as Myalgic Encephalomyelitis (ME). There were a number of lessons learned in terms of the symptoms experienced, and the responses from the health practitioners and providers at the time that were much more diffuse – there were discussions on whether it was a genuine post viral illness or not, or another kind of phenomena, perhaps a mental health or neurological issue, and much confusion about the presentation and differing perspectives. Colin felt his journey changed from viewing it initially as a problem that was probably post-viral but with high levels of mental ill health and depression, to it being clearly a condition that is related to viral infection. Research papers over the years have been looking more at the work that has been going on in understanding the effect on the brain and examining how it may be an autoimmune condition, like fibromyalgia. Recent advances in research have looked at CFS symptoms, which are very similar to long Covid, and compared them to fibromyalgia which is seen very much as an immune disorder (generally speaking people with fibromyalgia may be treated by a rheumatologist). The findings showed that this looks like a similar underlying disorder; a post-viral autoimmune condition, and the recently published BMJ paper provides a template for the model of long Covid. As a post viral illness long Covid has a myriad of symptoms, and what is being done in terms of clinical services, is catching up with long Covid’s presentation. This is important to give patients a sense of therapeutic optimism, as it means we are catching up with what can be done to meaningfully intervene and help and support patients who are presenting with it. Colin explained that the heritage of research over the last twenty years in terms of post viral illness, based on the experience of people with CFS and post-viral illness, creates some expectations researchers may have of what symptoms patients may experience. For example, not only are there a myriad of physical symptoms that patients report, but also for any condition that seems to go on for a long length of time, there is often anxiety, depression and similar issues that often mirror the experience of a physical illness. What is also seen in previous experience of post viral illnesses, is that different groups start to emerge as well. As an example, what may be seen in long Covid clinics is the more severe condition with post viral illness. There are also likely to be other groups as well with less severe illness – people that have experienced Covid, have recovered, but haven’t recovered 100% - they may still be able to go to work, they may still be able to engage more generally in activities of everyday living, but don’t feel 100% well and still have a recovery cycle that is actually quite elongated over time. Another important lesson learned from other post-viral illnesses is that quite often two groups of patients are seen; differentiated between those that recover in a slow but steady recovery in a period over a 1-2 years and another smaller group who have a much longer period of recovery. A very important reflection on the research over the last 20 years is that generally speaking, where there is an absence of evidence, there are attitudes, opinions and beliefs about presentations that we don’t fully understand. Again, it is useful to understand what we have learned about post viral illnesses which look incredibly similar to long Covid seems to be, and that is the genuineness of the presentations, symptoms experienced by the patients and the trajectory of the recovery from illness and groups within it. Therefore although some may consider that long Covid is new and we don’t know much about it, that is only true in one sense, but as we don know a lot about post viral illnesses and the lessons learned do seem to be able to be applied and overlapped with the experience of long Covid. Understanding Chronic Post Viral Illness 5 | Suffolk and North East Essex Integrated Care System

Dr Richard Smith, Director of Research, East Suffolk and North East Essex Foundation Trust (ESNEFT) Speaker: Richard explained that the starting point for the programme was with an aim to improve and increase the number of home-grown independent academic work at ESNEFT. The aim is to find a foundation to fill the knowledge vacuum with regard to the understanding of long Covid and what it is so we can make a difference in our understanding and treatment of long Covid. There is a team in place to develop academic projects at the Trust that is focused on Allied Health professionals. The work is based on long Covid, and although there are lots of people doing work on long Covid the location of ESNEFT as a Trust gives the opportunity to focus on the incidence of Covid in a geographically defined area, with a defined patient population, so bias is reduced, and the ability to map other data on this population such as the incidence of positive PCR tests. Other benefits are that there is access into the Suffolk & North-East Essex Long COVID Assessment Service (SNELCAS) Pathway – this overcomes the problem of it only being hospitalised patients, and includes anybody who GPs feel have Covid and have gone on to develop long Covid whether or not there is a positive PCR test. A further benefit is a defined pathway for diagnoses and referral of patients with long Covid. From last March when we saw the beginnings of the pandemic, professor Martin shared that his first thoughts were, based on his experience of 20 years of research, that he would anticipate seeing something that looks like long Covid merging over the following months, which is exactly what has been seen. What is good about that is that it enables researchers to start making predictions, and therefore start intervening earlier than may have been done with other post-viral illnesses in the past. In terms of therapeutic optimism, the amount of resource that has been put into Covid and long Covid as a result of the size of the pandemic is sizeable. Colin contrasted this with the research that he had been conducting for many years on Zika virus, a virus which has been around for a lot longer and for which there is still not an effective licensed vaccine. This difference is largely due to the size of the pandemic and the focus of the resource put into working to find therapeutic solutions. This is likely to follow, in turn, for long Covid. McCue, P., Buchanan, T. and Martin, C.R. (2006). Screening for psychological distress using internet administration of the Hospital Anxiety and Depression Scale (HADS) in individuals with chronic fatigue syndrome: WestminsterResearch in British Journal of Clinical Psychology, 45, 483-498 Christley, Y., Duffy, T. and Martin, C.R. (2012). A review of the definitional criteria for chronic fatigue syndrome | Request PDF (researchgate.net) in Journal of Evaluation in Clinical Practice, 18, 25-31. Christley, Y., Duffy, T., Everall, I.P. and Martin, C.R. (2013). (PDF) The Neuropsychiatric and Neuropsychological Features of Chronic Fatigue Syndrome: Revisiting the Enigma (researchgate.net) in Current Psychiatry Reports, 15, 353. doi: 10.1007/s11920-013-0353-8. Larkin, D. and Martin, C.R. (2017). The interface between chronic fatigue syndrome and depression: A psychobiological and neurophysiological conundrum - ScienceDirect in Neurophysiologie Clinique / Clinical Neurophysiology, 47(2), 123-129. doi: 10.1016/j. neucli.2017.01.012. References and further reading The impact of long Covid on everyday life McKay, P.G., Martin, C.R., Fleming, M.P. and Walker, H. (2019). Chronic fatigue syndrome (CFS)/ Myalgic Encephalomyelitis (ME) and Fibromyalgia (FM): the foundation of a relationship - Pamela G Mckay, Colin R Martin, Helen Walker, Mick Fleming, 2021 (sagepub.com) in British Journal of Pain, doi. org/10.1177/2049463719875164 Walker, H., Martin, C.R. and Fleming, M.P. (2021). An exploratory Study into the relationship between the symptoms of Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyelitis (ME) and Fibromyalgia (FM). BMJ Open, 11:e041947. doi:10.1136/bmjopen-2020-041947 e041947.full.pdf (bmj.com) Thinking Differently Together | 6

A further challenge with long Covid is that it incorporates a wide range of symptoms including depression, Post-traumatic stress disorder, pulmonary pathology, cardiac pathology and a whole spectrum of other issues. There is a need to define what the spectrum of long Covid truly represents, and collaboration with Professor Colin Martin and Dr. Hiyam Al-Jabr, Research Associate with the Integrated Care Academy, both at the University of Suffolk, and with colleagues at the University of Essex, helps to enable that. The aim is for the ESENFT team to collect the clinical data and work in collaboration to understand more about Covid. The project aims to describe the symptoms of study participants with long Covid, up to three years from illness onset. Within this, it will describe the impact of these symptoms and the needs of the patients affected, identify risk factors for the development of long Covid, identify different symptom groups and compare the symptoms of people with long Covid with the symptoms of people with other long term conditions. The clinical services are very much embedded within the project and are part of the trial management group which should help enable the rapid feedback of learning from the project to allow the services to improve the care for patients with long Covid quickly. Richard explained that people come into this study through the SNELCAS pathway, which is important as it minimises bias, in that it incorporates anybody that a GP thinks has Covid and meet the criteria, whether or not they have had a PCR test. As the study is on a whole system geographical footprint, it allows for the study to call on data that is already available on the incidence of PCR positivity, Covid diagnosis and hospital admissions. It also allows for comment on the people that do not want to come into the study which means there is transparency about the population that has been available to study. The symptom profile and natural history will be defined, and this should in turn optimise triage and the ability to support patients with appropriate services. It will also look at the heterogeneity and compare with chronic diseases such as Fibromyalgia and Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS /ME). The project has a trial management group with a wide involvement and incorporating a wide group of professionals including Speech and language therapy, physiotherapy, medicine, management, Integrated Care System, academics (from University of Suffolk), patients and other clinicians. The project uses a questionnaire-based methodology. They are administered 3 monthly for 18 months, then 6 monthly until 3 years after illness onset. The questionnaires use a range of self-reported measures and validated scales to capture severity of symptoms and impact of these symptoms on people’s lives. The questionnaires are administered over the telephone, with a member of the research team to help guide the participant through the questions. The study commenced recruitment on 24th August 2021 and 130 people have been referred into the study, with more than 40 questionnaires administered. Participants are keen to tell their story and have their voices heard and are comprised of people who are predominantly individuals presenting with fatigue and cognitive difficulties. Everyone participating is taken through three measures: • EQ5D5L • Post COVID-19 Functional Scale • Clinical Frailty Score These allow the researchers to define the impact of long Covid, and so far the team have reported that people have shown a significant impact of long Covid for all of those scales; with scores on the first two having gone down and scores for the clinical frailty scale going up. After assessment through these scales, researchers are able to then pick from a further suite of scales the ones that are relevant to each individual person, based on the symptoms and impact that they are experiencing due to their long Covid: • MRC Dyspnoea scale • Basic Fatigue Inventory • NeuroQoL Cognitive Function • Voice Handicap Index (VHI 10) • Eating Assessment Tool (EAT-10) • S implified Nutritional Appetite Questionnaire (SNAQ) • PHQ9 and GAD7 In summary, the project is up and running. The data collected maps onto the ICS footprint central to this work, which allows the findings to map back onto pathways for the same patient population and allow a real-time impact. Collaboration with clinical partners and academic partners is central to this work also. Completeness of dataset is essential for the success of this work and although it is early days, the work is already painting a picture of the reality of long Covid. East Suffolk and North Essex NHS Foundation Trust 7 | Suffolk and North East Essex Integrated Care System

Dr. Hiyam Al-Jabr, Research Associate – Integrated Care Academy, University of Suffolk Speaker: Hiyam spoke to us about a trial that is being conducted through the Integrated Care Academy at the University of Suffolk. We know that since the start of the pandemic in 2019, the number of people affected has been increasing: Across the world there have been more than 252 million cases confirmed, of which more than 9 million have been in the UK. Figures also indicate that there are more than 2 million people who have long Covid in the UK. Symptoms of long Covid vary greatly between individuals. Long Covid has been described as a multi-system disease, affecting different areas of the body. There have been more than 200 symptoms reported that are associated with it. The most commonly reported ones include: fatigue, symptoms related to the nervous system, such as brain fog and dizziness; symptoms related to the respiratory system and chest, cough and breathlessness; some other symptoms related to the GI tract, so there is a great variability between the presenting symptoms and this adds more of a challenge to the diagnosing of the condition. We all know that until now there has been no fixed test for an individual to do that will confirm whether they have long Covid or not, so diagnosis is mostly based on excluding other conditions. There is a need to provide people with an alternative support, to provide an integrated support to help them mitigate the symptoms they have for long Covid. The research team has been built in the Integrated Care Academy to deliver a trial with a programme to help people with long Covid. Hiyam explained that the team has been drawn from different areas: In the UK, it includes herself, Professor Chantal Ski and Dr Karen Windle from the University of Suffolk, they also have Professor David Thompson of Queen’s University Belfast; Ms Zoe Jenkins from St Vincent’s Hospital in Australia and Professor David Castle of the University of Toronto in Canada. The aim of this trial is to provide people with support to eventually improve their physical and mental wellbeing, and the objectives are to identify the feasibility of delivering the programme and the acceptability of the programme to participants, as well as to identify the efficacy of the programme on improving outcomes in anxiety, depression, fatigue, self-efficacy and overall quality of life. This study is a clinical trial. Participants will be initially identified by the research team at East Suffolk and North Essex Foundation Trust, and once they consent to the study, they will be randomised into an intervention group and a control group. The control group will receive usual care and the intervention group will receive the usual care, plus the long Covid Optimal Health Programme (LC OHP). The Optimal Health Programme is not a new programme; it has been designed and used for more than 15 years now. It has been successfully used with other chronic medical conditions such as diabetes, chronic kidney disease and substance abuse, and the research team saw that it might be helpful to use for people with long Covid, so the programme has been adopted to this population of people. The programme itself is highly flexible. It can be delivered online, by telephone or face to face; it can be delivered in a one to one session or in a group session and it is dependent entirely on the preferences and needs of each individual participant. Developing an Optimal Health Programme for People with Long Covid COVID Prof Chantal Ski, University of Suffolk, UK Dr Hiyam Al-Jabr University of Suffolk, UK Dr Karen Windle Suffolk, UK Prof David Thompson, Queen's University, Belfast, UK Ms. Zoe Jenkins, St Vincent's Hospital, Australia Prof David Castle, University of Toronto, Canada Thinking Differently Together | 8

The programme is delivered in weekly sessions. It can be delivered in as minimal as five sessions – one session per week, or as maximum of nine or ten sessions, but for this population of people and considering that fatigue is the most reported manifestation, the team decided that a minimum of five session is enough. The programme is focussing on different areas: In the first session it will focus on optimal health of the individual. The second session will identify the strengths and vulnerabilities of each individual, what stresses they encounter, how they interact with these stresses and whether there are other strategies and other things they can do that would be more effective than what they usually do. The third session is focussing on identifying factors of wellbeing; identifying the resources an individual has outside the environment of care, identifying their habits, eating habits and exercise. The fourth session is about visioning and goal setting where they put together all that has been learned so far, and identify what patients want to do or want to change. Most patients will want to have their life back, as it used to be before Covid, which is a reasonable and valid goal, but it is big on its own so we need to break it down into smaller, achievable chunks that an individual can do and focus on. All of these smaller chunks then come together to the bigger goal of where they want to be or what they want to do. The fifth and final session is on building health plans. This is actually one of the strongest tools the programme is using, to build a health plan that is entirely individualised for the participant. It is based on what the participant knows about themselves, about the environment, about the people around them, and to identify when they are facing a certain condition, if they need help, where they can get it from, and acknowledging the resources they have both inside themselves and outside. The programme also highlights the importance of acknowledging what they can do and what they can’t do and using the resources they have both within and outside of themselves for this. There is an additional booster session that is focused on identifying the progress of the participant with the programme. The session is held three months after the fifth session, for the team to know where the participant is and how they are progressing so far with the programme, and to celebrate the achievements. Besides the programme, all participants in both arms will complete a number of questionnaires at designated times. There is a questionnaire to be completed at baseline, and then questionnaires to be completed at three months and six months post-randomisation. That is to help the researchers identify the effects of the programme between both arms of the study. They are also looking forward to interviewing participants in the intervention group to identify their views of the programme and whether they suggest any improvements to make it suitable for other participants. Should the findings indicate positive changes researchers will then use the data from this trial to develop a trial for the wider community. There are two sets of outcomes from the study: Primary outcomes identify retention and recruitment rate of the study, acceptability and satisfaction with the programme. Secondary outcomes are to identify the effects of the programme on the fatigue, anxiety, depression, quality of life and self-efficacy. The researchers wan to identify whether it has been effective, or whether it didn’t have any effect. They are hoping that the programme will decrease anxiety, depression and will improve self-efficacy and the overall quality of life. The three key messages are: • T hat there is a significant mental health burden induced by long Covid and this need is arising within the healthcare system that is already facing different challenges. • T here is a rising need to support physical and mental wellbeing of people with long Covid • R esearchers are proposing that the Long Covid Optimal Health Programme can provide holistic support. It is a programme that provides a holistic, person-centred individual support and is completely in line with the NHS plan and NICE guidelines. 9 | Suffolk and North East Essex Integrated Care System

4. How we can work together to make a difference Lisa Wilson, Head of Strategic Commissioning and Policy, Essex County Council Speaker: Lisa explained that Essex County Council has been working across three local Integrated Care Systems since May 2020 to work together across health and social care in a joined up practical way, to support people with their emerging needs around long Covid. We focused on ideas around supporting rehabilitation in a holistic way, looking at people’s wide range of needs. The graphs below, from the Health Foundation, show that long Covid particularly impacts people in the most deprived areas and on those with pre-existing conditions. How we need to support people with long Covid in our Communities There is further information that can be followed about the study on the Integrated Care Academy page on the University of Suffolk website; their Twitter feed, YouTube channel and LinkedIn page. For any further information or specific questions, the research team may be contacted through: E-mail to Dr Hiyam Al-Jabr on: h.al-jabr@uos.ac.uk Or contact the Integrated Care Academy on: ica@uos.ac.uk Hiyam: Long Covid seems to affect females more than males. Recent NICE guidelines emphasise the need to inform people about the importance of having the Covid vaccination; there is no evidence that it will decrease symptoms but it is still important to have the vaccination. Colin: It is still early days, so it is really important that we are confident about the data that we get details on these key background variables right, particularly when we are talking about significant immune system involvement. We need to be able to describe the population accurately so that we don’t make mistakes we might have made in the past in postviral illnesses. Tristan: The Office for National Statistics’ Covid-19 infection survey provides some early indications of which groups are more impacted, but we have a long way to go in our learning. Question: Does long Covid affect any particular communities or groups of people more than others? Source: Source: ONS, Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 1 April 2021. The data is based on self-reported long COVID status based on a follow-up to a positive test in the ONS infection survey after four weeks. 1 (most deprived) 2 3 4 5 (least deprived) Long COVID prevalence in the population by area deprivation n Over 12 weeks n 4-12 week duration 2.4% 2.2% 2% 1.8% 1.6% 1.4% 1.2% 1% 0.8% 0.6% 0.4% 0.2% 0% Long COVID prevalence in the population by per-existing health n Over 12 weeks n 4-12 week duration 4.5% 4% 3.5% 3% 2.5% 2% 1.5% 1% 0.5% 0 No pre-existing health conditions Activity not limited by health conditions Activity limited a little by health conditions Activity limited a lot by health conditions ©2021 Thinking Differently Together | 10

Data available from the Office for National Statistics (ONS) also shows that long Covid has impacted nationally in particular on those working in key frontline roles during the pandemic, including health and care, government, teaching, hospitality and food production and agriculture. Our starting point to understand what may work focussed on lived experience, and we engaged our research partner Revealing Reality to build on previous work exploring the lived experiences of those with Physical Impairments and Disability. The research aimed to explore the support needs of these groups and highlight opportunities for positive change that could enable people with conditions such as long Covid to live enjoyable and fulfilling lives. Group 1: People who acquired a Physical Impairment after having Covid-19. Two people were interviewed in September 2020 before long Covid was fully defined as a condition, so they did not define themselves as having it, but their conditions may now be considered as part of long Covid. • Those interviewed are struggling under the same health and care systems and with the same barriers as those with pre-existing conditions. • Their day-to-day routine, working lives, and aspirations for the future were heavily impacted, and both experienced a sudden reliance on family members. • They felt more support was needed to adapt to their new condition, as both had struggled to come to terms with the sudden changes to their lives and identity. “It left me with a hard feeling inside my head towards other people at times, that isn’t me, that wasn’t me before COVID, I think COVID has done that to me” Group 2: People currently experiencing long Covid. Three people were interviewed who were now struggling with the ongoing physical, cognitive and psychological symptoms of long Covid. This group had accessed the assessment clinics in Essex. • People didn’t think their friends and family ‘understood’ and would even avoid seeing them because they didn’t want to talk about their situation or have to explain that they may need to leave early (due to fatigue). “When I say I can’t come because of fatigue people think I am being lazy, but I can’t explain it to people, they just think ‘you’re just tired… have a red bull.” • People really valued the support they got in the long Covid clinics, especially peer to peer interaction and fatigue management, but worried about a lack of long-term support. Read the Living in Essex during the COVID pandemic report HERE “Being able to talk to people who are going through similar situation… they can understand you and you feel comfortable sharing anything, or just crying.” • They appreciated talks from clinicians to help them understand their condition and answer their questions. The fatigue management courses gave them tools such as activity diaries to enable them to better ‘manage exhaustion’ and make plans. “I don’t know if I would be here now if it wasn’t for that support. It woke me up into a better understanding of how to manage and maintain my condition. It is still a struggle but you need that support.” • People felt guilty about their family members having to support them more. “It was eye-opening for me; I would’ve said ‘just get on with it’ if I had heard it from someone else.” • People were often surprised by how limiting their symptoms were and struggled to accept that they couldn’t maintain their previous hobbies and work. • Although most were hopeful that symptoms would improve over time, people struggled with the uncertainty of the future. • People mentioned a lack of support (beyond the long Covid clinic)—with other health and care professionals being unable to give them answers and support. “They [GP] don’t know what to do, they just said don’t do too much, sleep and drink a lot of water.” 11 | Suffolk and North East Essex Integrated Care System

Sarah Fowler, Suffolk and North East Essex long Covid Clinical Assessment Team, East Suffolk and North Essex NHS Foundation Trust Speaker: Sarah explained that the service was set up at pace, and went live in December 2020, and has received 878 referrals to date. All referrals come through a single point of access from GPs alongside the Yorkshire Screening Tool, a nationally recognised tool for post Covid symptoms; a positive PCR or antibody test is not required. The Care Coordination team manages the service with strong administrative support, so the clinicians are freed up as much as possible to spend time with patients. Initially the service was set up to provide assessments, give advice and information and refer onto existing services. In summer 2021 further funding enabled the service to be extended to providing interventions directly. Now, a one hour Initial Assessment is carried out (by telephone or face to face if the patient prefers) to gather information about the person’s symptoms, the impact of long Covid on their lives, and to learn what is important to them, as well as offering advice and signposting to support. The ‘Living With’ app, developed with specialist input, is also offered to the patient, which includes several programmes including fatigue management and breathing pattern retraining, and gives them a direct messaging facility to the team. Patients are discussed at regular MultiDisciplinary Team meetings, which includes input by GP, Physiotherapy, Speech & Language Therapy, the Chronic Fatigue Service, Mental Health and others. The team reviews the patient and identifies any needs for further investigations or onward referrals to other partners, for example respiratory physiotherapy, Chronic Fatigue Service, IAPT, and social prescribing. We refer to the English National Opera’s virtual programme using singing to help with breath control, which is very popular. We can also refer to physical activity, to Allied Health Professionals at One Life Suffolk, and further appropriate opportunities are coming on stream soon. We follow up at patients 3 and 6 months, and ongoing via the app. We use a range of evaluation methods, including the Post Covid Functional Scale, ED-5Q, the CARE measure of e.g. how much the patient was involved in goal setting and empathy shown to the patient (86% rated us Excellent or Very Good), and the Friends and Family measure which has been adapted to add two questions about long Covid (in October 2021, 19 of 21 respondents rated us Very Good or Good). The chart above shows patient feedback in September 2021, based on 35 responses. We are involved in research with ESNEFT, University of Suffolk and Anglia Ruskin University, including those already discussed elsewhere in this report. We are planning a wider evaluation with Public Health Suffolk to explore the views of referrers and service Supporting people with post viral illness Long Covid has an impact on wider socio-economic aspects of people’s lives, so it is key that people are able to access early support beyond clinical interventions. Those with long Covid may not be eligible for support from Adult Social Care, but we do have a role in working with partners to prevent, reduce and delay people needing our support in the future. We are recruiting Social Care Occupational Therapists (OT) to support rehabilitation – hosted by us, reaching into each local long Covid Assessment Multi-Disciplinary Team (MDT). Recruitment is underway and agreements are being put in place with long Covid providers in each ICS. We are taking a 12-month project approach as new ICS arrangements/ funding approaches develop. We will evaluate our approach using data and insight gathered and ECC funding external research/evaluation. Our learning will feed into future approaches. n Poor n Fair n Good n Very Good n Excellent n Does not apply Overall Responses Thinking Differently Together | 12

Carol Eagles, Chief Officer, Citizens Advice West Suffolk The economic challenges of living with long Covid Speaker: Carol explained that Citizens Advice in Ipswich, Colchester and West Suffolk have created a new partnership with the long Covid clinics across Suffolk and North East Essex. Our role will be to work with the long Covid Assessment Teams in each area to support with the non-clinical issues affecting people with long Covid. Citizens Advice is a charity providing free, independent, confidential and impartial advice and information to anyone experiencing social welfare issues, primarily benefits, debt, employment, or housing, for example. We have a strong track record, in the last year Citizens Advice services have helped 32,000 people across Suffolk and North East Essex, with over 116,000 issues. In West Suffolk, we have been working with the MS Society’s nurses and local MS groups since 2008 to provide advice and support to families affected by Multiple Sclerosis. Initially the service was funded by the national MS Society, but it was so valuable that the local branches have continued to fund it. Initially we thought people’s main issue would be debt, but the issues were around benefits, housing and relationships. We are using the learning from this project within the new long Covid service. Employment: There may be issues with employers’ rights and responsibilities. While some employers will be supportive, not all will be, so we can help look at what the employment contract includes on issues such as sick pay, and we can help people obtain ‘fit notes’ from their GPs. If people are looking to return to work, we can help explore flexible working opportunities. The employer has a duty to make reasonable adjustments to the workplace to enable people to continue to work, and users, which we hope to complete before the end of March 2022. And we are also involved in the national evaluations of the ‘Living With’ app and English National Opera programme. Within recent weeks social prescribers have joined our team, and a care co-ordinator role will be commencing soon to help patients, particularly those with multiple services involved, to navigate the system. We also have three social prescribers who will help to link patients who have brain fog or isolation with existing services and also to help with the wider impact such as finances, relationships and returning to work - we want to provide much more structured support around vocational rehabilitation. Our service will continue to develop. We have a patient support group, and virtual group offers will start in November 2021. Specialist groups will be offered from December 2021 in Chronic Fatigue and respiratory physiotherapy for those that need greater level of input. In January 2022 we will start a group programme after initial assessment to reduce waits for patients and positively impact the number of onward referrals. We are also putting together a sleep programme with Suffolk Mind. Finally, our service webpage (on the ESNEFT website) is due to go live very soon. “Felt it was a comprehensive assessment, professional approach and such a relief to talk through my symptoms and experience and options going forward both self help and further assessments etc. Thank you to the assessor and the team “ “I felt for the first time in a long while that my concerns were being listened to and taken into consideration before any further treatment was suggested. Thank you.” “Reassured me that my symptoms and experiences are common with others. I offered to be involved in the setting up of a local support group; as sharing experiences with others is invaluable.” “So far I have not had the necessary support and follow-up, mainly from my GP and despite having more information about my disease from other medical teams, I have been ignored and they do not help me to improve my health and they don't give me solutions either. I am completely alone.” “I wish there was a peer support group for health professionals.” “I cannot thank you all enough for helping me get back on my feet and start to enjoy life again. “ East Suffolk and North Essex NHS Foundation Trust 13 | Suffolk and North East Essex Integrated Care System

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