Dean Russell: Thank you for joining us, Mr Fisher. I have a few questions, similar to those that were put to the previous witness. Would you mind giving us the context? Could you start by telling a little about what it is like living with long Covid?
Lere Fisher: The first thing is not being believed. We can talk about symptoms and the effect on your health, but it is also about the effect on your mental health. It is not feeling that you are taken seriously. I will go through a bit of my story. The biggest health challenge when I contracted Covid on 20 March 2020 was that I slept for about 16 hours. I had chronic fatigue and the worst headache ever. I knew that this was not flu. It was something a lot more serious. At the time, with the pandemic, the whole world was in that situation, so I knew that it was Covid. I experienced delirium, chest pains—dull aches in the chest—and brain fog. It is a situation where you cannot plan, not even the next day, sometimes not even the afternoon, and sometimes not even the hours ahead. We could be having a conversation like this and then, within five minutes, I would need to go and lie down and sleep for a few hours. Quite often, there was a continuation. When I woke up in the morning, I might have four symptoms. I would probably have chest pains and a few other things. By the afternoon that could change. No two days were the same, and probably no two half-days were the same.
Q75 Dean Russell: Would you mind talking about the very early stages? What were your initial symptoms? What got you to seek treatment for them?
Lere Fisher: The first was chronic fatigue. That was the big one. I had severe headaches, nausea and stomach cramps. I did not cough once. I did not have a sore throat at all. Those were the first symptoms that I had. With that, I rested and self-isolated for about 10 days, maybe two weeks. After that period, I went for a walk. It was not a long walk, but by the time I got in I literally felt like I was going to collapse. I had a burning sensation in my chest. I felt I was going to collapse, so I called the ambulance and they came out. At that point, they diagnosed me as having Covid.
Q76 Dean Russell: In terms of seeking treatment, what has it been like so far, both in the early stages and as time has gone on?
Lere Fisher: Absolutely horrendous. It is probably based on the fact that, at the time, tests were only given to frontline workers. We weren’t allowed to have any tests at the beginning. Because I was not allowed to have any tests at the beginning, that set a precedent for the help that I got further on. It was as if I was not believed: “Are you telling the truth? You think you have Covid, but I am assured that you don’t.” When I spoke to my GP, they actually laughed when I said, “These are my symptoms, and this is what I believe that I have.” I was told to have paracetamol and to drink a glass of water. I was not offered any form of referral or any other advice, or anything other than that, to be honest.
Q77 Dean Russell: From what you have said, it was difficult to access care and you were not particularly supported by the NHS in attempting to get that.
Lere Fisher: Correct.
Q78 Dean Russell: I am sorry to hear that. What, if anything, would you say went well throughout that process?
Lere Fisher: The thing that went well was support groups— LongCovidSOS. That was when I realised that there were other people who were feeling the same as I was feeling. At the time, I thought it was just me, because I was part of that first batch. I had to do my own research, only to find that there was a whole community of people experiencing exactly the same as I was experiencing, but not getting the same help that I was getting.
Q79 Dean Russell: Is it correct to say that those support groups were outside the NHS?
Lere Fisher: Correct.
Q80 Dean Russell: What, if anything, could the NHS have done better to support you? It sounds like access to support groups would be one thing. Are there other things that you would recommend?
Lere Fisher: I always say, “Listen.” I am 47 years old. When I am sick, I know that I am sick and can probably explain the sickness that I have. I am not a medical expert of any kind, but I quite often know what I am feeling. If I do not know what I am feeling, that is an opportunity to listen and to go a bit deeper, to find out why I am feeling that way. What are the symptoms that are unusual?
Q81 Dean Russell: We heard from the previous witness that not being believed was one of the biggest challenges. From your experience with the NHS in terms of support, did you have the same sense that the frustration of not being believed or understood was as bad as having long Covid?
Lere Fisher: Yes, it was. There was no face-to-face care. Without faceto-face care, you cannot see me visually, to see how I look. I cannot even say that it was frustration. It was like a fight—a fight to be heard. Trying to get a call back was very difficult. In the end, when I had an antibodies test, which came back negative because it was so far away from when I first contracted Covid, I was referred to a chronic fatigue syndrome clinic. I think there was a lot of gaslighting through that whole period. When I contacted them again to find out what was going on with the clinic, I was told that there was no funding for it and that the only thing they could offer me was counselling.
Q82 Dean Russell: I see. Obviously, it has had a massive impact on your health. Beyond that, what other impact has it had on your life? Please feel free to mention the health impacts, but I am interested to know what this has meant for you as an individual, for your family and friends, and for your career.
Lere Fisher: It has been absolutely major. I am a learning development consultant—a speaker, host and presenter—so I spend a lot of time on my feet speaking, talking and delivering. This made it impossible. I did not have the energy and capability to do that, which affected my income. That meant that I had to move in with my parents. I was not able to drive. I have not driven for the last 18 months. I could not afford so many things. I had to go on to benefits. I was bedridden. It completely affected my whole life and my income, to put it mildly.
Q83 Dean Russell: Thank you for sharing that. I know that it must be difficult. In this inquiry, we are keen to understand what can be improved. Could you give me two or three recommendations we should be looking at and recommending as part of our work?
Lere Fisher: Yes. There are a few things. One is about the pathway. For example, when I could not get through to the GP, they said, “Go online.” Each time I went online, it led me up blind alleys. You are pushing buttons to try to find out which is the best way of getting information, but at the end it says, “Okay, you’re having a heart attack. We need to get an ambulance out for you.” No, I am not having a heart attack, but those are my symptoms. That pathway online definitely did not help. The pathway of having a conversation with the GP did not help. Also, I should not have to go private just to get help. If you do not have the money to be able to afford to go private, where does that leave you? The last thing is that I am probably at a stage where I am 85% or 90% back to full health, but I am still living with long Covid. I should not have to be forgotten at this stage. I have had to nurse myself back to health, but what does the future look like? I do not know. I do not know whether I have internal damage. I do not know whether it is going to have any effect on my life in five or 10 years. Is my body resetting? I do not know. I should not be forgotten.
Q84 Dean Russell: Absolutely. I can appreciate the uncertainty. Mr Fisher, thank you so much for your openness and for sharing incredibly powerful and important testimony with us today.
Lere Fisher: Thank you.
Q99 Dean Russell: Dr James, I am interested more in the mental health side of things, especially as you have mentioned mental illness. Do we have a sense of the statistics yet as to how many people who have long Covid are showing similar issues around mental health, mental wellbeing and mental illness?
Dr James: The research is very early. It is a new condition. We need to ensure that there is adequate research. We know that people who have a chronic physical health problem are much more likely to develop a mental illness. We know from those who are working in long Covid clinics where they see mental illness a lot that people value the role of, for example, liaison psychiatrists in assessing people for depression, anxiety and posttraumatic stress disorder. It is front and central to much of what is happening in terms of long Covid. From a patient’s point of view, if you have a mental illness that you would not otherwise have had without Covid, that is the most important thing. It might not be part of the 12 symptoms that the ONS quotes for long Covid, but you have a mental illness you would not otherwise have had. We know that Covid attacks the nervous system. We know that there are new cases of dementia, psychosis and depression directly as a result. There are also the broader, social issues that have arisen. People have been isolated. We know that that can have a negative impact on your wellbeing. People have not had contact with other people. There is a lot of uncertainty around jobs and housing. People are in financial difficulties. People have had to live in conditions that are not conducive to good mental health, so a whole range of issues arise.
Q100 Dean Russell: Obviously there has quite rightly been a lot of talk about putting more investment into social care, and the NHS of course. Where do you think the balance lies, moving forward, for helping people with long Covid? Is it an NHS issue, a social care issue or a bit of both? Where do you see investment being needed specifically around the mental health side of things around long Covid in the coming years?
Dr James: Long Covid is an illness. It requires a health response. That has to be the focus of the investment and the service we provide. It has to be in primary care. It has to be in liaison psychiatry services. It has to be in long Covid clinics. Of course, alongside those things, as we have heard from our witnesses, there are social consequences. We heard from Lere about the impact on his life and the things he could do that he cannot do. We need to look at benefits as well. We need to look at the social care response. I think you have to go side by side with both of them.
Dean Russell: Thank you.
Q131 Dean Russell: I have a few questions. The first is around the role of pharmacies and community pharmacies. Over the past year and a half they have very much been a port of call for a lot of patients, to go in and speak to somebody. I was interested in your view on whether there is an opportunity to look at the role of pharmacists, moving forward, to support some of the challenges that GPs are having with regard to their time and the pressures on them.
Professor Marshall: Yes, there is, without doubt. A lot of practices work very closely with their local pharmacies. Of course, we have two models of pharmacies now. We have local community pharmacies as well as our in-practice pharmacies, but I think you are talking about the community pharmacies.
Dean Russell: Yes.
Professor Marshall: A lot of community pharmacies serve a really important role, particularly in the management of self-limiting conditions, which is a significant proportion of what we see in general practice. In many ways, that is one of the advantages of the triage system. We can speak to somebody who perhaps has earache, a chesty cough or a sore throat and say, “Actually, I don’t think you need to be seen by a doctor now. Why don’t you go to your pharmacist and get some symptomatic advice?” A growing number of pharmacists are providing a really superb service. There is a mechanism by which pharmacies are paid for that process. My understanding is that uptake of it has not been great so far, but it is something that we work on very closely with the Royal Pharmaceutical Society. We run webinars with them and we have a roundtable coming up very soon to talk through how we can expand that.
Q132 Dean Russell: Would you say that there is an opportunity for the Government to look at that in the round as well, as we move forward, to promote more pharmacist involvement with regard to tackling the backlog?
Professor Marshall: Yes, I think there is without doubt. The challenge in many ways is about the public and supporting the public to understand what services are available and how to access them. Pharmacies, of course, have to be open and they have to be able to provide the service. If the public were supported and informed to make decisions about when they need professionalised help and when they do not need professionalised help, that process would be extremely helpful. There is a fair amount of what we see in general practice that could be managed by self-care rather than by professional care.
Q133 Dean Russell: Do you think there should be better ways of doing pathways? I think it was mentioned in the earlier session about pathways for long Covid. Just generally, it is about the starting point for patients and the route that they go through navigating the NHS and social care to get the support they need, and to improve the efficiency of the system for outcomes for them and for the system.
Professor Marshall: I agree entirely. In many ways, pathway redesign is the core of health reform. We spend so much of our time talking about new structures, new governance arrangements and new funding, but the reality of an integrated experience for patients is the care pathway. There are some great examples around the country. In my area, in east London, there are some great examples around renal failure in particular, where the renal physicians, the GPs and groups of patients have got together, redesigned pathways and produced a seamless service. It has massively reduced the number of referrals to the hospital sector as a consequence. That is the kind of work that needs to happen across the country. I hope it will be part of the ICS reforms.
Q134 Dean Russell: I want to ask about digital innovation. With regard to learning, we have telemedicine and virtual consultations. When I think about virtual consultations, I think about people using iPads rather than phone calls to have a virtual face-to-face session with their GP. At the start of the pandemic, I remember hearing statistics that many GP surgeries were starting to buy or use iPads to have those consultations. Has there been much uptake in virtual face to face, or is it primarily phone call or face to face from your experience?
Professor Marshall: Not as much uptake as you would have thought or expected, as you say, at the start of the pandemic. It is ironic that the technological advances are based on technology that is 150 years old. The proportion of consultations that are carried out by video is very small. I think that is largely because of lack of investment in the technology and in the training to allow us to do video consultations well. At the moment, the technology that is available is very clunky. When you have three problems in a 9.8 minute consultation, spending two minutes trying to make the technology work is not time well spent. That is probably one of the reasons why both clinicians and patients have reverted to the telephone. The potential is enormous for investment in the technology, not just for consulting but for interacting with specialist services and for remote monitoring.
Q135 Dean Russell: Would you say, from the innovation and technology side of things, that as we look forward that should be one of the priorities for the investment that is coming through around the levy that is being put into place, and the funding from that? The reason why I ask is that it feels to me that whenever I have volunteered at my local hospital, or when I speak to GPs, one of the big issues constantly is paperwork and duplication of effort, especially on paperwork. Do you think it would be helpful to say that we need to earmark a set of money to look specifically at technology, digital innovation and innovation in broad terms?
Professor Marshall: Absolutely. It is essential. Although general practice has a reputation for being probably the most computer literate part of the NHS, we still have a very long way to go. Is it my No. 1 priority? No. Workforce is my No. 1 priority. Investment in technology is my second.
Q136 Dean Russell: Aren’t they connected, though? If the workforce are freed up from having to spend hours filing papers, that frees them to do the job they are trying to do.
Professor Marshall: Yes.
Dean Russell: Thank you.
