Patient Advisory Group Video
In June we had an 'away day' for the whole LOCOMOTION team to meet together in a hybrid format. Work package teams presented findings from their research to date and we had workshops to discuss the the future of Long COVID services and work over the final six months of the study.
Our Patient Advisory Group (PAG) created an enlightening video to be played at the event. The video is a compilation of PAG members speaking about their experiences of Long COVID, what they hope LOCOMOTION will achieve, and their message clinicians and researchers.
The video has been clipped into sections and they are embedded below. Transcripts of each video can be found further down the page.
1. Who are we and why are we in the LOCOMOTION PAG? - Video - Transcript
2. What do we hope LOCOMOTION will achieve? - Video - Transcript
3. Our worst experiences of Long COVID support - Video - Transcript
4. Our best experiences of Long COVID support - Video - Transcript
5. What do we want to say clinicians and researchers? - Video - Transcript
Thank you to our fantastic PAG for creating this video and their continued involvement within the study!
1. Who are we and why are we in the LOCOMOTION PAG?
2. What do we hope LOCOMOTION will achieve?
3. Our worst experiences of Long COVID support.
4. Our best experiences of Long COVID support.
5. What do we want to say clinicians and researchers?
Transcripts
1. Who are we and why are we in the LOCOMOTION Patient Advisory Group?
Karen: I’m a pharmacist that was working in a hospital that became ill in March 2020.
Nikki: I had COVID early 2020 and still have Long COVID.
Darren: I unfortunately caught COVID back in January 2021.
Clare: I was already a patient before I caught COVID with a lot of health problems.
Ian: I'm based in Kent, I got COVID in December 2020, I did my 14 days isolation up to Christmas Eve, and then when I returned to school in the January, I was a drama teacher, it was quickly clear that I just could not cope.
Karen: Through quite a long journey of being poorly, I came across NIHR and the Facebook community and through them, I got involved with the Locomotion team and joined as part of the Patient Advisory Group.
Darren: I got involved with my local NHS Trust with a patient reference group, and two years later I found locomotion.
Ian: I joined Locomotion because I think like many people who got Long COVID quite early on, I was very keen for people to gain from my experience. I'm a real believer in the phrase when life gives you lemons, make lemonade, and it just seemed to me that if people can learn from what I'm going through and what I'm experiencing, then that benefits everybody else, and that's something that I was really keen to do.
Nikki: I joined Locomotion because I had never before been so ill that I really thought I was going to die, until I got Long COVID.
Clare: There were a few of us that gathered together other people with the same symptoms and some of those people were also doctors. We were seeing that so many of us were affected in very similar and very strange ways.
Nikki: In the first wave, no one knew about what was subsequently named by patients as Long COVID. In the following months, we still had no medical help and no advice on what to do other than to take paracetamol and stay away from hospital unless you're having a heart attack or literally turning blue.
Clare: We came in contact with many researchers and doctors who were interested in trying to find out what was going on. We helped them out a bit with some studies and out of those came the invitation to join Locomotion as a patient researcher.
2. What do we hope LOCOMOTION will achieve?
Darren: Well, I'm hoping we'll get to an end goal where we've got a better understanding of how to treat this, because we don't know how long this is going to go on.
Ian: I hope that Locomotion finds that gold standard of care for Long COVID patients.
Clare: I hope that Locomotion will meet its objectives that it's set, because I think they're really important.
Karen: I'm hoping that we'll be able to find a good pathway for people to be referred to Long COVID clinics.
Clare: To take what we know is happening out there in terms of research and findings, and I want them to translate that into actual practice in the clinics.
Nikki: There is a critical need for the pathophysiology of this illness to be confirmed and for potential treatments to be trialled. But in the meantime, people need treatable conditions and symptoms to be promptly and effectively addressed, to be monitored over time in their condition, reassessed at intervals, and for healthcare professionals to keep right up to date with research and put new evidence into practice. Locomotion appears to be the ideal platform for all of that to be done.
3. Our worst experiences of Long COVID support
Clare: My worst experience of Long COVID support, I guess is to do with lack of any clinical input. As I say, I had health problems prior to COVID, I was already under hospital clinics for things like cardiology and respiratory. I went to those consultants, I contacted them by email and said, “listen, I'm really ill having had COVID, my oxygen level is really very low, and I had chest pains” which later turned out to be angina. Well, those consultants refused to see me because they said if I hadn't been admitted to hospital and in fact, I should have been admitted, but because I hadn't, they said “there can't possibly be anything wrong with you now”.
Karen: It was very hard at the beginning to get the GPs to understand the journey we're going through. Because nobody had an idea what was going, when I finally got results from scans that identified I, sadly, had developed clots and heart inflammation then because there were real symptoms there, I got a lot more support because it was visible. I think the hardest thing is for patients that don't have those results to get the support they need.
Darren: Through work, occupational health, I was given some physiotherapy. I had the first meeting, and I went in and met this physiotherapist, I sat at a table and explained what's going on, explained what I needed, what I wanted to get out of it. Then I said I had Long COVID and I did, they didn't pick up on me first but she, she took her laptop and slid down the table away from me as this was going on. She moved, moved her laptop further down the table and then it clicked and I was thinking, hang on a minute.
Ian: I had a chat with my GP about the cognitive issues that I face, and she sent me to a memory clinic. I went to the memory clinic and they tested me for dementia. I understood they had to test me for dementia, but at the same point I explained “it isn't dementia, I have long COVID, these are the issues”, and they wouldn't recognise that Long COVID cause the cognitive issues. All they did at the end of the day was say, “no, you haven't got dementia”, which I told them at the start “I haven't got dementia”.
Clare: A recent event was when I saw a neurologist and I tried to tackle the fact that I'd had an overnight change in my brain function. My memory from day one of the first infection, it's never improved, and the response was simply, “oh, don't worry about that with”, with a flick of a hand.
Darren: So, they gave me an app to download, and it was going away and, doing exercise at home. Now, I've already had this through the, ‘your COVID recovery app’, where I had done too much, and I ended up back in hospital with breathing difficulties. So, when I said, “well, no”, she said, and I told her what I was doing exercise I was doing at home, then she said, “right, I want you to increase that”. In the end of the day, an investigation was launched and it was found that she had no training, she had no understanding on Long COVID, she didn't know what was what, that was my worst experience.
Ian: I got a call from a doctor at the Long COVID clinic asking me, why I wasn't using the, ‘your COVID recovery app’. I discussed it with her, I explained that, “as an app it wasn't helpful, that the graded increase in exercise caused me to crash, and well, it just wasn't good”. We knew nationally that a lot of people were having the same experience as I was. The doctor acknowledged the app wasn't great, acknowledged that it caused his crashes but said, because I wasn't using the app, they're just going to discharge me. And that was that I was discharged, a letter came to my doctor and a letter came to me, I was off the system, and I felt adrift. I felt lost, I felt abandoned, with this health condition that caused me to lose my job and was affecting my life in so many different ways, so that was pretty bad.
4. Our best experiences of Long COVID support
Clare: My best experience has been these wonderful collaborations between different groups. Firstly, it was groups of other people who were affected and, and despite being very ill, the energy that was there, seeing what was going on, and trying to bring this to light. Then a little bit later, some of the collaborations between different groups that came, has been the most amazing support.
Ian: A few weeks ago, I had my first in person appointment with a Long COVID doctor and it was wonderful. I felt listened to, I felt valued, I felt that things were going to happen, things could change, you know, quite quickly. She was recommending different pathways to help me support and manage this illness, which is wonderful. She was also proactive in things that I had not asked for. She raised things like for example, financial, asking “how am I doing financially?”. I lost my job because of this illness and they're going to put support in place to help me see what there is out there. Just asking those questions is fantastic.
Darren: Meeting people in the same position. We often talk about things and someone else will snap up and say “that's exactly how I'm feeling”, and knowing you're not in this alone, that there are other people out there that are suffering from this. We are quite spread out across the country, so there might not be anybody on my street or in my community that have got it, so reaching out to other people's been great.
Karen: As lovely as your family, friends, and work colleagues may be, unless they've gone through the journey, they don't understand because you look ok to them, but you're not feeling it and they can't see that, because they think you look exactly the same, they don't realize how difficult it is to be the same. Whereas the groups I've met and research group I've got to know that are all struggling. like me, we all understand it.
Nikki: ‘Long COVID Support’ runs a peer support group with nearly 60,000 members, and we hear daily from people about their symptoms, treatments, experiences with health care, and we hear from people who have lost their jobs, their homes, and worse.
5. What do we want to say clinicians and researchers?
Karen: I think you need to really listen to your patient, if they say they are completely different to before they got ill they need to be listened to, and what they're going through needs to be listened to. It shouldn't be passed off as something like it's a hormonal problem, an anxiety problem, a stress problem, it needs exercise, you need to lose weight. You need to look at that person in front and really listen to what they're struggling with, and then try and refer them to the appropriate team.
Darren: There are things that are being done, but not enough being done, especially in the world of cognitive neurological issues. It's always labelled under the term brain fog, but now living with it for almost 2.5 years, I can see a difference between brain fog and the neurological and the cognitive issues.
Clare: Please do rule out significant conditions that can occur in COVID and remember that it's a diagnosis of exclusion. You've got to do those tests and rule things out that are significant, like the blood clot that I probably had.
Ian: None of us realized when this started it would take so long and we'd still be here now 2 and half, 3 years plus, later. So, I just implore you to stick with us, keep working with us. We want to get better; we want to find a solution for this. But I'd also asked that you hear us, that you involve us, but also in our care and our management, be brave to think outside the box and try things that may not necessarily fit onto an NHS tick list.
Nikki: Stop for a moment. Think about your life now and the things you do in a typical day you get up might have a shower, get dressed, take children to school, go to work, write emails, Teams meetings, you might pop to a shop, cook a meal, go out for a drink with friends. And now imagine suddenly having to cut right down on everything you do, needing numerous reminders everywhere, having to really concentrate to find the right words and to understand everything that's going on around you. Having to carefully pace every breath and every step, and having to rest in between every activity, all whilst also experiencing tachycardia, crippling joint pain, dizziness, headaches, and more. Imagine that just suddenly becoming your reality, because that is life with Long COVID and that is why studies such as Locomotion are so important.