S2 Ep9: Recovery

MORE ON THE STORIES

Act 3 - Dr Susan McGrath

 

Dr Susan McGrath is an Honorary Fellow of the Centre for Post-14 Education and Work at the Institute of Education. Her research focus on young people’s decision-making shows how teachers, parents, schools and employers influence education and career choices.

In the wider UCL community, Susan is better known for her work as project lead of the IOE Gardens, including Sarah’s Garden and the Bar Terrace. The gardens make a significant contribution to the UCL Biodiversity Plan and, in keeping with the IOE’s global status, operate as an outdoor classroom with a distinctly international flavour.

 

TRANSCRIPT

SUMMARY KEYWORDS
patients, ucl, garden, people, pandemic, symptoms, athena, susan, sarah, support, long, recover, helping, hospital, students, prolonged recovery, community, recovery, guidelines, plant

SPEAKERS
Susan McGrath, Athena Akrami, Cerys Bradley, Theme music, Owain Rhys Hughes

Cerys Bradley  00:03

Hello and welcome to the ninth episode of series two of Made at UCL: the podcast. This podcast explores the world of UCL through the groundbreaking research and vital community work conducted by our staff and students.

Cerys Bradley  00:18

As you may have gathered, I'm not Cassidy. My name is Cerys Bradley. I'm a stand up comedian and UCL alum and I graduated with a PhD from the Crime and Security Science department a few years ago. Since then, I've been working on lots of UCL podcasting projects, including this one, as a producer and editor. Cassidy is finishing her dissertation right now, so you're stuck with me until she gets back.

Theme music  00:39

Cerys Bradley  00:39

Our theme for this month is recovery. And it's a theme I didn't know I needed to explore until I started speaking to our guests. I've been struggling a lot this year. I think I put a lot of expectations on 2021 and hoped that I would get to do all the things I missed out on in 2020. I naively thought that all of this (I'm sort of gesturing at the world around me here) would be over and things would be back to normal that they would have recovered. But they haven't. And that's been pretty tough to deal with. Working on this episode. However, speaking to three people who have done incredible things in this pandemic and beyond it from connecting and advocating for 1000s of long COVID sufferers across the world, to developing new technology that is revolutionizing healthcare, to bringing beauty and community to campus, has taught me a lot about recovery and what you need to recover. What I learned is that recovery doesn't happen overnight...

Owain Rhys Hughes  01:35

It's gonna take a long time to to recover and get back to where we were before March 2020.

Cerys Bradley  01:41

It takes perseverance...

Athena Akrami  01:43

It has ups and downs, some days you feel more recovered the nature - the fluctuating nature of the recovery, sometimes you feel better, sometimes you feel worse.

Cerys Bradley  01:54

And above all, hope...

Susan McGrath  01:56

I suppose for me recovery has probably been recognizing that however, things might look, life does go on, and it's going to be better in the future.

Theme music  02:25

[sad music]

Theme music  02:25

Fatigue, sensory motor symptoms, post exertional malaise, cognitive dysfunction, sleep symptoms, shortness of breath, headaches, poor attention or concentration...

Cerys Bradley  02:38

For our first story this month, I spoke to Athena Akrami. Athena is a neuroscientist at the Sainsbury Wellcome Center here at UCL. She runs a lab that researches memory, and that was her main focus until the pandemic, but I'll let Athena tell you her story.

02:54

So my involvement with long COVID was accidental and due to my own personal experience. I got COVID, March 2020. We were kind of preparing to shut down the lab and my symptoms had started and they were kind of classical symptoms, meaning cough, fever, shortness of breath. And even if I was kind of disappointed at the beginning, that just "okay, why I got COVID?" I was very careful, but I got it. But I was also happy to be honest, it's just okay - in a few weeks I will be I will be done with it. But that didn't happen. Like the two weeks became three weeks, became four weeks, okay. And then at the at the end of four week I ended up in hospital and after that, four weeks, became five weeks, six weeks, and I was just like wondering what's going on? This is not what we were told, this is not that like you know that WHO guidelines, NHS guidelines, CDC guidelines in the United States. They all say that either you ended up in ICU bed, right? You need kind of ventilation. Or you recover in two, three weeks. So what's what's happening? And then I read an article in New York Times end of April, that was around week six, by Fiona Lowenstein that she for the first time was talking about prolonged recovery in some of the patients with with with COVID-19. And then in that she mentioned that she has established a support group for those who are not recovering in a sense. So I joined the group. And I remember it was the weekend and I spent a whole weekend reading the posts by 1000s of other people, explaining symptoms and conditions and situations very similar to me. It was a very kind of a conflicting set of emotions right, on one hand, it was very sad to see that there are so many other people that are still you know, it's that they are they are in the dark they are suffering from symptoms that no one really understands and knows what's going on. But on the other hand was kind of validating that oh I'm not alone.

Theme music  04:58

[sad music]

Theme music  04:59

Tightness of chest, memories symptoms, muscle aches, insomnia, heart palpitation, dizziness, vertigo, unsteadiness, dry cough, difficulty...

Cerys Bradley  05:10

When Athena found out that Fiona Lowenstein, who is the founder of Body Politic, a grassroots, patient-led, health justice organization and co-founder of the Body Politic COVID-19 support group, was doing a survey on experiences of Long COVID she reached out to help and offered to analyze their data.

05:28

And that was basically beginning of May 2020. And we put out a report on 11, May 11. A 50 pages report on just like Google Doc trying to just like that was the very first rigorous quantification of prolonged recovery from COVID-19. The term "Long Covid" didn't exist at that point, we were all calling it "prolonged recovery". And so what are the properties of this prolonged recovery? What are the symptoms? So we looked at 62 symptoms at that point, and really, for the first time, pointed out that, hey, COVID is not just respiratory disease,

Theme music  06:08

[sad music]

Theme music  06:08

Short term memory loss, tachycardia, diarrhea, sore throat, elevated temperature, anxiety...

Theme music  06:16

All of us were optimistic that this is some sort of temporary involvement, we would like to kind of raise awareness about this prolonged recovery. We wanted WHO to just like revise their guideline, it's not a two weeks disease, it can go longer than that. But we were hoping that things will, will finish soon. And we will recover very soon and then we are done. But no, that was not the story. We decided to we need to kind of run a more comprehensive study. And I was the basically Principal Investigator of that study. We got the ethical approval from UCL and we reached out to various long COVID communities across the world, we translated the survey into nine different languages and we disseminate that to these groups. I think we launched that main study end of September. And more than 10,000 people basically participated in this study. And in this study, then, so I call it comprehensive study, because we looked at a larger set of symptoms. 205 symptoms.

Theme music  07:23

Difficulty with executed functioning, chills, flushing, sweats, difficulty problem solving, pain, burning in chest...

Theme music  07:32

Yeah, the data collection started end of September. And I think we started to analyze the first kind of batch of data from around 4000 patients who fell sick sometime between December 2019 and May 2020. And the result from that basically came out in Lancet EClinicalMedicene in July. And we wanted to quantify the time course, like which symptoms appear at which point during their during the recovery, right? Because it seems like all of us, we had this, this understanding that like what I had during the first two, three weeks is very different from what I have right now, which is like two or three months down the line. And so we wanted to capture this kind of time course of change in the symptoms. And we also wanted to look at other aspects of the condition like mental health aspect of the condition, as well as things like diagnosis, possible diagnosis, treatments, and things like that.

Theme music  08:30

Loss of appetite, irritability, tingling, pricking, pins and needles, speech and language symptoms, nausea, depression...

Cerys Bradley  08:39

Athena's research has helped to change who guidelines has provided vital information on this new and completely unknown condition and brought together 1000s of long COVID sufferers across the world and made them feel heard. I asked Athena if she had any advice for listeners who have long COVID or are starting to suspect that they might

08:57

I think they need to become self advocates for themselves, right, they really need to convince GPs in order to take their their symptoms seriously. Because again, usually GPs run their first order tests blood work, sometimes maybe chest X ray and just tell you that you're fine, though, if you're not fine, right? So they need to kind of self advocate for themselves just like and now actually there are a lot of kind of very useful guidelines and patients can print them, take them to their GPs and really kind of force GP to refer them to Long Covid Clinics. But I also advise long, COVID listeners to join support groups. There is a really rich wealth of knowledge on support groups. They are mainly about symptom management, but they are very good advisors and it's very difficult to get this information out of GPs unfortunately because GPs again they are not really familiar with Long Covid, they don't have guidelines, right? One thing, maybe the most important thing that helped me and I got that help via their post COVID Clinic last year was they referred me to Occupational Health Therapy. An Occupational Health Therapist, they made me realize that I am dealing with a limited energy envelope. And they also realize that I am not a person that I can just like, you know, shut off and say that I'm not going to work I'm not, I can't right? I'm very active, I understood even if I if I even if I am running high fever, I still would like to act to be to be to be active and work and continue right. I never kind of shut down my science, my neuroscience job right? I will continuously was active, but they taught me that okay, so you want to stay you want to stay active, you want to continue working, but you have to realize that you are dealing with now this limited energy. You have to prioritize activities. And you have to learn to just like to take these micro breaks, right, between your meetings between this and that. And those tips, they may sound trivial, but I was not thinking about them. And I was not aware of them and they helped me tremendously right? So I think these are these are management strategies that they can learn from their other peer patients on support groups. So I totally I really recommend them joining support groups. There are now various like in UK, there are really large support group on Facebook and Slack. And there is a really wealth of knowledge there that they can learn and use.

Theme music  11:33

[uplifting music]

Cerys Bradley  11:42

In our second story this month, I spoke to Dr. Owain Rhys Hughes. Owain is an Ear, Nose and Throat Surgeon, a Clinical Fellow here at UCL and the founder and CEO of Cinapsis, an app that is helping clinicians connect their patients with the best care. Here is Owain describing the app.

11:58

Very simply, Cinapsis is a communication platform that makes it easy for clinicians to communicate with one another and share information. And typically, that is clinicians who work in different organizations. So for example, GPs, paramedics, who you know are seeing a patient and they don't know what to do next with them. Before Cinapsis, what would happen is that the patient would be sent into a hospital or sent to an outpatient clinic with Cinapsis, they can right there and then they can get advice from a specialist.

Cerys Bradley  12:29

Aay a GP gets a patient, and they're not sure what to do. How do they actually use Cinapsis? What does that process look like?

12:36

They would talk to the patient, examine them and think, okay, you know, I'm thinking about sending this patient to the hospital. So what they would do is either from an app, so on an iOS or Android device, or from a browser, or from their own clinical system, they can launch synapses. And that basically determines, first of all, the acuity of the problem. So how urgent is this? You know, do we need to connect them to somebody right now? Or is this something that you know, provided that they get a response in kind of minutes or hours, then then they can deal with the problem? And then it also determines who the right team of people are to deal with this? Who has the expertise? Does the call get routed to a pediatrician? Does it get routed to, you know, an EMT surgeon or an orthopedic surgeon or a respiratory specialist. So as well as doing the connection, it allows images to be shared. So videos or images to be shared in real time and securly, and everything is documented. So that conversation is all recorded, the outcome of the conversation is recorded and everything goes into the medical record.

Cerys Bradley  13:38

When did you first kind of get the idea for it?

13:42

So I got the idea for it in 2015. Basically, at that point, I was a trainee surgeon. And one of the jobs that I had was to vet the referrals from GPs. So basically, at that time, GPs would write letters and send them in the post.

Cerys Bradley  13:57

Are you sure? Are you sure? You mean, 2015? you've not got the wrong century?

14:03

Yes. 2015. Yeah. So is that not long ago, yeah. So the post person would deliver these to the hospital. And then ultimately, they would land up on the desk that I worked on, and there were 200 of these a week. And it was my job to basically vet them because the problem the hospital had was that there was not enough clinic appointments to manage the demand. And they were tasking me with basically filtering out, you know, patients who didn't need to be there. And what I realized through that experience was reading the letters I could tell actually, you know, a lot of these patients probably are not going to really benefit that much from a physical visit with me several weeks from now, but I also realized there's absolutely no way that I now am gonna prevent this patient from being seen, you know, the horse has bolted. They've already seen their doctor, you know their doctors are fully qualified, knows the patient, has spoken to the patient, examined them. I'm not gonna to say, "no, you can't see us now." So what I realized is that the only way of solving this is for the GP to get advice right now. You know, when they're seeing the patient. There's no point doing it days later. And then, you know, I kind of realized that the technology at that time, so things like cloud telephony, cloud, video and messaging and all this made that interaction possible, for the first time and economical way hadn't been before.

Theme music  15:35

[uplifting music]

Cerys Bradley  15:41

A few years ago, I woke up with a really sharp pain that felt like it was in the back of my right lung. It was so bad that I couldn't take a full breath and I went to see a doctor who booked me in for an ultrasound. This started a journey of appointments with specialist after specialist after specialist and taking what felt like every test out there to try and diagnose my mystery illness. So I have been that patient that gets referred by their GP to someone waited weeks for their appointment only to arrive and discover that the person I am seeing doesn't know what's wrong with me either, and thinks that I should see someone else. When Owain walked me through Cinapsis, I could instantly imagine how big of a difference it might make to patients like me, but I didn't have to, because Owain has case studies, client testimonials and statistics to show pretty comprehensively how effective Cinapsis is...

16:25

For example, for Dermatology it prevents an outpatient appointment 70% of the time, or for something acute for example, that otherwise the patient would go to A&E, 83% of the time the patient avoids A&E.

Cerys Bradley  16:38

and this technology isn't just helping patients...

16:40

We're enabling for the first time acute medics to work remotely and support their colleagues in the community and in their hospital to manage patients and they're able to do it from home. Obviously they still work in the hospital, but you know they don't have to work in the hospital every day. They can be at home they can be you know, maybe with their family but also providing value. That is a huge difference and revolutionary different for them. Similarly for Dermatology, there's massive waiting lists for patients waiting to see a Dermatologist and there's just not enough Dermatologists, you know, and the ones that are working in the NHS they're working extremely, extremely hard. And Cinapsis is able to where there's areas that are really struggling is able to bring more resources, more staffing virtually to help help support general practitioners, for example to manage patients with with skin conditions.

Cerys Bradley  17:31

When Owain first set out to create Cinapsis, he had found a real need to help improve communication across care providers at a time when that was finally technologically possible. What he didn't realize was how necessary the output become.

17:43

So at the time of the pandemic, basically in Cinapsis' journey really this idea of and this way of working people were starting to see an accept, actually yes, this is the right way to work. What happened with the pandemic when it brok in March 2020 in the UK, was that it changed from being kind of a good idea and the right thing to do to an absolute imperative. So people who had experienced using Cinapsis in hospital for example, they absolutely saw that this is a way of keeping patient out of hospital and that was an absolute imperative during the first wave of COVID in particular, because it was risky coming to a hospital. You know if you're unwell when you come into hospital you could be infected in hospital, if you're infected and came into hospital and when you didn't need to you can infect other patients you can infect the staff. So yeah, so overnight really it became an absolute imperative to scale Cinapsis and you know, we were being pushed to do that. So it was a really busy, busy time. And it's kind of continued because you know now the problem is slightly different you know, the problem now is all the patients who didn't come to hospital. So there's an awful lot of patients now who are, we know in the community have medical problems that do need to come in and it's managing that backlog now so you know, Cinapsis is really playing a role in that as well.

Cerys Bradley  19:15

Cinpasis was a crucial tool for protecting patients at the height of the pandemic and it's still extremely vital now as the NHS is facing a huge backlog of people who have been unable to seek care over the past year. Owain and his team are helping to streamline that process and get advice and guidance to patients faster and help the NHS and us with COVID-19 recovery. If you think you will your colleagues might benefit from Cinapsis. You can find out more information and hear plenty of testimonials at their website synapses.org.

Theme music  19:42

[hopeful music]

Susan McGrath  19:56

[outside noises] When we first began making the gardens here. This was just entirely concrete. And the first 12 months were spent just carrying tons of soil and wood up here so that we could actually feel the garden. And the garden has a lot to do with biodiversity. We try to plant mostly native species so that we encourage local wildlife bees, birds, butterflies, insects, and in the center of three of the raised beds here, you can see we've got little ponds. The reason for the pond is because you just get loads more wildlife coming in whenever you've got water. And in fact, the very best thing about having the three ponds is that in the evenings, you can sometimes see bats here, they're great...

Cerys Bradley  20:37

For a final story, today, I have been learning about the community gardens at the UCL Institute of Education, or IOE for short. I spoke to Susan McGrath, who is an Honorary Fellow in the Center for Post-14 Education and Work.

Susan McGrath  20:51

I think I'm probably better known by an informal title, I seem to be the UCL community gardener [laughs]

Cerys Bradley  20:59

The clip that opened this story is of Susan in Sarah's Garden, one of three community gardens at the IOE, which are maintained by students and alumni. I spoke to her about how the project got started and what it means to the community.

Susan McGrath  21:11

The garden came about because we had a group of students at the Institute, who were very keen to do something to support the environment. They had the idea of a garden, but no idea how they could put that into practice. And I had the advantage of just being in the right place at the right time with the right knowledge, because I knew how to create the roof garden. I had the time and the scope to do it - at the time I lived in Woburn Square, I was Halls Warden in Woburn Square. So I lived on campus, which was massive advantage. And then what made it all come together was that the alumni office had 10,000 pounds that they wanted to offer to a project that would benefit students, staff, alumni and visitors. And they wanted students to put forward ideas for this. So that provided 10,000 pounds in startup funding. And that's how I ended up leading this project.

Cerys Bradley  22:03

The history of these gardens isn't only important because it is a successful student led project but also because of how Sarah's Garden in particular got its name.

Susan McGrath  22:11

Sarah's Garden came about because when we first began planning the project, Sarah Douglas was the General Manager of the IOE Students Union. She had previously been Welfare Officer at UCL Union. So she'd spent her entire working life supporting and helping UCL and IOE students and to say that she was much and that is not an exaggeration in any way at all. And while we were planning the garden, Sarah was unfortunately diagnosed with lung cancer and she died in December 2012. There were people, well all over the world really, who had known Sarah, who were describing themselves feeling bereft, and asking what would be done in her memory. And it seemed to me particularly that creating a garden would be a wonderful way to do that. And Sarah's children and husband thought it was a wonderful idea as well. So Sarah's Garden is actually a Memorial Garden, so it's very important to me that in Sarah's Garden, we create a sense of community because Sarah was so good at doing that herself. One of the things that it's fabulous for even as early as freshers week is recovering from loneliness. Because you know, if you go away to university, and you don't know anybody, and if you're not a terribly outgoing person, it can seem incredibly lonely. And I can't think of anything better than an hour spent reading in Sarah's garden along with another student or somebody who did their masters three years ago, or a member of staff, it's very good for well being.

Cerys Bradley  23:38

One of the ways that the IOE Gardening Project is creating that sense of community is by being entirely volunteer run, anyone can turn up and lend a hand in a way that suits them best. All they have to do is drop Susan an email (which means that all you have to do is click on the link in the show description.)

Susan McGrath  23:53

It's always been entirely voluntary, it has always been maintained by fundraising, people can be involved in any way they want. So I have a mailing list and some of the people on there are active gardeners, but some of them are just people who want to be friends of the garden and we'd like to know what's happening. Some of them are people who haven't got time to garden or perhaps can't for some reason, but are very keen to do things like oh, my magazine had a free packet of seeds on the front of it, would you like them for your seed bank [laughs]. So there are just lots and lots of ways for getting involved. And some people just come along for 30 minutes in their lunch break when they can. Some people, well we've had gardeners who've been involved for years.

Cerys Bradley  24:38

Some gardeners have even incorporated the gardens into their research and academic work at UCL.

Susan McGrath  24:43

The Institute has been the world's number one school of education for the eighth consecutive year, I think this is now. So it's absolutely fitting that Sarah's Garden is really in many ways an outdoor classroom. People come to learn and because it's always been a global community, there we're all learning each other, what would be the name for a basil plant in every other language [laughs]. We have sometimes had things in the garden that have linked with people's research interests. For example, a few years ago, we had a PhD student, Laura, who created an apothecary garden. And all of her planning, planting, harvesting was based around plants that have historically been used to help with mental illness, some of which are very useful for plants that are still used today for a variety of things, some of which turned out not to have any medicinal properties at all. But that was something that had a really strong and interesting research connection. That came about because from time to time, I clear perhaps two planters and have, well almost a competition, in that I say to people tell me on an a4 sheet what you would do if this was your space for 12 months, because that's a way of bringing new ideas into the garden.

Cerys Bradley  26:00

It's kind of strange to imagine this garden which is usually so full of people and wildlife and volunteers empty during the pandemic. And so to finish our interview, I asked Susan, how the project had been affected by lockdown.

Susan McGrath  26:12

Well one thing that the pandemic has done is to provide an answer to a question that I've often been asked, which is, what would happen to these gardens if they were not being watered? Because both the bar terrace and Sarah's Garden, they're really just container gardens, large container gardens. But anyone who's ever grown anything in a few pots at home, will know that rainwater never really penetrates into the pot and when people would look at me with a hose pipe when it was pouring down with rain, and say, you know, why do you need to water if it's raining, it's because if you don't keep to your schedule, things will die. I never wanted to try out the experiment of seeing what would happen if the garden was just not watered for an entire season. But then COVID came along. And COVID restrictions were, if you like, a quasi-experiment in that respect, because we couldn't get to the garden for an entire year, really. And so now I know the answer to the question of what happens if you don't water them. And there are four things. The first thing is that a lot of things simply die. The next is that some things will struggle on. The third is that some things will actually thrive. And the fourth is that a whole lot of new plants appear from nowhere. And those four things together are really helping me to make a new management plan for gardens that will be to some extent futureproof.

27:40

[hopeful music]

Cerys Bradley  27:41

If you want to help Susan futureproof Sarah's Garden and the other gardens at the IOE sign up to her mailing list via the link in the description.

Cerys Bradley  27:49

The IOE garden is part of UCL's Rewilding Bloomsbury and part of UCL's climate campaign Generation One. Together we are the new generation taking responsibility for climate action and turning science into actionable ideas. Join our new era of climate action at ucl.ac.uk/generation-one.

Cerys Bradley  28:16

I found my conversation with Susan actually quite cathartic. It was affirming to hear about the garden, a project designed to help wildlife rejuvenate and grow and people grieve and connect, and especially to hear how it has also been going through a bit of a rough patch, but it's going to recover and survive with help from Susan and her community. Susan and I talked about a lot of personal loss throughout her interview, and I found her passion and her quite practical approach to answering my questions really moving. I came away from it a little lighter.

Cerys Bradley  28:44

My conversation with Owain was so encouraging. My mum who is a nurse and is currently working on an understaffed cancer ward with patients whose treatment has been delayed because of the pandemic had heard of Cinapsis and seen it in action. It was so cool to do the interview and then find out that this technology is literally helping the people around me and making their lives easier.

Cerys Bradley  29:03

When I spoke to Athena, I learned of the huge support network that is growing and providing for Long COVID sufferers. Even though her research is showing both the extent of the impact of Long COVID and how little we know about it, the fact that this work is being done and being done by people who care so much and are so invested. I find that very comforting. Through making this podcast I have started to feel a little bit better about the future and how we might recover. So I'm going to leave you with Susan's description of a plant in Sarah's Garden that has survived here all by itself.

Susan McGrath  29:33

In December 2020, completely dead branches in all of these planters. By February 2021, some bright new growth appearing at the bottom of the viburnum lantana which is commonly known as wayfaring tree. By May that plant in flower. By the end of July that plant covered in red berries. And that's a remarkable story of recovery - nature doing it all by itself after 12 months of total neglect.

Theme music  29:59

Cerys Bradley  30:06

Thank you for listening to Made at UCL, the podcast. To listen to previous episodes or find out more about life at UCL visit www.ucl.ac.uk/made-at-UCL or subscribe wherever you listen to this podcast.

Cerys Bradley  30:22

This episode was presented and produced by me Cerys Bradley with support from UCL.

Cerys Bradley  30:27

It featured music from the blue dot sessions with additional sounds from our guests.

Cerys Bradley  30:31

Special thanks to Athena, Owain and Susan for sharing their time and expertise.

Cerys Bradley  30:36

This podcast is brought to you by UCL Minds bringing together UCL knowledge, insights and expertise through events, digital content and activities that are open to everyone.

Cerys Bradley  30:45

Thanks for listening