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Steven

Brief Outline:

Steven fell ill with Covid in late March 2020. Whilst he was in ICU, he suffered two strokes. He has felt very supported by the work of a charity that helped him recover from the brain injury he sustained. Interviewed for the study February 2021.

Background:

Steven is married with three children (aged 34, 32 and 26). He has worked as a journalist and a public relations director but had retired following the strokes he had whilst in hospital with Covid. He is looking to work with health charities in the future. White British.

More about me...

Onset

In March 2020 Steven returned from a holiday in Mexico. He flew back via the United States. He is unsure where he may have caught Covid. After about two weeks, on the first day of the first UK lockdown (23 March 2020), Steven did not feel too well; he had a slight temperature and other flu-like symptoms and stayed at home.

Initially, Steven had not felt that he would be at risk of severe Covid. He had always been sporty and was still swimming at least five days a week as well as cycling to work.

Admission to hospital

When he had not improved after a week, his daughter, who is a doctor, insisted he go to hospital. He called the emergency line, a nurse asked him some questions and then suggested he immediately go to hospital. Steven’s wife drove him. As he expected to come back home soon, he only took his toothbrush.

In hospital, Steven got tested for Covid. The test result came back positive. His oxygen levels were low. Steven was admitted to a small intensive care ward, where all staff wore Personal Protective Equipment (PPE), “so you couldn’t always see who the nurse was”. He was put on a CPAP mask (Continuous Positive Airway Pressure) to help his breathing. Some patients around him were on the kind of CPAP masks that “had been designed by a Formula One team or something”, as at this time ventilators and masks were in high demand. Steven remembers finding wearing the CPAP mask difficult and painful. It cut into his nose.

The memory gap

Steven has no recollection of the four weeks that followed, although he was conscious throughout. He later learned that he had what the doctor’s thought was either a stroke or a TIA (a transient ischemic attack, often called a ministroke). He was given blood thinners and anticoagulants but suffered a second stroke.

The rehabilitation ward

When Steven regained awareness he was in a recovery ward, alongside other stroke patients. He remembers having problems expressing himself in English (aphasia) due to brain damage he had sustained, and some physical difficulties on his right-hand side. He was on this ward for 10 days and received physiotherapy there that would “make sure that [he] was safe at home”.

His doctors have looked into the correlation between Covid and his stroke(s). They suggested that it may be a condition of the immune system. He found it shocking to hear that he may have to take medications for this for the rest of his life.

Recovery and support

Steven has invested significant time into his physical recovery: he went to the gym frequently and cold-water swimming. At the time of the interview, he still experienced difficulties remembering first names in particular, some difficulty moving his right hand and right foot and a slight soreness in his neck, which could all be effects of the stroke(s). Through the NHS he received a cognitive test nine or ten months after his stroke.

After his discharge, Steven received no immediate support from the NHS, although the consultant who looked after him in hospital stayed in touch and closely monitored his health. He is immensely grateful to the NHS, which was under huge pressure, but saved his life. He feels lucky that he has received a lot of support from a charity for stroke survivors, which, in contrast to services set up for Covid patients, was already well established when Steven was discharged in the early months of the Covid pandemic. Through this charity, he could access between six and eight hours of online physical recovery per week. Steven formed an online peer-support group with other members of this group, all of whom had had a stroke; they talked about what had happened to them. Steven has found this very helpful. He has also spoken to his friends about his experiences. His family were helpful in providing advice where they could. But most support came through the stroke charity.

Changed relationships

Steven’s family has also received support through the charity, where they could join an online support groups for relatives. It was sometimes difficult for Steven and his wife to adjust to their changed life after Steven’s discharge from hospital and his (temporary) care needs. They have sought out support in the private sector.

Taking things forward

Steven has been involved in presentations to academic associations as an expert by experience. He has found it most helpful to be in touch with the consultant who treated him and who researched the relationship between strokes and Covid. Steven has been reading up on medical literature about strokes and Covid “to understand how it affects other people and therefore if there’s anything I can do to help.” He says: “I wanted to understand whether what I’ve experienced was of any value to other people.”

Steven has retired from his work at a university and was hoping to work with charities in the future.

Message to others

Steven hopes that going forward, services can learn from the way in which the stroke charity provided online support to 18-20 people via the internet. He furthermore feels strongly that there needs to be more research into the problems in relationships after strokes. He feels he has been affected in a way that is not necessarily visible to others. This made him realise that as a society, we need to deal with the impacts and restrictions on cognition and mental health from Covid infections.

 

Steven pointed out how difficult it is for his wife to be both his carer and his partner.

Steven pointed out how difficult it is for his wife to be both his carer and his partner.

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I think my wife would hate to be called a carer. I think it would be damaging to my health if I told her that she was a carer; I might not survive the day. But she is the one who notices if I forget things, she is the one who notices if I am struggling in times of language, she is the one who notices if I am behaving in a different way. It is very hard for her because she’s close to me to deal with it in a clinical way. So, if you’re in a relationship with someone it’s incredibly hard to switch between okay, now I’m going to give him a hug and say, are you all right, and then 30 seconds later, right the issue here is x, y and z and this is what we need to do. It’s both hard for me but it’s incredibly hard for her. And she works incredibly well at it, but it is immensely hard.

 

Had the stroke charity not offered any physical recovery to Steven, he would have waited 9 or 10 months for it. He felt connected through online chats with friends abroad.

Had the stroke charity not offered any physical recovery to Steven, he would have waited 9 or 10 months for it. He felt connected through online chats with friends abroad.

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I was particularly lucky, I think. I came out of hospital, and I was told this is your physical recovery programme, and I thought this is great, fantastic. I originally had something like between six and eight hours a week online with actually some really, well I knew them, some very senior sports people running these classes, so it was brilliant stuff. And it was only halfway through that I realised this wasn’t being produced by the NHS; this was by the charity [name charity]. And actually, if I had waited for the NHS, I mentioned earlier that I had a cognitive test, the cognitive test was done nine, ten months after my strokes, whereas the one done thanks for the charity was done a couple of months after the strokes. And so, I was lucky.

And then through that group of people who were doing online gym we’ve set up an online group, we chat, we talk. And so even though I was locked down from talking to other people I had this new group of people I could talk to very clearly about these things.

Plus the other thing is that because of what I did engaging with people online was not a new thing and was not a barrier. And because I have international friends actually that’s the way I would have talked to them anyway. So, in some cases I’ve been having more regular talks for example with my friends in Chile, my friends in Canada. But I think I am unusual because my group of friends is international, literate in terms of using Zoom and different things like that, and until very recently I was able to go out and go out and swim outdoors with my friends, not physically close, but we were close enough. We’d be 2m, 3m or 4m apart but we could chat in a group in the open air. That’s now stopped, and I find that difficult.

But I think I was an unusual case in that a lot of my – okay I couldn’t go to a restaurant, I couldn’t go to a film, I couldn’t go to the theatre, fine – but I could still have conversations with my friends all round the world. And again, I was lucky because my friends were concerned about me, so they were getting in touch with me. And so, I think I was perhaps non-standard in that the amount of social interaction I had with people has almost increased as a result of Covid. But I think a lot of the people that I talk to it’s been exactly the opposite and they’ve felt very isolated.

 

Steven’s family could access support through a stroke charity, but he worries about the tensions that arise from the changes brought about by his stroke.

Steven’s family could access support through a stroke charity, but he worries about the tensions that arise from the changes brought about by his stroke.

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At a number of points in this conversation we’ve mentioned your family members. Do you talk to them about what this was like for them?

Yes, I have. It’s not always easy to talk to them about what this has been like for them for several reasons: one the fact that for some of the period when I was most ill, apparently, I was having conversations with them but I wasn’t making much sense. And they were not allowed to see me. And at one point they were told by the doctors, or they understood very clearly that the doctors didn’t think I was going to survive. So, in many ways they suffered mentally more than I did. And we’ve talked a bit about it, but I think it is difficult for them to talk about what they feel about the experience when they’re aware that I am recovering, and I went through a different experience. So, they have been hugely supportive, immensely supportive, but I think it has been a heavy burden on them.

Yes. So, there are almost two different stories?

Two completely different stories, made even more different by the fact they couldn’t come in. At one point my wife threatened to camp outside the hospital so they would let her in, and she wasn’t allowed. I think rightly. But the difficulty for them was literally they saw me walk into hospital, stride into hospital, and the next thing is three weeks later they’re told, you husband may die. You haven’t been able to see them; well can I see him now. No, you can’t, we don’t know what’s going to happen. And I think the emotional effect on the family was intense. And in a way that is ignored; they were not offered any support.

And again, [name charity] was the only person who offered them any support. [name charity] set up just a very simple online chat group of relatives, partners and relatives of people who had suffered these strokes, and I know a lot of people felt it was very helpful. I haven’t asked detailed questions because I think that’s inappropriate, but I know a lot of people found it tremendously helpful. But they received, other than that, no help, yet they were the ones, they were quite often the principal carers, they were having to deal with the shock of having a close family member very ill, then being told in some cases their husband may well die, then being told actually he’s all right but he’s not really all right.

And also, I think it was the fact that nobody sat down with them – I’m not saying they should have done – but nobody sat down and said, this is what’s wrong with your husband or this is what’s wrong with your wife. And so, they’ve had to find out for themselves what’s wrong. And there’s no real help to say, look, this is normal or… [Inaudible due to poor internet connection] So, that has created, certainly with me and my wife, tensions. Again, because I don’t look different, so I might be saying something and my wife will be saying, but hold on a minute, you never used to deal with things like that. And I’m thinking, I’m not doing anything different. It takes an awful lot of effort to work out whether I’m doing things differently because of the strokes, I’m doing things differently because I’m at home and not at work, I’m doing things differently because I’m not hearing things in the same way. And in fact, in our case, we have hired a psychologist to work with us privately to try and get through some of these issues because they’re very difficult.

So, I think there’s been no support for the families. And if you look at government communications it’s just telling you how not to get Covid, it doesn’t tell you what to do if your husband has had Covid and he’s come home and he’s trying to get over it. Are you supposed to suddenly discover what it is to be a carer, to understand what may well have happened in terms of the cognitive changes that have gone on? I think it’s very difficult.

And what about the children who have no support and yet are dealing with people, their parents, their grandparents who may be very ill and they die, or may be very ill, and they’re just sort of oh yeah, here’s your grandad, he didn’t die, he’s a bit weird now, but he’s all right. And to have a three-year-old explain why social distancing is important really worries me. What is that going to do with them for the rest of their lives?

 

Steven and his wife sought out the help of a psychologist after his stroke.

Steven and his wife sought out the help of a psychologist after his stroke.

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I think the emotional effect on the family was intense. And in a way that is ignored; they were not offered any support. And again, [name charity] was the only person who offered them any support. [name charity] set up just a very simple online chat group of relatives, partners and relatives of people who had suffered these strokes, and I know a lot of people felt it was very helpful. I haven’t asked detailed questions because I think that’s inappropriate, but I know a lot of people found it tremendously helpful. But they received, other than that, no help, yet they were the ones, they were quite often the principal carers, they were having to deal with the shock of having a close family member very ill, then being told in some cases their husband may well die, then being told actually he’s all right but he’s not really all right.

And also, I think it was the fact that nobody sat down with them – I’m not saying they should have done – but nobody sat down and said, this is what’s wrong with your husband or this is what’s wrong with your wife. And so they’ve had to find out for themselves what’s wrong. And there’s no real help to say, look, this is normal or… [Inaudible] So, that has created, certainly with me and my wife, tensions. Again because I don’t look different, so I might be saying something and my wife will be saying, but hold on a minute, you never used to deal with things like that. And I’m thinking, I’m not doing anything different. It takes an awful lot of effort to work out whether I’m doing things differently because of the strokes, I’m doing things differently because I’m at home and not at work, I’m doing things differently because I’m not hearing things in the same way. And in fact in our case we have hired a psychologist to work with us privately to try and get through some of these issues because they’re very difficult.

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