Caring at a distance

With visiting restrictions in place in almost all NHS trusts, family members were not able to be with their loved one in hospital. Without visitors, patients were isolated and cut off while they were in hospital (see also ‘Experiences of infection control measures’). Staff were without family members or friends to help them get to know their patients (see also ‘Contact between family members and staff’).

Many of those we interviewed found not being allowed to be with their loved one highly distressing (see also ‘Staying in touch despite visitor ban’) and sought creative ways of ‘being present’ and connecting with the staff caring for them in the hospital.

Here you can listen to family members talk about their experiences of how they provided care at a distance. This page covers:

  • Providing support and advice over the phone
  • Dropping things off at the hospital
  • Personalising and supporting care at a distance

Providing support and advice over the phone

Patients in ICU were often unconscious for much of their stay. When they were awake, they were frequently disorientated and exhausted. It was particularly difficult to focus and take in new information. Some relatives we spoke to tried to help their loved one make sense of information that they did not understand. With visiting restrictions in place, this had to be done via the phone and via text.

Kate described how her husband was too unwell to grasp what was going on around him in hospital: “I mean they may have explained it to him, but I think, one of the issues is, that he was probably so oxygen deprived he didn’t really understand that.” She helped him via text, drawing on what she knew from her own medical training, and clarified missing information with staff over the phone. Sadia obtained information about her father’s condition from clinicians and then helped her father do breathing exercises on their video calls.

Sadia collected information about her father’s condition, and then helped him do breathing exercises on the phone.

Did you keep any sort of notes?

Yes, I had quite a few notes, and I’m trying to think now, where I’ve put them, ‘cause I did keep them somewhere. But I literally had, so I had the date, and then his oxygen times and the oxygen saturations, and then, you know, notes of what the doctors were saying. Yeah, so constantly on it. And then kind of analysing the results, you know? And it was really funny, because as I got more and more into it, I knew more. So, like it wasn’t just the oxygen saturations, we needed to know the respiratory rate as well, because we needed to know how hard he was working to thing, so it was like, you know, then if the respiratory rate was a little bit higher, I’d be on the phone to dad, going dad, you need to do your breathing exercises, hold your breath. And, you know, talking him through that, and again, because of my cousin, and because of my husband being unwell, I knew some of the breathing exercises, so I was able to talk through that on the phone with him, because he wasn’t getting that physio, the kind of breathing physio. So, I was able to do that with him and kind of count him down. And those kind of things really helped with him as well.

And he had that determination. I still remember his face, like seeing him where he’d have the ‘cause he could see the stats, and he would do his deep breathing, and he’d say, oh yes, it’s going up now, oh yes, it’s coming down. It was like, yeah, dad, that’s really good. So, he started to become so much more aware himself, and he would know what he needed to do to kind of get the levels to where they needed to be. So, he was fighting, and again, I think, you know, how many people were there that didn’t know about these breathing exercises, and to know to have to do these things, to be able to help, you know?

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Dropping things off at the hospital

Family members could sometimes drop things off at the hospital reception or the entry door of the ward. This served a number of purposes: to deliver food or things that their loved ones liked, to contribute to the personalisation of their care, and to support the staff in a time that was very difficult for them too. During these drop-offs, family members had a chance to put faces to the staff members they had spoken to on the telephone, and vice versa. Shireen’s son brought food for his father to the hospital: “Sometimes, my son took the food and handed to the security man and write the name and the wards. So, they gave it to him. He wants very warm and it’s different hospital food and homemade food is different.”

Sadia regularly brought in things for her father. She felt the nurses “were great in terms of getting stuff to my father… they understand, it’s not an easy position for them to be in, to not allow family members in.” To Sadia, dropping things off at the hospital made life feel just a little bit more ‘normal’.

Sadia dropped off vitamin C and coffee for her father on the ward, which mimicked normal life.

We’d be dropping off, fortunately the hospital was close, so I was able to drop things to him, like high doses of vitamin C, you know, things like, just general, I mean, you don’t even know if it’s going to make any difference, but things like, you know, to suck on a ginger and honey sweet, or something. You know, all these little things that, you just try everything you possibly can, don’t you? And you just think, there’s so many people that wouldn’t have had that. Yeah.

The fact that you couldn’t visit?

Oh that was so hard. I mean, I used to be there, literally every day, it was so funny, after having my husband and my dad there, I was like, I think I could probably do this drive route with a blindfold on. It was really hard, but I know it sounds really silly, but just being able to walk up to the ward and hand over something, and then have a conversation to say, oh, have you got it, was just so comforting. And then it was really funny, because I still remember, dad started to really improve, and there was a Costa, and we walked by and I was like, oh dad, do you fancy a cappuccino? And he was like, oh, can you get it for me? I was like, yeah, I’ll give it to the nurse, and she’ll drop it straightaway. And little things, like just being able to do these little things like normal life for him, was like, it was so nice.

So, I think being able to do that was good, and I think that was one great thing about the hospital, they let us go up to the ward, and kind of hand it at the door.

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Things were quite different early on in the pandemic, when family members were not always allowed to take things into hospital. Dana described how she found a workaround, which points to the uncertainty that characterised those early weeks and months.

When Dana wanted to drop off earphones for her husband she was not allowed to do so due to a perceived risk of contamination.

And once he realised he was going to have to stay there, one of the things that I knew was going to help him and that he knew was going to help him was to have earphones so that he could listen to music or something to distract him with nobody to visit him or nobody to talk to.

I got in my car and drove to the hospital and tried to ask at the gates if they would take up just his earphones with his name on and a package, but I wasn’t allowed to go further. Again, I came home and contacted everybody I knew who worked in the vicinity of the hospital or in the hospital and obviously several people said no that they couldn’t take anything in because they were worried about contamination.

But one kind person did agree, she was actually a friend of my husband’s from school but not somebody we see often. But she was a midwife and she worked at the hospital and she agreed. She wasn’t working that day, but she took the earphones into the hospital and she left them at the door of the intensive care with a note and they got to my husband.

That was really helpful for him because he then had something to distract him a little bit, he could listen to music a bit and it made a huge difference, that act of kindness from a friend.

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Personalising hospital care

Personalising care was particularly important to family members. Dana describes how she sent “care packages” to enable them to take care of her husband in a more informed and personal way:

Dana and her kids made care packages to motivate staff and provide them with information about her husband.

So, in January we were even more intensely surrounded by how devastating this virus is and how lucky we are and how much pain people are going through but also, I think a lot of people reached out to us around the communication issues and that it was still very challenging for families to receive information. One of the things we did that was helpful to us was we…every week, the kids and I made care packages for the hospital staff because I felt two things, one is I was concerned about the lack of personal connection, without families being there, we’re all human beings, you get to know a family, you’re connected to them, you’re connected to the patient.

With the anonymity, nobody knew anything about him and us and actually that was an interesting thing, I was never, ever asked for his medical history. Obviously along the way, things came up and then I would send information so that they knew that there was a background, but it was like wartime medicine, it was just take it as it comes rather than planning and thinking.

So, during the time…so the first two weeks, obviously we didn’t do anything but when he left the first hospital, I sent a thank you and a picture of him with us and just to say that we are…this is who he is and there was the person…again I had to find…there was no direct way to do these things because there wasn’t anybody to talk to. I didn’t have a liaison person, so through a friend of a friend, I found a South African who was a psychologist who worked at the hospital who agreed to take the package in for me and then who actually took a photograph of the nurses receiving it and shared with me what it meant to them. So that was helpful.

Then when he was moved to the second hospital, liaison was a little bit easier because it was a smaller hospital and there was somebody, I could email a message and one of my friends was a volunteer delivering food to hospitals and happened to be the one who delivers to that hospital. So, every week, he took it for me and there were two purposes to me doing that, one was I felt like I wanted to do something positive, I wanted the kids to see us doing something positive in this very challenging time, but the other was that I wanted to make it personal. I wanted them to know who we were and who he was.

So, I did make it personal, I made…we baked, and we bought tea and coffee and cakes and every time we did it, we wrapped it up and every time we did it, we put a photograph of my husband with all of us and we wrote a personal note and because I knew the names of everybody I had spoken to because I had written them down, I always made the card personal. So, I wrote to every individual in the card because I think that that matters, I think when you are in a time like this has been where numbers are so high, I think it matters that you count individuals, not just the numbers and so that was important to me.

Eventually, at some point towards…probably the fourth week, the senior consultant at the second hospital who I spoke to a few times said to me, it’s not necessary for you to send things and I explained to him that I knew that it wasn’t necessary, but it was helpful to us and that I hoped some act of our kindness to them was also helpful to them.

What did he say?

He understood, I think, and I think he wanted to make sure that we didn’t feel like it was necessary in order to treat him.

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The objects family members dropped off helped facilitate conversations in hospital between patients and staff, in a way that supported them to develop a closer relationship.

Sending pictures and audio to support nursing care

Many patients were confused when they awoke from being sedated for mechanical ventilation. One woman said that if she could change one thing in her experience of Covid in ICU, it would be that a family member could have been present at her bedside when she woke up from ventilation. This would have helped her tremendously with her confusion: “When somebody wakes up from being ventilated, I think that a family member should be there because it’s pretty horrific to wake up from something like that and nobody is there that you know, yet they all know your name, but nobody is there that you know.”

To compensate at least in part for the absence of family members in the ICU, nurses sometimes asked family members to be on the phone when their loved one was woken up from the induced coma. Others were asked to send in pictures or audio files to give the patient “something happy”, familiar and motivating to see when they awoke. Paul said his wife “sent in a lot of photographs of the pups, and one of my son, my daughter and my wife. So, when I did wake up one of the first things I seen, apart from the doctors and nurses, was my dogs, 12 puppies. So that sort of cheered me up. It was a positive. I had to keep looking for positives.”

The ICU staff told Paula all they knew about Victor was his name and age and asked her to send in pictures and audio. These inspired Victor not to give up.

Paula: They asked me at [name teaching hospital] if I would send in pictures and audios, this was absolutely amazing because my sisters then sent pictures in, I sent in pictures because what they said to me, when they first spoke to me at [name teaching hospital] was, all we know about Victor is his name and how old he is. I thought, wow, so I sent in a little email, a little update of where he was from and what he was and what job he did and what have you and then sent in pictures.

Then friends, all our friends, sent in little audios, talking to him, which is what they asked for and they said, it was just totally amazing because that really helped with bringing him round, that he could hear voices and it wasn’t just me and Rob, it was our friends and they were all…one of our friends, [name friend], did…

Victor: He’s a bit of a DJ.

Paula: Yes, so he did some little…

Victor: Sets.

Paula: Little sets and sent them and Vic, this has been requested by such and such and then he would play a little song, so that went down really well, they said, it was amazing what we got.

Victor: We’ve got a very, very close-set inner circle of friends but we actually know, outside that, we know a lot of people and in turn, a lot of our close friends know a lot of people and some very close friends organised the messages from some world-famous people, world famous actor, world famous old footballer and when they came through, I sat there, I was totally blown away and inspirational, so inspirational.

I lay there thinking, if people can take the trouble to get in touch with these people for me, I can’t…obviously I can’t let my family down by deteriorating any more. People that, I didn’t realise, thought so much of me and that really, really gave me even more fight, I wasn’t going to leave Paula, I wasn’t going to leave Rob [son] ever, not while I had some fight in me. But I was totally blown away by the realisation I was actually quite liked. It was really, really inspiring, if felt as if I failed to survive, I would be letting a lot of people down, that’s what it felt like.

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A nurse asked Stephanie to send pictures to provide motivation and a topic of conversation: “One of the nurses phoned me and said I’ll send you my e-mail address can you e-mail me some photographs of Peter’s and we’ll print them out and out them on the bottom of his bed so it will give him a bit of motivation to improve and know what he’s got to come home to, you know. So, I thought that was nice as well, you know and so they did they had these pictures at the bottom of his bed, and it gave them a topic of conversation as well because they could ask him about things in the pictures.”

Overall, not being able to be present in the hospital was extremely difficult if not traumatic for family members. These little ways of establishing presence in the hospital, although not a substitute, made it easier for some family members we talked to, to manage this challenging time, and made important contributions to the way in which care could be provided for their loved ones.

Visiting the hospital in exceptional circumstances other than end-life visits

Some relatives were allowed to see their loved one because they themselves were in hospital at the same time. For instance, John could see his wife in ICU because she was admitted on the respiratory ward, and the consultant gave permission for them to meet. When staff members knew somebody who had been admitted to hospital, they could sometimes see them in hospital. But even this was not straightforward. Melanie, for example, could not see her friend Rhod as often as she wished due to variability in the supply of personal protective equipment (PPE) at the time. Deborah and her children were asked to come into hospital to help their loved one through their delirium.

John and his wife were able to see each other when they were both in hospital.

And when you were on the ward was your wife still in hospital? Had she been discharged by that point?

She was discharged three days after I came up from ICU. So, we were pretty well…we were both on the respiratory ward but in two different parts.

But he doctors allowed her to come and see me on those couple of days we were in there together. And then she went home. And once she went home, she wasn't allowed to see me. So, our contact was through telephone and Facetime…yeah, Facetime for the next few days. Or for the next few weeks because I was in there for the best part of three more weeks before I got fit enough to be able to leave the hospital.

So, what a bizarre situation not being able to visit each other in hospital?

That's right, yeah. The only reason she did see me in hospital was because she was there with me effect. And that was the visit into ICU and the visit between the two wards which were side-by-side and linked together anyway. So yeah, so quite interesting. It was quite interesting, one of the consultants came and saw me one day and she said I've just seen your wife next door, she's just prettying herself to come around and see you because I've given them permission to allow her to pop round to see you. So quite interesting.

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End-life visits

Thousands of people have died because of the Covid-19 pandemic. Each number is a person who lost their life; each death was a loss for...