Going home from hospital and follow-up care after a burn

This section covers:

  • Going home from a stay in hospital
  • Outpatient appointments, including for dressing changes
  • Community care
  • Adjusting at home
  • Being discharged from care

Some people will be ‘inpatients’, meaning they need to stay in hospital for a few days, weeks or even months for treatment and recovery. For burns that do not require an inpatient hospital stay, it is common for people to go home from a burns unit or burns centre with a treatment plan and sometimes they may need to attend ‘outpatient’ appointments (meaning that they go for appointments at a hospital) or be seen by community services (like GPs).

Going home from a stay in hospital

For those people who had a stay in hospital, going home was often a key aim. Setting goals that they needed to meet in order to go home was used as motivation by a few people. Helen X said that goal-setting helped her “push” herself to get better, because “I wanted to be home for Christmas”. Saffron, whose baby brother was born at the same hospital whilst she was an inpatient there, set herself a goal to learn to walk again so she could go to meet her new brother.

Helen X had a goal in mind which she said helped her recovery.

The next morning I wanted to get out of bed. This is a Sunday, about four days after it happened. And they said "Really?" And I said, "Come on, let's go," you know… [Inaudible] And then, I think that helped my recovery was also I had this positive mental attitude that as lovely as it was being in there being fed and looked after, I really wanted to go home. And because it happened before Christmas, I had a goal in mind – I wanted to be home for Christmas.

I said to her, I said "Right, you can take me out the ward, and I’m going to start walking up some stairs." And she goes, "You're not ready for that." And I said, "Let's try it." So, I always, sort of, set myself goals. I wanted to do things, but I said the healthcare professionals, without them, I would never been able to achieve my goals.

Did you think that goal-setting was helpful?

Yes.  Oh, absolutely, yeah. I do remember it's probably the Monday, and I said to my nurse, "What stages have I got to go through for my recovery?" She said about the dietitian, speech and language because I had my vocal cords are still damaged but, so I had to see speech and language therapist, and then there was the physio and all these people. And each one of them I said exactly the same “What do I have to do to get to the next stage?" You know, "This is my goal. I want to be out for Christmas. What do I have to, what I have to do – not what you have to – I have to do.”

Embed Print Transcript

Thinking about going home from a burns facility after a stay could also be daunting. Some people experienced a mix of emotions. This included relief about being well enough to return to familiar surroundings and routines, but also feeling nervous about managing the burns on their own. This was the case for Helen Y, who had felt “excited to get home” but worried as to how she would cope with her injuries “in a normal house”.

When a person went home after a hospital stay, it was often with a care plan and instructions on how to care for their burn. This could include moisturising with specialist creams, changing dressings at home, wearing pressure garments, and attending regular outpatient appointments.

India found going home to be a big relief.

I think it was a big relief when I first came home. So, I have two older brothers, so my family had been having to juggle with having those two and having me. I was in a hospital that was a little bit further away from my house than, I guess, ideal because I was too small to go to the closest hospital. And so, it was amazing when I got to come back and see my brothers, my family. And then I had to sort of go back into school, which was… I was very lucky that my school was lovely, and they were really understanding.

Embed Print Transcript

Tom wanted to recover at home as he found being an inpatient “uncomfortable”.

I’d say five days-ish, so not that long. I think it was once, like, they slowly started taking the bandages off, you know, and because I was 21 or -2, the skin heals quite quickly, and it sort of reached a point where I sort of wanted to go home and try and do it from home as soon as it was an option. Just because it was a bit uncomfortable in the hospital and, just, I don’t know, just sort of stuck in a room with a tiny TV, not being able to do much and, yeah, it wasn’t too long in the hospital.

I think it was a bit of a discussion both ways, they just, I think they were asking ‘You can stay if you want but if you want to you can go home if you feel you’re ready.’ It was a bit like that, and I felt, I sort of, well, needed to go back.

Embed Print Transcript

Outpatient appointments, including for dressing changes

When people went home after receiving initial treatment for their burn, or after being discharged from a hospital stay, they would often need to attend outpatient appointments whilst recovering. The frequency of these appointments would vary, depending on the severity and complexity of the burn. Some people were able to receive care at a local hospital. Others needed to travel further to a regional burns centre. You can read more about people’s experiences of accessing and using health services for burns here.

In the days, weeks and sometimes months following a burn, it is common for a person to attend outpatient appointments a few times a week to have their burn cleaned, dressed and to ensure it is healing properly. Usually the length of time between appointments would grow longer as the burn began to heal. Sinead, whose daughter was burnt, described these outpatient appointments as a “comfort blanket”, as it was reassuring that she would be seen again by doctors every few days.

Some people we spoke to had virtual or phone appointments because of the Covid-19 pandemic. Amy and Chris Y found virtual appointments to be beneficial because it saved them from driving for several hours to attend in-person appointments. Holly told us she found the virtual appointment to be a bit “awkward” as she struggled to show her son’s burn to the camera.

Chris Y and Amy thought virtual appointments were far easier than in-person appointments.

Chris: Actually, I have to say, it was far easier to do it remotely like that, than it was to spend, you know… It was a question of getting William into the right place, we took his pictures, I e-mailed them down to the burns-, to the scar clinic, the doctor reviewed them, we had a conversation the following day and then we talked to him six months later. It was, compared to having to take three hours out of your, you know, three hours of driving, an hour at the hospital, the extra hour to go and get William, to take him to school, all the admin of getting him out of school – it was actually far easier.

Amy: And they were very quick, because we were seeing him then every three months at the time and they were very quick to put their virtual stuff in place.

Chris: Yeah.

Amy: I think they just changed the appointment to a virtual one. So, it must have been March, April-time and I think maybe they said “Oh, we’ll see you, we’ll maybe see you in person next”. This was before anybody knew how long it was all going to go on for, our "three-week lockdown", and we commented that actually it was really, it was a lot easier, and they would facilitate that anyway, virtually, they said. So, it was kind of good. It was harder to remember appointments.

Chris: So yeah, that was the only thing is, remembering appointments rather than having to take the day off to go and get it. And the only other thing to say about that is that I do photography as one of my hobbies, so I have kit to do it. Whereas, if you didn’t, you’re taking… And I think sending it down to the scar clinic, and they were happy with what I’d sent them and it wasn’t then “Oh, can you take this or can you take that, can we have that shot, can we have that shot?” I went “Ok, I’ve seen you do it, I can do it myself, I can send you the photographs, tell me what else you need, and we’ll make it happen.”

Amy: And because of Covid, William was at home as well, otherwise we’d have been taking him out of school to have a 10 minute phone conversation. So, it kind of worked because everyone was home together.

Embed Print Transcript

Community care

Services provided by community care teams, such as GP surgeries and district nurses, can be used in burn management. For example, some of the people we spoke to attended appointments at local GP surgeries where their burn would be checked to make sure it was healing. Other people had visits from district nurses who would come to their home to clean and dress their burns. Whether these services were offered tended to depend on which local authority a person lived in, and how severe or complex their burn was.

Helen Y and Marilyn both attended appointments at their local GP surgery to check their burn was healing. Helen Y’s GP was satisfied her burn was healing and she was discharged from her consultant’s books. Marilyn, however, was sent on to her local hospital as her burn had become infected.

After a delay in her burn being cleaned and redressed, Marilyn’s burn got infected, and her GP surgery sent her straight to hospital.

So, they told me that as soon as I get back home, I had to contact my own surgery, and, with a view to having it redressed. So, which I did, but unfortunately, the nurse was off sick, so it couldn't be redressed when it should have been. And I phoned back the next day and she was still off sick. And so, I said to them, well, “I’m just going to have to go to the hospital, and have it redressed because it can't wait any longer”. However, they sent out a nurse.  You know, one of these, the nurses that just comes out, and she dressed it, but by that time, an infection had set in. So, it got quite bad after that, and so that was on the Tuesday. The burn had happened on the Sunday, and that was the Tuesday.  And by this Thursday, when I did get to see a nurse in the surgery, I was feeling quite ill. My temperature had gone up and things like that. So, they redressed it and told me to come back on Friday. And they were going to leave it over the weekend, but when they saw it on the Friday, they saw, no, this is this is getting worse and worse, it was all foaming and I think this time, I felt really quite ill, so they said I had to go to the hospital immediately. So, I got to the hospital, and I got through to the, you know, the room where they eventually take you, and they were quite horrified with it. By that time, it was down my arm and up my arm, and it was a bit of a mess.

Embed Print Transcript

When Simon’s son was burnt, district nurses would visit their home to clean and redress the burn. He found it reassuring to see his son’s burn healing.

When the burns nurses would come over and look at it and treat it and rebandage it with, I think it’s special silver-backed gauze, I think it was, and it was quite, this is probably the wrong thing to say, but it was quite nice to watch the size of the dressing reduce, and the amount of, kind of, what’s the right word here? I want to say, the amount of faffing, but it’s not faffing, because that’s not the right word, but the amount of time and precision and time that it took for them to undress it, clean it, dry it, put cream on it, bandage back on, wrap it around him and tie it off, dress him, you know, as that gradually reduced to the point where, actually, you know “Put this plaster on, leave this plaster on we’ll take it off in a week when we see you again” it kind of, it reduced the impact I think because it felt a bit more, you know, it was healing and he was going to be ok.

So, I think kind of initially in the first stages when it was, someone would have to come to our house to dress it and undress it and, you know, treat it for us and, not invade your home but, kind of, in my head, I’m thinking “What is she thinking? What is she …” because she obviously knows the case notes, she should have read the notes the doctor will have made, she’ll know the story, you know “What’s she thinking of me? Is she judging me when she’s here? Is it going to be a case of should I be somewhere else? Am I going to get some difficult questions?”. But as that kind of faded away and then we kind of ended up going to the hospital for him to have his treatments, I think it started to feel a bit more relaxed now and just kind of routine, you know, like you would if your child had stitches, I guess. You know, you go for the initial stitching and then you go for a follow-up to make sure the stitches have dissolved, and it’s knitted together and then you might go for another follow-up later on. It kind of felt a bit more routine then. And because he’s actually going tomorrow it’ll be interesting to see what the doctors say about it tomorrow. But it’s kind of nice that the severity of it seems to have kind of faded away a little bit, because they’ve been a little bit, you know, the attention that he’s had from the NHS has reduced, which means that it’s obviously a positive sign, I think.

Embed Print Transcript

Adjusting at home

Some of the people we spoke to faced difficulties adjusting to being at home with a burn. Some tasks which were easily achievable before, such as climbing stairs, going to the toilet, or using cutlery, became difficult. A few people like Chris Y and Amy felt that more advice on accessibility and practical aftercare should be given to patients before they go home by healthcare practitioners. Sarah worried about being “on your own again” and said, “that was one of the hardest bits”.

Chris Y and Amy told us that they found the “practical aftercare” of a burn to be difficult.

Chris: Yeah, so he wasn’t in that long really, he was in the three nights, out on the Monday. So, he did it on the Friday, he was out on the Monday… [Inaudible] …With, bandaged from his waist down really. Both legs and both feet and we were having to make arrangements for, uh, moving his bed so that he could actually get into bed. We were having to rearrange furniture so we could get him somewhere to sleep.

Amy: He has a cabin bed so he wouldn’t, he couldn’t climb the steps to it. So, there was a lot of practicalities around that.

Chris: Yeah, that was what I was just about to say was actually, the one thing that you don’t consider is how much more time any of this stuff takes.  So, if you’re thinking 'Ok we need to go out, it takes me 10 minutes.' No, it doesn’t, it takes half an hour because now you’re having to move somebody around the house who has limited mobility because of his bandages, because of his injuries and then 'Oh, how do we get him into the car?' It was actually a moment of debate when we took him home when he was discharged: how do we get him into the car so we could bring him home, because he can’t bend.

Do you think that more consideration should have been given to practical aftercare?

Amy: I think probably more raising that these might potentially be issues. Because, obviously, you’re trying to think in the hospital, and we’d obviously worked out that his bed would be an issue and we’d taken steps to do that. But actually, you kind of need to go through the logistics of everything. Like, all the normal stuff, so the going to the toilet and things and I mean, it would have been, fortunately, we have a toilet upstairs and a toilet downstairs – we’re very lucky – but um, some places you wouldn’t have that. So, just the logistics of if you were, if we only had a downstairs loo, just getting down to the downstairs loo to go to the loo in the night, or something.

Embed Print Transcript

Alongside outpatient appointments or visits from community care for dressing changes, some people were told by healthcare practitioners to change their dressings themselves or with family help at home. Sarah’s partner helped with her dressing changes in between her hospital appointments. Although Sarah felt grateful towards her partner for his help, she said it must have been “absolutely horrendous” for him to watch someone he loves go through burns dressing changes. Marilyn was told she could clean and dress her burn at home with the help of her husband, but they struggled so the hospital offered to do it to “take the stress and strain of that”.

Lily used scar gel to treat her son’s burns and would change his dressings herself. At first she felt scared to change his dressings.

We had to go every second day and then it came to after every five days. And when, I think, his dressing, they had to change after every five days and then they opened the bandage and they said, “It’s fine, we don’t need to just wrap him around after maybe a month, or maybe six weeks.” And then after that first six weeks, after every two weeks we had to go and check. Because they were concerned about his movements of the arm and the doctor told me that “If you can just use the scar gel frequently, like twice a day for…” it was a long time, I just quit about six months ago, and they said “If you can use the scar gel twice a day, that’s fine. But if you think at any point that his movements are not that better or anything, then we will just give him a steroid injection” which I was trying to avoid. So, I used the scar gel and his movements are fine.

So, I was the one who always took him to the hospital and, after a few weeks they gave me patches and everything and they said “Now you can change the bandages at home. You don’t need to come as frequently: five, six days. So, after every two weeks you have to come back to us and then we can see how he is he doing and if, at any point, we need maybe to change the bandages, the type of bandages or anything then we’ll do it our own, otherwise you have to do it”.

How did that make you feel, having to do the bandages yourself?

It was really scary at the beginning because I was kind of even scared to touch him, but you know, I don’t know, if I will touch him, I don’t know, if I will touch him I will hurt him, and it was bad, horrible and, I was guilty. It was kind of a sad feeling and kind of guilty feeling that, you know, I was the one who did it.

Embed Print Transcript

Being discharged from care

The length of time a person will stay under the care of health services for their burn recovery can vary greatly. Some people were discharged from services soon after they were burnt, whilst others had appointments for many months and years. Rhian was discharged after 3 months, and Lily’s son was discharged 2 years after being burnt. Jessica recalled that dressing changes for her child were initially every 2–3 days, and then slowly follow-up appointments were spaced out to be 3 months apart, then every 6 months, until finally “we’ve been signed off now”. On discharge, a few people remembered being told that they should get back in contact if they had any concerns.

At the time of their interview, some people were continuing to attend medical appointments about their burns. Some had also gone on to have, or were planning to have, further treatments, including surgeries to address scar contracture and appearance.

Being told that they no longer needed to attend appointments about their burn recovery was an important moment for some people we talked to in showing them how far they had come. Chris Y and Amy commented that it was “a bit sad really” when their son was discharged as they had spent months building up relationships with the healthcare practitioners. It could also be worrying and left some people feeling it was too soon to be managing on their own. Abi had mixed feelings: relief not to have to travel long distances to appointments for her child anymore, but worry that it was “down to me now”.

Jasmine felt that she was left on her own to manage her daughter’s burn once it had been initially treated.

I said, you know, I would expect a better service for children. At least tell me the name of the creams to buy, you know. Have a little bit more education on what kind of base creams are going to heal scars quicker. Not just a “Oh go buy a cream, a water-based cream.” That’s an extremely unhelpful thing. I’d like to know if there’s essential oils that are going to help, um, if massage will help. You know, all those sorts of thing and they provide that added care. They’re just, you’re very much on your own. So, I had to research everything, speak to my friends, speak to dermatologists that were friends of ours and ask them for their assistance and they were the ones that pulled through for me to help me. I mean, the burns clinic really should be a centre of excellence for providing options for parents and they certainly didn’t do that.

It sounds like that you feel the kind of healing and recovering process and the education behind that was missing from the care you received?

Yeah, they do sort of like an ambulance service. Let’s patch it up, let’s treat it, let’s heal it, let’s prevent it from getting infected – which are all very important – but everything else, you’re on your own. You know, maybe that’s the way the system is designed, I don’t know, because like I said, this was very new to our family.

Embed Print Transcript

Marilyn felt “terrified” when she was discharged.

And when they said that's it, you don't need to come back and they took the final dressing off, I was terrified. And I said “Oh, I don't have a dressing on my arm” because I was so used to it at this point, you know, showering with this thing on your arm all that kind of thing. You know, this big like plastic thing on your arm, oh my goodness, you learn all sorts of ways to do your hair.

How did you feel when like the first few days after the last dressing was removed?

Well, funnily enough I didn't have much time to think about it because my son was getting married, so we immediately went into the wedding thing. So, I didn't, other than don't anybody touch my arm, don't anybody come near my arm, you know, just very protective of the arm, and I really didn't have much time to think of anything other than that, to be honest. So, it was a strange time.

Embed Print Transcript

Some people we spoke to were burnt as children and, because their burns were so severe, they remain under local health care and continue to attend outpatient appointments. Sinead’s daughter, Elizabeth, is still under the care of her local health authority eight years later. She attends regular appointments for things such as occupational therapy and scar management. You can read more here about the experiences of having burn injuries as a child.

Sinead’s daughter, Elizabeth, still attends regular medical appointments related to her burn injuries.

But of a normal month it’s, she would have regular physiotherapy, so she’s got quite a lot of burns over joints, which obviously affect movement, so she has to have them regularly kind of her range of movement measured. She’s quite a lot of OT (occupational therapy) input for the scar management at varying times depending on the surgery but also for her function. So, she’s had some handwriting assessments at the minute because she’d been struggling a little bit at school, so they’ve done some work with her, they’ve done some work with her, how to use knife and fork more effectively. So, she’s had quite a lot of appointments for that. She also is seen quite regularly with the ophthalmology department because she was burnt on both her eyelids. Her left eye, in particular, is particularly troublesome, her eyes don’t close properly so she ends up with quite a lot of infections, and she is seen very regularly with dermatology because she was one of the unfortunate ones that got eczema on top of her scar tissue, which isn’t uncommon, but she was just unfortunate that she’s got, it's quite troublesome for her.

Embed Print Transcript

We’d love to hear your feedback about this site. Please let us know your thoughts here.

Interactions with healthcare staff

People being treated for a burn are likely to meet a variety of healthcare professionals involved in their care. Sometimes a patient will see the...

Being treated at specialist burns services

This section covers: Being sent to specialist burns services Stays and visits to specialist burns facilities Disruption to daily life, including being a parent Relocating...