Support for people with life-changing injuries

After a life-changing injury people may wonder how they will ever be able adjust to their new way of life. People we talked with often found support from various sources including their family, friends and work colleagues, other people who had experienced a similar injury and from national and local support organisations. They also took on the role of supporting other injured people.

Support from family, friends and work colleagues
People often said that their family and friends were invaluable in providing the daily practical and emotional support they needed for recovering and to managing the challenges they faced after injury. Christopher said his wife had been “instrumental” in his recovery from his brain injury after a ski-ing accident. Family were often at their relative’s hospital bedside and were told by the doctors what the implications of the injury might be. They sometimes flew out to the country where the injury had taken place. After Daniel’s brain injury his family and his girlfriend spent every day he was in hospital helping him to learn to talk and walk again, which he said had spurred him on to recover.

Nick’s family flew out to Spain when he broke his neck after a motorbike accident. He was unaware…

Age at interview 49

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And what’s your sort of first memory after the accident?

I vaguely remember my wife being around. So, I subsequently found at that she flown out to Spain the evening of my accident. And I can remember being convinced that the nursing staff were trying to kill me. I subsequently found out that that’s quite a common experience for people who are taking powerful drugs, which I was. So those were my abiding memories of hospital in Spain. I don’t think I was aware of what was happening to me, or what had happened to me at that stage.

And were you awake and on the ventilator?

Yeah, I think I was conscious some of the time on the ventilator. I think my conscious state was highly inhibited because I don’t think I could really make sense of the situation that I was in and I don’t really remember an awful lot about what happened to me there. I don’t even remember an awful lot about, you know, my relatives – my brother came out, in addition to my wife. My sister-law was there as well, who happened to live quite close to where I had my accident in Spain. But it was only after the event that I was told a lot about their involvement.

And what was their role and their involvement at that stage?

Well my sister-law speaks fluent Spanish. And her, an ex-boyfriend of hers was a doctor, a Spanish doctor, so they liaised between me and my wife and brother, and the people in the hospital who, none of whom spoke any English. And my wife and my brother were obviously keen to find out as much as they could about what had happened and what my condition was and their primary interest was to get me back to the UK, which wasn’t at all a straightforward matter. Again, I didn’t know anything about that at the time, but I subsequently found out, it was exceedingly difficult to get me repatriated.

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After coming out of hospital family and friends helped with many day-day things, including memory problems, personal care, using the telephone, finances, mobility and by being an advocate to make sure they got the things they needed.

Joe’s friend who is blind showed him how he could manage his deafness better and how to listen…

Age at interview 53

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About two years back I had a friend who is blind. I met this man who is blind and he taught me, well, in observing him, the way how he dealt with things. It really showed me that when I was like pitying myself and thinking that, Well I can’ and he showed me that well, just the way how he did things, it can be done, it’s the way how you apply yourself and we became friends in the last two year. And just observing him, just gave me a different way or different attitude towards, because I think the worst thing was when the doctor said, you know, There is no cure for what you have and this is something that you will have to live with for the rest of your life And yes, I must admit it did really throw me off. And I was depressed for many years really, until…And the difficulty was like to communicate with people, especially younger people.

And then I thought, Well you know, this is something to get over. And he basically taught me how to listen more. I had forgotten how to listen, because I went totally deaf in this ear and I was slightly – in my right ear – and I was slightly deaf in my left ear. Now I can hear better in my left ear and I do have regained some, some hearing in my right ear. And I do have a balancing problem.

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Since his brain injury, he finds it difficult answering questions when talking to someone on the…

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I get frustrated and that’s why I go through things like angry and frustrated and take it out on people and…It’s not nice. But I’ve got my Mum, [name] and [wife’s name] and my Dad, [name]. Yeah, it’s great to have them behind me, yeah. If I had no one behind me, I just don’t know which way I’d go. I think I’d go the opposite way and drink, drink alcohol and try and forget everything. But, you know, there’s no need for that. It’s trying to get on with our life and trying to get back to what you were whether it happened or not I don’t know. So sometimes it’s frustrating yeah.

I can’t get onto a scaffold no more, in case I have an epileptic fit. That’s another reason. So they’re the anguish things. And trying to use the telephone to speak to people properly. When I phone up a bank on line, you know, over my phone, my wife, I have to hand it to my wife, she will do it.

Why is that?

Why? Because I just don’t know much. I have to keep saying what? What? What? What? What? What? What? What? Because it doesn’t store. If it was you, it would go into your brain, you’d know exactly what he said, you can say something. With me, shoo, shoo, it doesn’t happen with me. That doesn’t happen and that’s horrible. That is horrible. If they say, when [wife’s name] is speaking to someone, on the phone to someone like my accountants, or someone like that in the bank, they’ll ask me a couple of questions, what’s your date of birth which I know – your name, your address. Simple. Hand it over. I can do it. I’ve tried to do it when I was at the [rehabilitation hospital], I started to learn how to use the phone again. I done it for a while. It was great, but it’s trying to understand what people are saying at the other end of the phone, People think, you know, you’ve got a brain there. I don’t know, it’s hard. It’s hard. It really is. It really is. It really is. Yep.

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It was common for people to say that their family and friends had helped them emotionally when the challenges of recovering from a life-changing injury led them to sometimes be depressed, anxious, angry and frustrated. Simon’s friends had a “can do” attitude and had helped him to rebuild his confidence during his recovery from the spinal injury he had when he was twenty-five. After her mild brain injury, some of Jane’s friends and family were not as understanding as she would have liked them to have been, but she greatly appreciated a friend who helped her to develop strategies to manage her anxiety. Some people also said that they had tried to give strength to their family or friends by reassuring them they could recover from their injury.

Nick Y’s son, Jamie, also had a life-changing injury and has given his father a lot of support.

Age at interview 68

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My main feeling in the hospital, not suicidal exactly, but incredibly depressed. I knew something really serious was wrong and so it seemed that my life was going to come to an absolute stop. My son, doing up my house, sailing my boat, riding my bike, seeing my girlfriend, my woman friend. I mean all these things that I’d retired to do. So it was a very depressing time, extremely depressing. I was absolutely very depressed, and I owe a lot to my friends and particularly my son for trying to cheer me up.

Anyway when I was in hospital he sent me a succession of texts on the mobile and he writes in this really strange style. He’s got a language all of his own, he really has. So I typed them up because I want to keep them. So this is a guy who’s quadriplegic, in a wheelchair. So this is February 11th, this is the day after the amputation or a couple of days after it. Bonne nuit, goodnight, or good morning, amazingly brilliant Dad, Please keep motivated, be strong, as in the near future I’m looking forward to being your boson crew on the boat we’re hounding. And only if you think I’m capablerdquo; I can’t read it. I still can’t. Only if you think I’m capable of additionally being a co-pilot for our boat, Be it in sunny Cornwall or elsewhere I can’t read it. I really don’t mind. Because is no matter life’s little injuries thrown our way we’ve strongly survived and we’re together wherever we are I can’t read it. Sorry. It was so nice I couldn’t believe it. He really wrote that from the bottom of his heart. We’ve strongly survived and we’re together wherever we are I won’t care or mind. Lots and lots of adoring love. Jamie xxxxx Yeah. And I’ve scribbled a note here, Cheered me up reading this going to and fro the hospital by ambulanc. This is when I was going back and forth to rehab yeah.

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Some people’s families had received professional emotional support after their injury.

Counselling helped Jack’s parents to deal with his car accident which led to his leg being…

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Has there been any support for them or for you in terms of coming to terms with this?

My plastic surgeon referred our family, well me first, to a neuropsychologist or a neuro… I can’t remember the technical term he had. So I had a meeting with him, and he deemed that I didn’t require any counselling or anything like that, which I totally agreed with. I kind of said I don’t want it, so don’t bother, don’t waste your time. And then I said to him, "My Mum and Dad though are having trouble" – this was earlier on, I think this was within the first year – they were having trouble dealing with it. And so I mentioned that and he said, "OK I can invite them, we’ll have a meeting with them, all three of you. First separately, then your Mum and Dad together, and then all three of you together". And they then had further counselling, which I think has helped them. The support network of the family has helped. But now that we look back on it we are actually stronger all of us for having gone through what we’ve been through. And now whenever our family are going through something like an event or whatever they turn to us or for that strength. We have become the strongest family in our circle of people as it were. We are the strongest family. We are viewed as the strongest family, which is a credit to us, I think. So yeah it was minimal support. Yeah I would argue minimal support. We’ve kind of dealt with it on our own but we’ve dealt with it. And I also think that without sounding arrogant the fact that I’ve dealt with it and achieved quite a lot has helped my parents as well so and my sister so. Yeah I think it’s really good.

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People also received support from work colleagues. Brian was “over the moon” when his ex-work colleagues bought him an electric wheelchair when he first came out of hospital. Bryan hadn’t told many people about his second head injury. One day it all became too much to deal with and he broke down in tears in front of his employer, who was very supportive.

Support organisations and groups
National organisations were often an important source of support to people after life-changing injury. Sometimes people were told about them by the medical staff when they were still in hospital and the support they provided was often seen as important in their recovery. Some of the problems they were helped with, included finances, legal issues, transport and mobility problems, and respite care.

The support Rob had from St. Dunstans, a charity that supports blind veterans, helped him to cope…

Age at interview 24

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I also had my own issues to deal with. I just had to, you know, deal with stuff myself, just in my head and sort myself out. And, St Dunstan’s again. I mean they bring you through those doors and they introduce with a bunch of buys who have been through exactly the same thing as you, and they’re all ex soldiers so they have, they have, you know, the Army banter and they, they just don’t let you get down. They just help you so much deal with it. I mean there’s so many people to talk to there and people with a real understanding of what you’ve been through. Yeah, the camaraderie and the banter and everything like that, is just, it’s just amazing. it’s irreplaceable.

And how did, you know, other people in your life – family and friends –

hm.

How did they sort of come to terms with it?

It was tough on everyone. I mean, the majority of people in my life, and my family saw me, and the first thing, well before they saw me, they felt so sorry for me, and they were absolutely devastated for me. Like, they were sad, because they thought I was going to be sad and that was, that was just making them like really sad and depressed. But they saw me and me being positive and when they see that it helps them. it’s, they feel like they don’t have to be sad for me and I hope that’s what I get across to them. I mean, I can tell they’re upset with what I’ve been through, but they love me and as long as I can show positivity and you know, deal with my situation then it helps them get through.

And are you consciously, or have you been consciously more positive than you felt for them? Or have you sort of naturally been positive?

A bit of both really. I mean I have, overall, since it’s happened – it happened about a year and a half ago – I would say the majority of time I have been positive, but there are weeks when you just, you do just feel completely down in the dumps, and it’s tough and, I mean, you can’t really hide that from the people you love. it’s too difficult to, they know you too well to really hide it. So it’s best just to get it out there and express your feelings and hopefully they can pick you back up and make you realise that you know, life’s good.

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After his spinal injury John attended a course run by the Back-Up Trust on using a wheelchair. He…

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But I’ve been on Back Up course; that helped me domestically. I went up to a place near Scotland and I done a Back Up wheelchair course to help me out, because after the operation I was really down and crying, and trying to find something or some way around what I was going through at the time. All I kept doing was breaking down all the time, and crying.

The Spinal Injuries Association was great with us. He used to come where I was in hospital. I think it was every month. It was every third week he’d come to the hospital and I used to wait for him, be glad he was coming. When they said he was coming, I used to look forward to his company, because he told you how it was. He told you the truth. And how it was going to be. And how everything would be. And he gave me a lot of different things and contacts, like Back Up. He said you can go on Back Up groups or you go away. They teach you wheelchair studies, and he said about Motability driving. You’ll go to [place name] for your driving test and you want to try and get your licence and it gives you that more, bit more freedom, and which it has done. Because I know I can just go to the car now, I’ve got to get the wheelchair in obviously, but I’ve done all that. I was doing a lot of that yesterday. About eight times I’ve got it in and out the car.

And how did you first come into contact with the Spinal Injuries Association? How did you find them?

The hospital requested them to come. And then [the support worker] he was coming every third week and I used to look forward, and I used to go and see him every time. He didn’t come just to see me, he come to see other patients, but I always used to meet up with him when he was coming.

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Kenneth is a volunteer gardener at the Thrive charity. Having something to focus on physically and mentally helps him to cope with his brain injury.

It was common for people to say that talking to others who had experienced a similar injury was invaluable. Talking to people who understood what they were going through and hearing how they had coped after a life-changing injury had provided them reassurance, encouragement and support. Support organisations like the Spinal Injuries Association provide people with the support of a mentor, someone who has been there and can talk to them about their experience of injury. Some carers went along to local groups with their relative and they also gained support from talking to others at these groups. A pub psychology group helped Juri after his vision was impaired. Run by a psychologist, people talk about their problems at the group and are given ideas about how to cope.

Talking to people at Headway, a brain injury charity, gave Daniel reassurance and helped him to…

Age at interview 21

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Why are you happier now then a few weeks ago?

Mainly with, what are they called? Headway, like I’ve got more, I would say kind of reassurance and stuff like that. I’m more like talking with people and to people. Basically how, kind of what I’m doing right now, just talking, talking, but in a way it’s a good thing because I know. I feel, as I said before, happier now that I can talk to people or people can talk to me about it. And I feel more relaxed, if that makes sense, yeah, more relaxed than a few weeks ago, where I had no one to talk to and no one to listen to or everyone was just I don’t know how they could tell me what’s going to happen and stuff like that didn’t have a clue.

So what makes Headway so good?

They just reassure me. Like basically when I come and visit them, all the time I just, I just feel more again happier. Like, I can get through it and if I do I know people to talk to and for them to talk to me or either, both of them even.

Do you think you’re going to have another seizure?

Oh I used to think that all the, every day, every minute, like before I started getting hold of people and like again Headway I just like, oh no, when’s the next one? But now with them reassuring me and stuff like, I could have them forever, or they could stop now. Do you know what I mean? But now I’m just thinking present. So not thinking tomorrow, am I going to have a seizure it’s thinking now. Like, if I have one I have one, and if I don’t, I don’t. And we just go on every day without thinking about it, which was the biggest problem that I had to deal with basically other than walking and talking but that’s gone now. Now it’s something else. But yeah. Hopefully it’s, just hope but not in a what’s it called? Not in a way that I’d just be so anxious, which I used to be. Like not, like in the sense about a month ago, two months ago I was so anxious, and now I’m starting to deal with it.

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Barrie felt that everything was against him after his brain injury. His local Headway group…

Age at interview 53

Gender Male

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Why don’t you tell me about what Headway means to you?

Well we, my band for example are doing dance marathon this year.

You’re doing what?

They have a dance marathon, a fund raising thing, to support people with traumatic brain injury, acquired brain injury basically. The last two years we’ve done the our band has played the dance marathon as part of the fund raising thing and this year they are doing it again. And it’s to help support people with a brain injury. I mean I’m supporting people who are in a similar situation to me, you know. Everybody else has actually made me realise what the reality of a brain injury. Because that’s why that’s what I was saying about that documentary injury about My New Brain. When I realised that someone else had exactly the same thing that you’ve had, you know, that’s, that’s what Headway really has meant to me. Because it’s brought the whole thing home to me, made it real. Do you know what I mean?

Did you feel like you were the only one who had that experience?

Oh definitely.

…when you first were injured?

Yes, definitely. It was everyone was against me. It was only me with a brain injury, it’s only me this. It was all me. The whole world was against me. That was what I couldn’t understand, couldn’t see people were helping me. I just couldn’t see. They were all against me. Because I don’t know why, but that’s how negative you were, you know. That’s why you have the depression, anxiety, stress, all of that. Not good.

Okay and what sort of support does Headway provide for you? Or did Headway provide?

Well Headway I’ve been more supporting in Headway I think rather than actually them supporting me. it’s made me realise the whole reality about things, you know what I mean?

Yes.

Headway helped me get rid of the Court Protection I didn’t need. They told me what solicitors to use, you know, how to actually go through the process. They helped me in that regard. Headway, well I think basically just being here has been the help, you know, what I mean because you’re actually, because you’re with other people, who are a lot of them are far worse than I am. You know, mobility wise, speech wise, that’s what’s helped me in Headway. Headway staff help me. You know, if I had any problems I’d ask them this, that and the other, but it’s more being here that’s helped me. Do you know what I mean?

Okay. Why is that?

Because you’re with other people, you can see, you’re relating to the same problems they’ve had and they trust you because you’ve been through the same problems they have. Do you know what I mean?

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Sharing her feelings with other people who had experienced burn injuries at the Changing Faces…

Age at interview 31

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Is there anything that you want to say to health professionals, doctors, nurses, physios, OT’s, anybody sort of that you’ve come across in your care and treatment?

I think that they need to look at the social side of it really. I think that the isolation that people experience for whatever reason after the accident is one of the biggest hindrances. And that state, that emotional state of mind can prevent a lot of things from happening and it’s really, really difficult, I think, for people that open up and share their experience. One thing that helped me was that I’ve been to some burns groups. I think I’ve been to one at Changing Faces and that really helped me, I think. When you’re with somebody that’s shared a similar experience, you can open up on a different level and it brings great relief, so they need to encourage people to do that. Yeah.

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Not everyone felt they needed to attend a support group or organisation. Both Christopher and Bridget had brain injuries and initially felt they couldn’t relate to other people at Headway who had more severe injury effects than them. It was only when Bridget’s friend also had a brain injury three years later that she went along to another Headway group and now she chairs it.
Sometimes people had got involved with local support groups and organisations to support others who had similar life-changing injuries. Barrie volunteers at his local Headway support group where one of the things he does is help people with mobility problems use the computer. Others took part in fundraising and research.

Adrian regularly volunteers at his local Headway group. After giving up work following his brain…

Age at interview 42

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And what’s Headway mean for you?

Headway’s awesome. Headway East London. Again affiliated to Headway UK. They’re part of Headway UK, but they’re not; they are separate. It’s a great place. It’s a real joy to work there. Because it’s a job, a voluntary job, but it’s a job. And it’s a job I enjoy doing. They need. But it’s a real job, when you walk in the door there’s no labels. You wouldn’t know on the floor who’s a staff member, who’s a volunteer, who’s a member. You wouldn’t know. And because of that it really works. There’s a real community feel about it. If you want to find out who’s who the picture board is up, so you can find out if you need to, but it’s not important. And it makes it really work and it ticks along nicely.

We have a volunteer meeting in the morning, so it’s all about what the want is, we’re told whose doing what, who needs to be where, what the risks are today. And it’s just so, it’s an encouraging place to be. It’s a real can do atmosphere. It’s not, do you want to do this? We’ll see. You can do it, but when? It’s that kind of atmosphere. Yeah.

Yes. And so what actually do you do there?

As a volunteer I take part in the group sessions, so I will be there to assist members discussing certain what we’re doing in the groups. I get lunches. I lay tables. I tidy up after the lunches. I’ll help people to and from the toilet or going to and from getting smokes. It can be a real variety. Also I’m taking part in the Discovery Project. The Discovery Project’s part of Headway and it’s trying to enable people with injuries to do certain things outside of Headway. So I get involved in that, doing time-banking, entering into a PC.

So volunteering has got a structure, but equally hasn’t I go into Headway not knowing how my day’s going to be. I know roughly, but I don’t know and because of that it’s a real pleasure. But it’s encouraging because its voluntary I want to be there, and it’s nice. It’s really encouraging place. It’s not, if you want to do something it’s not, shall we see? It’s yes, but let’s see how we do it. You know, it’s good. It’s positive. I like it yes, yes.

You’re a volunteer now?

Yes.

Did you start being a member of Headway?

No I actually joined; I joined initially as a volunteer because, as I say through my insurance money, I get paid no matter what. I’m not looking for a job. I’m looking for a purpose. Headway when I was in rehab in [place], Headway North London, came to do a presentation about who they were, what they did, what services they offered to try and find members for the future. So through finding them there, I thought oh Headway. Let’s find out who they are. When I left rehab in 04 who, which one’s the nearest Headway to me? Oh Headway East London, okay. I went to an interview there and was accepted in as a volunteer. So it’s just purely by them being there while I was in rehab, I knew about them.

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Through her art work Louise has been helping other people with burns injuries to feel comfortable…

Age at interview 31

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Okay and does the project aim to satisfy sort of personal needs? Or is it for something different to that really?

It started off purely personal need, for me, about myself, just purely sort of aesthetic and therapeutic. But once I started to show the work, I realised the impact it was having on other people. Not just sort of aesthetic, but like emotional impact. The relationships people have with their bodies and the way people consider their body image, I think anyone can relate to that. But then once I started to get press from it. I was getting a lot of emails from burns survivors and so forth saying how liberated they felt to see the images, and how they felt it was a voice for them, because the main thing is everything’s internalised and there just doesn’t seem to be any way of getting out of that isolated space. Very difficult to share your experiences, and somehow people felt, some people felt more inclined to show their scars and felt more proud of their bodies as well as a result. So I think that spurred me on to bring the work more into a public field and keep going, because people were encouraging me to keep going. They really liked it, so, yeah, that really accelerated one part of it, and then I realised that the stuff that I’m going through is making a difference to other people and I’m still working stuff out and I’d like to work maybe with some other people, other burns survivors and see if surely that process of just looking and seeing that can make you feel more comfortable with what’s actually there. I think it is actually a tangible process.

How does it make you feel to know that other people benefit from your art?

Yeah. That’s been really great. I mean I had emails from all round the world; there are two or three particular things spring to mind. One was from South Africa, these two girls, they were from an organisation called Children of Fire like with all these like young people that experienced burns and a lot of them were orphans and to have reached that. You know, with the internet things go that farther afield. And those girls said to me, Part of recovering is like possibly finding out what happened to me So I’ve got advice from people and it’s kind of like a shared thing, which is really, really nice.

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Relationships with children and family

The ways in which life-changing injuries affected relationships with children and other family members varied. In some cases, the injury caused damage to relationships. As...

Information on life-changing injuries

People we spoke with commonly had little or no previous experience or understanding of life-changing injuries before their injury and so entered a world that...