Life-changing injuries
Support
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.
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...
Nick’s family flew out to Spain when he broke his neck after a motorbike accident. He was unaware...
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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-in-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-in-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.
After coming out of hospital family and friends helped with many day-to-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....
Joe’s friend who is blind showed him how he could manage his deafness better and how to listen....
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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’t” 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.
Some people’s families had received professional emotional support after their injury.
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.
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...
The support Rob had from St. Dunstans, a charity that supports blind veterans, helped him to cope...
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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.
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...
Talking to people at Headway, a brain injury charity, gave Daniel reassurance and helped him to...
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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.
Barrie felt that everything was against him after his brain injury. His local Headway group...
Barrie felt that everything was against him after his brain injury. His local Headway group...
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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?
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...
Adrian regularly volunteers at his local Headway group. After giving up work following his brain...
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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.
Last reviewed October 2015.
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