After leaving hospital, people we interviewed went on to receive various kinds of rehabilitation, including physiotherapy, occupational therapy, speech and language therapy, neuropsychology and counselling. These rehabilitation therapies aimed to enable people to get back to living as independently as possible by encouraging them to become experts in their own injury, helping them to regain mobility (either by walking or using mobility aids), speech, to take care of themselves, come to terms with their injuries and deal with mental impairments, like memory problems.
People sometimes felt they had to “relearn everything” (
Interview 23). They said it was like being reborn or going back to primary school. When people were feeling depressed and sorry for themselves, rehab sometimes gave them hope that they could get their lives back on track.
Initially, Bill felt “buoyant”, but worried about starting rehabilitation. Staff motivated him by...
Initially, Bill felt “buoyant”, but worried about starting rehabilitation. Staff motivated him by...
Age at interview: 57
Sex: Male
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Bill: Anyway but I moved to the rehabilitation unit and there was some serious mind games going on there, very serious mind games. Beneficial mind games, but I think they were beneficial.
My very first day at walking school, which was like a gymnasium where you go in and you learn how to walk again. They just wheeled me in and let me see things. They didn’t do anything the first day. A day in walking school lasts about two hours, doesn’t it? It’s not quite a day. But there’s other health issues that people have got so the day turns out to be two hour day in the gym. And the first day they wheeled me in. I was feeling pretty sorry for myself. I was buoyant at the same time. I wanted to get on with it. I wanted to get my life back.
Catherine: You were really enthusiastic at that stage.
Bill: Yeah, I was, but I was also beginning to feel the disability. So the first mind game that they played on me was they sat me in a in with other amputees and the guy next to me wasn’t even English. I don’t know what nationality he was, but he couldn’t speak English and he’d flung himself in front of the train and he’d lost both his legs above the knee, very high above the knee. He’d lost an arm and he’d lost part of his – I’m not sure which hand it was, right or left hand – but he’d lost part of his hands, his fingers. And all he had left was a leg like this. I’m sure it was deliberate, because even though I was feeling buoyant, it was like trepidation to move forward. What am I going to do now? You know, but it had the beneficial effect of actually saying, well I’ve only lost, I’ve only lost my leg. This guy’s lost two legs. And an arm. And you think, how is he going to cope? And it’s like you know, thankful for small mercies, you know, I’ve only lost a leg. Bad enough isn’t it?
For the most part, rehabilitation took place in rehab centres, hospitals or units. Sometimes people were admitted as inpatients, but others attended outpatient rehab or were treated in their own homes. Family members were often involved in organising and finding the most appropriate rehabilitation. Other people took control of organising their rehab and incorporated alternative therapies, like electric acupuncture and reflexology, into their therapy.
Marina phoned and visited the rehabilitation centre until she secured a place for her son to...
Marina phoned and visited the rehabilitation centre until she secured a place for her son to...
Age at interview: 54
Sex: Female
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So the next day a speech therapist rang, and I said to her, you know, “He’s only 21. He’s had a traumatic brain injury. He’s still not communicating and needs, has problems walking.” And she said, “Well, you know, you can’t jump the system.” But I said, “Well you know, he can’t swallow properly and breathing can be difficult.” And she said, “Okay, well have him come in for an assessment next Monday.” So I thought great, you know, at least that’s a start in the right direction.
He had an assessment of like between one a half hours to two hours. They asked us a few questions, but it was really Daniel they were focussing on, which was brilliant.
And at the end of the meeting they said, “Yes, he was urgently requiring rehab.” And they had an appointment booked within two days for him to start speech therapy. And we were so delighted. But I did feel that he was, when Daniel was discharged from [rehabilitation hospital], he was well enough to come home, but then there was a lack of the next step, and again you know, I feel passionate that without us ringing ourselves the [hospital] team, Daniel would not have made any progress whatsoever because, although we were sent home with exercises for him to do, he wouldn’t do them for us. “I’m tired. I don’t want to do them.” And because of the emotion within the family, of course, we’re not going to pressurize him. Or, you know, say, “If you don’t do the exercises then you won’t get better.” But when you have your third party and they knew when he didn’t do the exercises because they could tell by his progress.
After her brain injury, Amy contacted brain injury experts and for advice. She tailored her rehab...
After her brain injury, Amy contacted brain injury experts and for advice. She tailored her rehab...
Age at interview: 59
Sex: Female
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I emailed people because they told me that there was nothing that could be done. So I actually started emailing neuro-scientists, anyone that had something where it; it seemed they actually knew what they were doing and I found out what they were saying that worked and then what I did was I found programmes that seemed to be able to carry some of that out and I matched them to the areas of my brain that were injured because I figured that it would; it's almost like going to a gym in that if you've injured a shoulder then you might not necessarily be able to directly exercise that shoulder but you can exercise all the muscles and the ligaments and everything around that shoulder and strengthen it and protect it and then eventually get to the shoulder and make the difference. So I took all the areas like attention, processing speed, memory, executive function and I found out where I could work and kind of tailor made a plan for me and I do that a lot for people now. I do a lot of consulting in that field. And what people don't realise many times is they think that they can buy a computer programme off the shelf and if they're doing crossword puzzles or if they're doing something that says its brain training that it's going to make a difference and many times it's not. It really needs to be targeted to that person's specific deficits and those deficits need to be built for it to make like a long lasting difference because otherwise what we find is people get good at the games but they don't get any better at life which, you know isn't so helpful. Maybe they get a little bit of self-esteem but if, if those strategies are used correctly they can make, they can make massive gains.
Rehabilitation was made more difficult by the fatigue and weakness people experienced after injury. But they felt determined to work hard on their recovery outside of their sessions with rehabilitation professionals. They went to the gym, walked and swam. Exercise helped people gain strength after injury and increased their self-confidence. Since Simon A was being financially supported by his employer, he decided to treat his rehab as his job.
Physiotherapists focused on helping people to regain mobility and strength after injury, through exercise and massage. Simon B joked that at his rehabilitation hospital, physiotherapists were nicknamed ‘physioterrorists’ because they always pushed you. People who were able to walk again learned at ‘walking school’ using parallel bars. Those who needed mobility aids (e.g. wheelchairs and prosthetic limbs) were taught how to use these effectively by rehabilitation staff.
Dave describes the first time he sat in a wheelchair after his spinal cord injury.
Dave describes the first time he sat in a wheelchair after his spinal cord injury.
Age at interview: 31
Sex: Male
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Yes, I think I was probably in bed for eight weeks before I sat in a wheelchair for the first time. Getting up for the first time, you’re warned that it will be very difficult and you’ll feel nauseous and you might well pass out. You are prepared for going into a wheelchair by taking some ephedrine, which raises your blood pressure, keep your blood pressure up, because having been horizontal, to go vertical your blood pressure drops enormously. And I certainly remember taking that. I also had a binder round my stomach and abdomen to also try and keep my blood pressure up. And I think getting up for the first time I was able to do 15, 20 minutes, something like that, before you have to go back to bed and, and lie down. And you feel exhausted after that. And then obviously, you know, it was extended over the course of time and, you know, after a few weeks you’re up to a couple of hours. And then at, at a certain point you sort of reach the, the situation where you can be up all day. And then, you know, in conjunction with that was various physiotherapy sessions that you attend, occupational therapy
Being able to get around again after his brain injury meant freedom.
Being able to get around again after his brain injury meant freedom.
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Tell me about learning to walk again.
Well when it first happened I was in the wheelchair and now I walk about in here with no stick. But when I go outside I take a stick with me. But that’s probably the only area I can see definite progress in, because I went from a chair to a Zimmer frame and then crutches and then a stick. So…
Was that all with the help of physiotherapy?
Yeah.
So what kind of things did the physios do?
There were trying to strengthen my core muscles. So that was my biggest problem.
How did they go about strengthening your core muscles?
Just like various exercises like stepping up in a certain way and, you know, do various things to strengthen it.
So you had memory problems, and problems walking and problems talking. Out of those three things was there one of them that was harder than the others?
I guess the most important things that I wanted to improve was walking and talking. Walking would affect me a lot and decide what I could and couldn’t do. Also I had occupational therapy and I’ve been getting a bus to the supermarket with them. So that’s given me a bit of freedom.
Occupational therapists helped people to relearn skills (or sometimes learn new skills) that would help them live independently, such as cooking, cleaning, shopping and using public transport. They also made sure people had the aids and equipment they needed and that their homes were appropriate for their new needs. Going out in public was difficult for some people who feared they could be injured again.
When Raymond was sent to the supermarket as part of his rehabilitation, he was overwhelmed by the...
When Raymond was sent to the supermarket as part of his rehabilitation, he was overwhelmed by the...
Age at interview: 44
Sex: Male
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It was a nice little room right, quiet room in the middle of this place where which was quite quiet anyway in [place name] and I was sitting there thinking right, “None of these tests are really challenging”. In fact, I remember a few of them from the time in Rehab UK. And so it wasn’t concerning me that much, right? So then the last day the, I think it was [clinical neuropsychologist’s name] gave me a fiver, he said “Look go and get these items from these shops next door”. Straight away overdrive, I went ballistic. Because all I saw was this list, needed some items and even though there was this shopping parade shopping precinct all kind of like different shops I just went into one shop and asked them, “Do you have this, this, this” right? And I ended up spending my five pounds on two items. That just told me that that was one good example of when I go into kill-mode, right? Whatever strategy I have as a person. Number two, it’s being in a shopping environment which you’ve got all these colours, all these songs, all these sights, you can’t really focus on one thing, you’ve got lots of different areas, you know. And that was a great example of when I completely go into overdrive, if you, that if you understand what I mean by overdrive. Completely overdrive with anxiety.
In occupational therapy, Adrian learned how to cook, which was something he didn’t do before his...
In occupational therapy, Adrian learned how to cook, which was something he didn’t do before his...
Age at interview: 42
Sex: Male
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I’ve had psychologists and therapists going through to help me recover again walking again, talking again, having a lifestyle again, cooking and cleaning. What made me laugh in rehab, we’d, I was actually under BIRT, Brain Injury Neurorehab Trust, [place]. They asked me to schedule to cook and clean. I was in my Transitional Living Unit in [place], and we had a schedule for cooking and cleaning. I’m like hang on, I said, “Look you said to me, rehab is about relearning old skills that you had before. I never cooked or cleaned in my life.” They were like, “What?” I said, “Well I worked for [investment bank] the bank. I was doing long hours. I’d get in from work having got in from work say in the evening. My dinner was done for me by my girlfriend. We had a cleaner to clean the house because we were both working full time. So, I never cooked or cleaned in all my life, and you ask me to do it now.” And the answer to that was, “Tough, get on with it.” And that is fair, and that is fair, because that’s true, because I did need to get on with it and learn it for my own good. Not, not for their good, but for my good. So I know what they were going on about now, but I’d say, “Say you say me to relearn, this is new to me, I’ve done it before in my life.” I could it, but I never had to do it. Yeah.
Initially, Julie’s son was “mortified” by some of the things he had to do in rehab. At that stage...
Initially, Julie’s son was “mortified” by some of the things he had to do in rehab. At that stage...
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Julie' They did, out, a lot of that, out, working with him on crossing the roads, much to his disgust. He was absolutely mortified that he had to go out with somebody from the hospital and be taught how to cross a road and he didn’t have the insight, as Corrie was saying into the, the neglect*. So he used to get in a right hump with that and he was most disgusted. And then they used to take him into the kitchen because obviously, you know, to learn to use a knife and things, and I’d go to the hospital and say, “What did you do?” “Buttered a slice of bread,” [laughs]. And he was at that stage where he was thinking here I am at 19/20 and I’ve got somebody showing me how to butter a slice of bread. So they did work very much in the kitchen environment with him. But at that time there was a lot of concerns around hot water, kettles and cookers. He didn’t use a cooker straight away that was, his nerve damage was still quite bad then. So he did do a lot of work in that area, as well as going out and being safe.
*Wesley has visual field neglect, which means his brain doesn’t register things that he was looking at.
People learned to talk again with the support of speech and language therapists. This could take time and practice. One man (
Interview 7) thought the way he spoke made him sound “drunk and stupid”. Jamie said after his injury his voice sounded “childish”. In speech and language therapy, people were taught physical exercises to help strengthen their facial muscles. To help them pronounce words, they used tongue twisters like' “Wee Willy wept wildly as his wicked uncle whipped him”. They learned to breathe, to speak slowly and clearly, and with volume. Interview 7 had a palatal lift for several months to stop air escaping from his upper palate when he spoke.
The speech and language therapist gave Daniel exercises to strengthen his muscles, and learn to...
The speech and language therapist gave Daniel exercises to strengthen his muscles, and learn to...
Age at interview: 21
Sex: Male
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And then what about the speech and language therapy? Talk me through what happened with it?
Well, as I said like, I couldn’t, I was just trying to speak, but it was all like air. There was no like, as I am now, I can speak it now. But when I couldn’t, it was just all like air. I couldn’t like grasp at anything. I couldn’t, like even letters. I couldn’t like p’s and s’s and stuff like that, I couldn’t say it. No one could, well apart from like, they could do like exercises like, like blowing my cheeks and stuff like that, and my lips and stuff, that was the main like worries for me, and for them.
What was that, the physical…?
Yeah, like muscles, the muscles on my, my lips, my lips and cheeks and stuff. Everything, pretty much. Everything. But they kept doing it and doing it, and obviously I was getting like a little bit better and stuff like that, but they were obviously, they just didn’t stop. So I can’t explain it, but yeah, it just happened as it did. It was just, I was so glad. Obviously, like I couldn’t say what I was thinking because I was just thinking about getting back to speaking and stuff like that. I didn’t want anything else, but I could talk again and that obviously just again spurred me in as well as the – what’s it called – As well as the walking and talking again. That’s all I was aiming for.
And so the speech and language therapists helped you sort of regain the muscles control in your face?
Exactly, exactly, yeah.
And then did they work on your actual speech itself?
Yeah, yeah.
And tell me about how they did that?
Like again, like that, it was all to do with the muscles. That was all it was. Like obviously there was other stages I needed, like think about, like obviously like the facial like expressions and stuff like that. I had to, it was like the same as walking, I had to just train it all back again. Like, my, especially my lips and my mouth that was the hardest bit, than the walking again. It was more I can’t explain it, but it was so, I was trying so much, but it never clicked, if that makes sense, whereas the talking and the walking did. I just, that spurred me on so much, and then when I couldn’t talk and stuff like that I just, well I’m not going to be able to talk again well, as much as I did, but yeah. It all, it all came through, thanks to the obviously the speech therapist and stuff like that.
After brain injury, people were assessed by neuropsychologists to understand the extent of their impairments. Memory problems were one of the most commonly discussed. Psychologists also helped people to devise strategies to deal with the challenges they now faced, and some helped people to return to work or find a new role.
Jane describes the tests psychologists did with her to find out how her injury had affected her.
Jane describes the tests psychologists did with her to find out how her injury had affected her.
Age at interview: 34
Sex: Female
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Yeah. So I did probably fairly typical neuropsych testing. So I think, I had to draw some kind of diagram which I dismally failed at. To do some word association stuff and I think, there were sequences in numbers as well I had to do. So, I think I couldn’t do very many. I probably maybe five or six numbers which is definitely a lot lower. So I’ve got a psychology degree, so I’d done that sort of stuff in first year psych and I know that [laughs] I know that I was like above average back then so, so, yeah, I think, yeah, it was pretty tiring. That’s about all I remember as well.
And I mean the psychologist had tried to establish, I mean it’s always difficult, I guess because no one gets that testing done and has a baseline, you know, at 18 or whatever, so we don’t really know what we were before, but he tried to establish how smart I was I guess, and you know, I had a degree, what grades did I get at university, you know, what did I do for a job, that kind of thing. I guess to establish may be where my intelligence was prior to the accident. So it was, yeah it was quite, for someone I think who’d always had good memory, I’d always had a good memory, I’d always been pretty sharp and you know, I wouldn’t say I was always a very, very high achiever, but you know, I’d done very well in some subjects and school and you know, it was quite hard actually, like I was quite scared afterwards to do any kind of quizzes or board games or anything like that. I was actually quite scared because I knew that I’d like to win, and I wouldn’t be winning [laughs]. So, you know, so, yeah, and I think the first time I did do, I was playing some sort of game on a Playstation or something with my neighbour and I knew I was impaired, I knew I wasn’t as good as what I would have been, but I think I still beat him [laughs].
People we interviewed who experienced mental health issues after injury were referred to psychiatrists or psychologists and/or admitted to mental health units. They had cognitive behavioural therapy (CBT) to help them “rewrite the soundtrack” (Jane) in their head and to manage the thoughts they fixated on. Part of one man’s therapy (
Interview 23) involved gardening, which also gave him skills he could use to find employment. Some, but not all, were offered counselling to deal with the trauma of their injuries. Those who declined it said they preferred practical help. Amy was offered psychological help, but rejected it because she wanted to learn practical skills to help “fix” her brain.
Although he attended counselling, it did not help Bryan as much as knowing he could have an...
Although he attended counselling, it did not help Bryan as much as knowing he could have an...
Age at interview: 36
Sex: Male
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Basically my boss at work said, essentially, “You need help. I want you to go to your GP. If you won’t speak to your family or tell anybody what’s happened to you, you need to go to your GP and you need to arrange counselling”. So I did that. And it wasn’t particularly successful to begin with because the guy would be picking up stuff about relationship break-ups and stuff like that. I was just sort of looking at him going, “This is nothing like a relationship break-up, trust me”. He was trying his best, he just hadn’t have dealt with me before. I had requested at the GP specific counselling to do with head injuries and they said, “We can’t do that. We only have generic counselling, so you either take it or leave it.” And so I said, “Right, I’ll take it.” And it did gradually improve as my mood gradually improved. I was able to start smiling a little bit again and the counsellor noticed the difference in me by the end of it. Without wanting to be at all judgemental of the guy, critical of him – because I don’t think it was his fault at all – that wasn’t because of the counselling I don’t think. That was because external factors helped me improve, such as knowing I was going to be able to get an operation on the ear.
It was important for people that the rehabilitation staff they worked with had specialist knowledge of their type of injury, but staff usually had not experienced a life-changing injury. Through rehabilitation, people got to meet others with similar injuries who sometimes became friends. They often felt “lucky” because they realised there were others with more serious problems than them. Some met ‘expert patients’ who had similar injuries and told them about struggles and pitfalls they may face, and how to avoid them.
Meeting other people with spinal injury was encouraging for Simon B. They gave a personal insight...
Meeting other people with spinal injury was encouraging for Simon B. They gave a personal insight...
Age at interview: 42
Sex: Male
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Yes, it’s tough rehab, really tough. And it doesn’t stop when you leave hospital, it starts, so you’d better pay attention while you’re there.
I suppose you know, you sort of, you don’t get a chance to practise it in hospital?
No.
Well at least not in your real life situation?
No, not at all and also the therapists are able-bodied. They know the theory, they know the clinical side of it, but they’re not actually doing it themselves and that’s where the expert patients do come in, because they are the ones that say, “I had to learn. I had to struggle. I fell on the floor. I got it wrong. But eventually I got there, and these are all the pitfalls, these are all the problems and these are all the tricks and short cuts to speed that process up. So rather than doing like I did, you know, taking years to get independent, if you can shorten that process down, then you can move on with your life and get back to doing all the things you want to do, which is, you know, work and going out and whatever it is that you…” You know, for me it’s travelling, and cooking and going to the pub. You know, going to gigs. For other people it might be something really different. But getting back to the important stuff and not being bogged down in never-ending rehab.
Those who were rehabilitated in hospital described both the physical environment and the culture as ‘disabled friendly’ (Nick Z). But going home was quite a difficult experience, especially if people required more support and their homes had not been modified to suit their new needs. Simon B said that rehabilitation really starts when you are discharged.
Hospital is an unrealistic environment and Dave said his rehab continued when he left it.
Hospital is an unrealistic environment and Dave said his rehab continued when he left it.
Age at interview: 31
Sex: Male
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And the whole rehabilitation process is gearing you up to leave hospital and resume as normal and healthy life as, as you can outside hospital. And I would say that your rehabilitation continues really way beyond hospital, because hospital is quite an unrealistic environment. It’s, it’s a flat area with nurses and, you know, hospital equipment everywhere. And out into the real world is quite different. So I think, yes, your rehabilitation starts in hospital, but it, but it also carries on when you go home.
People said it was important to practice their rehabilitation in their own time in addition to their sessions because staff could only help so much and the rest was up to them. They were determined to do their best in rehabilitation and felt that the difficult time and the effort they put in during the initial stages after their injuries would pay off in the long-term. They often lost their self-confidence after injury and said undergoing rehab helped them to regain it. Rehabilitation is hard work, requires perseverance and can be a frustrating time, but people were encouraged by the progress they made.
Rehabilitation provided many benefits for Simon A. Most importantly he felt he was contributing...
Rehabilitation provided many benefits for Simon A. Most importantly he felt he was contributing...
Age at interview: 46
Sex: Male
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And also it gave me self-confidence which I’d lost completely. And it gave me a sense of, contributing towards my recovery and I was actually actively doing something to, or I could see, I could see each day that I was making progress. I was getting fitter. And it was helping me relax as well afterwards I would say.
At the time of their interviews, some were still in rehab and they hoped they would continue to improve. People still faced challenges, but continued to learn new ways of dealing with them, although they didn’t want to have to do rehab forever. They were grateful they were able to access rehab on the NHS, but worried about the lack of funding for rehabilitation units. People were often supported in their rehabilitation by their family and friends and paid carers sometimes took on a physiotherapy role, helping people with their exercises.
See also ‘Making homes accessible for aquired disability’, ‘Mobility aids for physical disability’, ‘Challenges and strategies after injury or aquired disability’
Last reviewed October 2015.
Last updated October 2015.
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