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 was new to them. The amount of information they wanted both immediately after the injury, and in the longer term, varied. Sometimes people did not want any information, particularly early on as they were afraid of what they might learn, or they were in denial about the extent of their injury. A few people described information as “boring”. Others wanted information, but sometimes found they had to search for it themselves rather than be given it by health or social care professionals.
Nick is married with three children, aged 12, 11 and 5 years old. He worked in business development, but has not returned to work since his injury. Ethnic background' White/English.
Well what I found is, very, very little is known about spinal cord injury outside of the very small community of sufferers and specialists. So, for instance, as I mentioned my wife is a GP, but I don’t think she’s ever had a spinal cord injury patient on her list. The surgery that I’m with haven’t got another one. So, there’s no expertise. The district nurses who come to see me I think they do have a couple of other spinal cord injury patients, but the nurses who look after me, for instance, have no personal experience of bowel management, so they’re unable to provide any advice or assistance with that. So and the knowledge in the world outside of the health care industry is even less. So you know, I realised that before my injury I don’t think I’d ever known anybody in a wheelchair. I certainly didn’t have any friends or family or colleagues or associates or anybody who I came across regularly and even I don’t remember having come across anybody in a wheelchair at all.
So you know, you are a fairly unusual person, and especially with spinal cord injury, there are so few of us, that, you know, there is very little knowledge or understanding of your condition and you do have to rely on, you know, other people who are injured or very small number of health care professionals who have chosen to specialise in this area.
There are, you know, there’s a certain amount that you can get off the internet. There is, you know, there’s some charities, there’s the Spinal Cord Injury, well sorry, it’s the Spinal Injuries Association, the SIA. Generally speaking you’re in a very small population and for the most part you have to look after yourself.
Age at interview:
Barrie volunteers at Headway and Age UK. He is single, lives alone and his ethnic background is White English.
For about, I would say for about a year I was. First year I didn’t want to know anything about anything. After that I started looking at what a coma was, what a subarachnoid haemorrhage was, what difficulties you are liable to have? I would actually look on the internet for blah blah blah, everything you know because I wanted to know everything about it, whereas before I didn’t want to know anything. It is just denial. You’re unaware of your difficulties and you’re in denial of the whole bloody thing.
And so what made you start to look into what had happened to you?
Well, Headway was one of the things that actually started the process, because friends of mine were looking out for like brain injury support groups in London and they found the Headway website. And I went to Headway, when it was in [street], which is near [another hospital]. And actually realised that, there are more people around far worse than I am. And it actually brought it to reality. Then after that, then I started looking round for things, and looking at what this actually was. Because you then become to accept that you’ve got a brain injury. And you are basically disabled in one effect; that’s what you are. But you won’t accept that before that. Because I’m all right you know. Why am I in hospital? I’m going home. Goodbye.
Many people were so unwell at the time of the accident that information was given to family members. Marina, whose son Daniel was in a coma for around three weeks, said “my heart used to plummet to my feet” when the doctor came to speak with her, she was so frightened of bad news. Family members continued to look after information for some people who preferred not to know too much, or found it difficult to process or retain information. People with brain injury, in particular, could find information overwhelming. Wesley said if he needs to know anything “I just ask my Mum”, but one man (Interview 23) felt angry and frustrated that he was unable to “store stuff in my brain”.
Wesley is single. He was living with his mum at the time of the interview, but was in the process of looking for a new place. He works as a dustman. His ethnic background is White English.
I just don’t remember anyone else. I just think that’s the memory from the head injury that I just choose. I think it just chooses not to remember them sort of thing.
I wonder why that might be?
Something to do with the brain I reckon.
Okay. It might tell you that in there.
Oh it probably does. I haven’t, I’ve never actually read it.
So do you want to explain to me what you’re looking at?
This is the, the RRU discharge summary. This tells me what injuries I occurred and what things can help me and so things, like I had problems with brain and everything. It says in here the things I can’t do as well as what I used to be able to do. Yes. The ...
It’s quite a detailed document isn’t it?
Yes. No, I don’t know, what did you ask?
No I just asking you explain to me what that was you were looking at.
It is the [Regional Rehab Unit name] Discharge Summary, which just confirms what problems I have and that I’m still having difficulty with a bit nowadays. Yes.
So I will be looking at that on a few occasions.
Okay do you find things like that are helpful?
Not really because I forget about it. When I wake up tomorrow morning and this won’t be as we’re doing it now, I won’t really remember it like that. You know, I’ll think that’s it, have a quick wash, get me clothes on, have a cup of coffee, go to work, work all day and it will just be another day. It will just be another Thursday at work for me and this will just be a distant memory. Not out of choice, but just because it’s pushed to the back of my brain, sort of thing.
Age at interview:
Ed is married and has a son who is five years old. He works as a business manager for a large bank. Ethnic background' White/Other (Jewish).
The information that you got about your brain injury where did it come from and what was kind of thing you were being told?
Well, initially stuff was coming off the Headway website. And then the consultations with neurologists and it was that sort of level of information. And the thing about it is that it’s all fairly sort of wishy-washy. You can’t put a time scale on it. As well as that, I spoke to a very good friend of me, his now wife had had a very serious horse riding accident and basically she turned round and said, “Listen, I had to stop, I had to take six months out. Take six months. Don’t take out the corners. Take six months. There you go. Period.” I went, “Right okay”.
And it was actually, it was very similar, because it was, I remember many years ago, I was chatting to actually her husband, my friend and we were talking about sort of house purchases and house sales and he turned round and said, “Whatever happens it takes three months by the time that people have, you’ve engaged the estate agent, people have been round to look, offers have come in, then the conveyancing starts, the mortgage applications etc., etc., etc.. for exchange and then completion it always takes three months. Guess what? It always takes three months. Head injuries, well, his wife turned round and said, “It always takes six months.” I’m pretty sure it does actually. I’ve read up on James Cracknell’s website and his antics, especially since he was clobbered off his bike in the middle of the USA by that truck. And yeah, six months again, and then additional healing on the back of that. And, so, you know, I take from that.
Likewise a friend a Sarah’s, or a work colleague of hers, her husband had a cycle, a mountain bike accident again right, this is how it works, he had x-months off. He was a major in the Army so it wasn’t exactly that he was like sort of oh I’m not bloody...you know, he was fairly sort of robust, etc. And then went through a period of slowly back into work, whereby he would be taken to work, work half a day, then taken home, etc., etc. Again, and so looking at these sorts of experiences from other people as well as professional experience from sort of doctors that I’ve been seeing etc., etc., and doing a little bit of research on the internet it’s all started giving me more information and that’s basically where I’ve got it all from. It’s no sort of, there’s no one stop shop. You’ve got to be fairly resourceful in getting it.
The type of information people (and family members) wanted varied. It could be information about treatment options, benefits and entitlements, seeking compensation, their particular injury and the symptoms associated with it or information about ways of improving their health.
Information was given to people by various health professionals, including consultants, occupational therapists, prosthetists and rehab specialists. Several people said they would have liked more information from their consultant, particularly around treatment choices or after-care, and information about benefit entitlement from their GP. Jack said he felt “they just amputated me and got me out the door”, while Juri said his consultant advised him not to trust anyone who offered to cure his sight loss. Some people who had a spinal cord injury found the information and skills taught in specialist rehab centres “second to none”.
Information could be given verbally, or people were given leaflets or recommended books. People also found out information through the internet and support groups (with both information provided on and offline).
Nick is a retired chartered surveyor. He is divorced, lives alone and has two children, age 37 and 35. Ethnic background' White English.
My main recollection after that is of waking up every morning to a group of medics and the doctor would be saying to me – I was quite drugged up and still in a lot of pain – and they started saying to me, “Well, Mr Black, you can either have a reconstruction, or an amputation. It’s your choice.” And I just remember saying, “Don’t be stupid, of course I want a reconstruction.” But as the days drifted by, it became increasingly apparent to me. And this is another lesson for anybody – somehow get some proper advice. I do feel that I need a one-to-one consultation with a doctor. Instead of talking to a group of people, first thing in the morning in a crowded ward.
I was absolutely very depressed, and I owe a lot to my friends and particularly my son for trying to cheer me up.
What did they do for you?
Well talked to me basically. Talked to me and came to see me. But the problem is with this, is that what I really needed was somebody to tell me what to do, what to say to this question, “Would you like a reconstruction or do you require an amputation, Mr Black? It’s your choice.” And I think I would certainly advise anybody else in that situation to insist that you go and see the doctor on their own, in an office, not surrounded by lots of other people, confidentially and just go through the options, which I didn’t do.
I think the reality is the doctors know better than you what they should do, particularly at a world class hospital like [hospital name]. But I think they had this, probably quite correctly, this culture – can I call it that? – Of offering you a choice. This word ‘choice’. I’m very cynical of the word ‘choice’, because you’re not informed enough to make a choice unless you are of extremely clear mind and not bursting with pain and all the rest of it. So I would have welcomed somebody just saying to me, “Look mate, you ain’t got no option, you’ve got to have an amputation”. And in the end it was a very good friend of mine, a woman, who said, quite forcefully, “Look Nick, the doctors are saying to you you’ve got to have an amputation, that’s what they’re saying between the lines. So just get on with it. And so that’s what I did, thanks to her advice.
Age at interview:
Simon is a health and fitness consultant. He is married with three children, aged 19, 21 and 27, and has one grandchild. His ethnic background is White English.
And do you feel that you’ve had enough information?
No I didn’t, I didn’t know that I might even be entitled to some help some State benefit help. I didn’t know I was entitled to DLA for instance, which would have been helpful in the early years. But it’s all relative, and when you think what I’ve been getting paid it’s probably much more than any other head injured people have ever had, so I’m not going to complain about it. I just donate it to the country.
But in those early years my GP could have told me that I’m entitled to DLA. My sister told me that I was entitled to the highest rate. When I was in the wheelchair, I should have been getting the highest rate for mobility and for, for care apparently which would have been… It would have meant about six or seven thousand pounds tax free benefit each year. For those years for about seven years, which I didn’t get, I didn’t even know about.
And have you since looked into that or … have you ever had DLA?
And how did you go about organising that?
I found out about it through Headway. They told me…I heard some, some people there talking about it.
Some other survivors of head injury?
Patients yeah. They told me that they had compensation, which meant that they were not entitled, you know, they got quite big compensation, they got lump sum compensation. And they told me that the DLA was not, it’s not a means tested. It was a disability testing really. It was basically on how, how your impairments, how your functioning impacts on your life. And that’s how it’s measured. So I applied for it and I get the, I get the lowest, the lower rate for one of the, for the mobility and I get the middle rate for the, for the care, for the brain injury.
Age at interview:
Nick is a retired chartered surveyor. He is divorced, lives alone and has two children, age 37 and 35. Ethnic background' White English.
You just said you joined the Limbless Association. What was your motivation behind that?
Information, I want to get information. I found the magazine that I happened to pick up very informative. There was mention of you. I think that was on the front cover. I’ve just have a package of stuff actually delivered from the Limbless Association, because I joined. I paid £200 to be a life member. I thought, “Accept it, Black. You’re limbless, mate. Just do it”. So rather than pay ten quid a year I did the life one.
And in this month’s edition were four very interesting things. There was you, there was an article about Blatchford’s, which is the limb fitting company that does the limb fitting, you know, it’s a contract deal with the NHS you know, but there was an article about Blatchford’s that I found really interesting. It’s a British Company, for once they are actually doing things that are made in Britain. It’s quite an informative magazine, much more so than the others, which are called things like Disabled and something else and they’re full of, they’re quite good, but, you know, buy a Volkswagen and get your wheelchair in the back – that sort of article.
Hearing other people’s experiences could be helpful. It was reassuring to hear about people who had made a good recovery. Others felt their experience was so individual there was little relevant information to draw on. Barrie was told by the neurologist that “there’s no hard and fast rules, it’s gonna be different for different people”. This was reflected in some people’s approach to information; they described how they just had to “get on with it” and learn what works for them. Christopher accepted there were no answers to the questions he really wanted answered.
At the time of publishing this website, this person was in the process of filing a compensation claim. We cannot display further information until the case has been resolved.
And I suppose it wouldn’t. Would you rather have had a pamphlet that told you everything, like a manual, a [husband’s name] manual. Or would you rather just have done what you did and just get to know him?
Myself, personally I’m glad I’ve done it the way that I have. Because I think if you have a manual there to say, right you’re supposed to do this and you’re supposed to do that. I think things wouldn’t be quite so natural and you would be thinking all the time, oh but the manual says this, so I mustn’t do this, I must do that. Yeah, it’s nice to have guidelines. And it’s nice to have little suggestions of what to do. But I think with brain injury that, I mean everybody is so individual, in regards as how bad the brain injury is, and then what the brain injury has left them with, whether it’s physical or anything like that. So I think that, basically, it’s just one big learning curve. Everybody, you know, everybody’s brain injury’s different. You can have two people who’ve got their brain injury exactly the same way – say, for instance they’ve both got it in a car crash, and they now have brain injury – but they can have completely different lives, live their lives totally different. Perhaps their carers are different in the way they do things. So, yeah, I think is very individual to your own case the way you live your life, the way you deal with it. And the way the carers deal with it yeah. It’s very individual.
Age at interview:
Christopher is married and has three children aged, 14, 24 and 25. At the time of his injury he was the director of consultant surveyors firm. He has since left this job and is setting up his own consultancy service. Ethnic background' White/Caucasian.
I don’t think that there is an understanding about what brain injury means for many people. I’m sure there isn’t. And you either can work or you can’t, can’t you? And it’s very black and white. In a way, it’s much easier to deal with people who are physically disabled than who’ve had brain injury and as an aside I can see this with my daughter. If you’ve only got one arm it’s quite clear that what you need to do is to modify things to accommodate that. But if you have brain injury, what does that actually mean? What have we got to do? People don’t understand. And because it’s different for everybody, you can’t necessarily say, well here’s a sheet of things that we have to do. I can quite see that’s why it was a difficulty for my previous employers. Even though I had been there for 33 years.
And at the time of your injury had you ever heard of brain injury? Did you know what it was?
I’d never heard of it before. I had no idea what it was or how it might affect you. And I don’t think, if anything, my immediate reaction if you talked about brain injury was about somebody who was a little bit stupid. My terrible shorthand. I think that was probably one of my greatest concerns about recovering from brain injury.
Sharing their own experiences was important to some people. Bill has a website (Mentor experiences – see ‘Resources’ section) in which he provides firsthand information for other people to share. Several people talked about finding support groups a good space to meet other people with injuries. Adrian described being “overjoyed to help out in any way I can”.
Amy is married to DJ (Interview 40). They have two grown up children, aged 35 and 40. She is a researcher, conducts brain rehabilitation and is a Christian missionary. Ethnic background' White American.
And another thing is people read a lot and watch on telly or their friends tell them of all these research miracles that are out there you know and you see them on the paper – Alzheimer's cure, brain injury people, paralysed man walks – and people don’t know enough about research and they can it's not that hard. And so one of my projects right now with , with Dr [name], is to, we're working on a project that we call 'Think Well,' so we're putting in the public at the heart of research so we can share with them, without math but with principles and with teaching tools, how to take apart research for themselves and so that they can become informed health consumers because I think that anyone with an injury or with a neurodegenerative disease that a huge part of recovery is becoming an advocate for your own care and also it helps if a person is unable to be their advocate. Another important thing is to have family members or friends that can advocate for you. So we're putting that information out there and hoping to make a difference and you know that's something, I hadn't expected to go in that direction.
Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site. We are a small team but will try to reply as quickly as possible.
Please note that we are unable to accept article submissions or offer medical advice. If you are affected by any of the issues covered on this website and need to talk to someone in confidence, please contact The Samaritans or your Doctor.