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.

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.

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.

Okay.

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.

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 oka.

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.

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 beenIt 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?

Yes.

And how did you go about organising that?

I found out about it through Headway. They told me 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.