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?

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.

Right so in terms of the whole process of finding what benefits you are eligible to receive and applying for them, was there anything with that was difficult for you to do?

I think over, with this DLA, I didn’t actually apply for DLA, but you tend to over, I don’t know, I think overcompensate, is probably not the word, is it? You tend to like over-emphasise what you think you can do, you think you know
Okay.

You know, what I mean. I can do this. I can do that you know, you’re over-stressing the things you think you can do rather than the reality of what you can and cannot do. So you sort of you’re not answering the questions that they want, they want to actually how they want to be answered basically. Does that make sense?

You think because you want to focus on what you can do, but they want you to focus on the negatives?

You’re overly positive. It more focuses on the positives.

Yeah.

Whether they’re true or not. You’re more focused on the positive.

Ok. And do you think it should have been you that was responsible for getting those things and answering those questions?

Not really. I think a lot of the stuff come from the psychologist on the [specialist team working in physical and neuro disability], because she said, you tend to like – not me – but the general thing is that you are trying to sort, I can do this, I can do that blah, blah, blah. She said, In a way you’re better to get advocates to do it for you I thin, you know.

Okay.

To actually tell you how to apply for it. You’re actually I think, they want you, they want you to apply in a certain way. But you tend to apply in the way you think’s okay which might well be completely wrong. Do you know what I mean?

Yes. And they of course want to know what your problems are?

That’s it yes.

Are they interested in knowing what you can do in a way? Is it all sort of negative focused?

Well the Incapacity Benefit was fine. Because basically you’ve got, I’ve read enough medical record saying, you’re not doing this just for a scam. it’s actually true. I’ve got loads of GP’s sick notes, blah, blah for whatever is for. You’ve got depression, you’ve got brain injury, blah, blah, blah, blah. That was all fine. The one that was difficult was DLA because that is just structured more for say someone like my Mum who was nearly 90 and what actually mobility was, what this was, and no sort of recognition at all of injury you might have from a brain injury or anything like that. None at all. So you couldn’t really relate to it. It just a seemed to be a bit of an alien thing to me.

Is it maybe more focused on physical disability?

It is. That’s what it seemed to me. To me it seemed to be more physical. It seemed to me more based on like what a carer would know about what the person would need, rather than
The person.

The person itself would know.

No, the case, it went on for four years. It was basically settled out of Court, because the other side didn’t have a case. It was the Royal Court of Justice, so it would have been like ait was a high money thing you know, basically lost income, lost, care, money, you know, future money, blah, blah, blah. And it was settled out of Court after four years. But it takes forever; it goes on and on and on and on, you know, that’s the thing. And it was a stress because, you don’t actually know when it was going to last, and if it would last if and it didn’t have any structure to it. Whether it would be successful. Whether it would be only like interim payments. How it would work at all really. And they didn’t really know. You know, they have to have like crime scenery reconstruction, they had like witness statements, they had medical reports, blah, blah, blah, and psychological reports. I did loads and loads of psychological stuff. Loads of it. And that went on as I said for four years. And then it was settled out of Court and that was finished, and then after that, I was put in Court of Protection, which was a nightmare.

And they put you in a situation where they’re saying after brain injury you won’t be able to do this, won’t be able to do that.

Yeah.

And theoretically you should have a financial assessment assessing your capabilities. But I didn’t have any of that. It was basically based on well you can’t do this, can’t do that. So I had a deputy put in place, who actually looks after your…You know what a deputy is…? I’ve lost you.

No sorry I didn’t hear what you said.

A deputy.

A deputy put in place.

What it is basically someone is supposed to be handling your affairs for you. So, in other words if you actually want something done you ask them. And they ask the investment company or my mortgage company or whatever and it gets done that way.

A deputy is basically someone…for example, it was a large settlement I got basically. And the money’s invested in a company, and for me to get money from that company, I have to go through the deputy and then ask them, who then charge me for the privilege of me asking him to ask them. It was mental. And I was in this about a year and then I got myself out of it, because I got a medical record saying I was more capable. I was perfectly capable of handling stuff. You know what I mean?

Right.

So I was signed off by the Court. So it’s gone. Because it was costing me, well it cost me £7,000.

For what?

The deputy. It was a nightmare. Because it was things like, I was basically asking them to ask the other people, and then they were charging me. You email them, then they were charging you for reading the email; you phone them and they charge you for their answering the phone; you text them and theyanything like that. It was a nightmare. This was going to be there for…I was given no structure for it. I was given no restrictions for it. I was given nothing. This bloke, the deputy could have been there for life. And it would cost you, what £70,000, £100,000, who knows?