News

BBC Breakfast interview with Gary Dawson (support network manager)

Watch back Gary’s interview with Naga and Charlie about the highs and lows of rehab (and life) with spinal cord injury, and how SIA is there to help people when they need it most.

(Note: the BBC retain copyright to the above clip)

Transcript 

We are joined now by Gary Dawson who’s from the Spinal Injuries Association. Good morning.

Good morning thanks for having me.

So they were celebrating in Salisbury their 40th anniversary you’re celebrating because I’ve just noticed your badge.

Yes the Spinal Injuries Association celebrates its 50th Anniversary this year, so 50 years of supporting people affected by spinal card injury.

How has and I don’t necessarily mean in terms of medical treatment I’m talking about attitudes to rehabilitation how has that changed over 50 years because I just do wonder if once upon a time once she had a spinal injury you’re out of society.

Yeah things have changed a lot over the years even the the 21 years since I broke my back. Back when I was injured the the predominant people who would access specialist rehabilitation all had traumatic injuries and the the good thing is that almost anybody who sustains some form of spinal cord injury whether it’s through a traumatic means or an illness or disease has the right now to be referred to a specialist rehabilitation centre. Now not everybody is going to go, there’s only around about 400 beds in the UK and there’s 4,400 people per year who will sustain a spinal cord injury but it does mean that those who are able to access specialist rehabilitation have an opportunity for a much greater outcome.

In terms of like rehabilitation you were 19, do you mind saying what happened?

No well just down the road from where we sat right now in Stretford I was riding my motorbike I was slowing down to a set of traffic lights and in a freak accident the back wheel locked up, I fell off the bike continued down the road hit the back of a car and my own beloved bike followed me down the road and crushed me into the car. Right okay so that’s pretty traumatic and I just wonder when does the physical rehabilitation begin because I suppose there was that moment when you are told. I’m a T6 so I’m I’m completely paralysed from the chest down. So I mean you are dealing with that being told that and then it’s like well you’re only 19 yeah got life ahead of you. Well that’s it I went from from knowing everything about the world as a young sort of arrogant 19 year old thinking that he believes his position in the world is final and he knows everything to a world of disability and and medical jargon that I didn’t understand and you I was laying a bed staring at a ceiling being told that have a spinal cord injury. I didn’t know what that meant and I’m just laying in bed staring at ceiling thinking well my legs aren’t working I’ve lost control of my bodily functions, the relationship I’m in is clearly going to end, I’m now going to become a patient to my family who are going to have to care for me for the rest of my life. There was no immediate knowledge or information especially back in 2003 there’s no Tik Tok or YouTube for me to turn to or more importantly there was no Spinal Injuries Association support network coordinator who was going to come along and give me that information so processing all this this hardship was horrendous but being a 19-year-old in the early 2000s I also wanted to support my family through it so I remained confident I was smiling I was going to be fine I was going to be an athlete I was going to I was going to walk again all these different things that I was I was so focused on but the reality was that I was facing a lifelong disability that was so complex my focus was I was going to be a wheelchair user and reality that scared me more than anything was I was going to be double incontinent I’d had sexual dysfunction I’d lost all sensation from the chest down I will need mobility equipment and is society ready for that am I ready for that it was a big thing to deal with.

I tell you what Gary I hope it comes across to people watching you you have got amazing energy you you have a kind of aura around you of energy and can do, you must get enormous satisfaction from affecting people who were as you were when you were 19 when it happened, you must see the change of how you can help how things can be changed.

Absolutely I mean the reality of it when I was when I was injured the services available were just not there so as much as I had to come to terms with my injury I then went on to Southport spinal injuries unit which was the most incredible experience. The specialist rehabilitation for me was incredible just being able to access the equipment the specialisms from the therapists and the nurses and the doctors and the consultants. I was only there for seven weeks because they taught this amazing foundation of skills to then go and live my life and what I wasn’t ready for was the real world is not especially spinal injures unit it’s not an accessible place so when I went home to an inaccessible house not being able to know rely on adaptations because it’s it’s a very long wait to have your house adapted had to wait for my own council property at the time and the reality was that I was terrified and depression sunk in quite quickly so my coping mechanisms were very negative very much self-harming I took several overdoses I used substances to cope with things and nobody knew, none of my friends or family knew they actually only found out about three years ago when it was published in an article in my local paper and I got a very teary phone call from my mum and the panic was that why didn’t you talk to us why don’t you tell us and it was because they couldn’t help no one could understand no one could no psychologist at the time or counsellor could have made a difference because I needed someone like me someone who had that experience to sit there and go actually I’ve drove here, I go on holiday, I ski, I cycle, I’m in a relationship, I play sports I’m back to being the person I am albeit as a wheelchair user.

Is there access is there enough access available for people who have spinal cord injuries or families who are trying to figure out how their babies or you young children are going to live in this world with the spinal cord injury.

The reality is no, it say a massively oversubscribed service. When someone sustains a spinal card injury it can happen in any way. I’ve had gentleman a 90-year old gentleman who was putting his socks on fell a bit too far forward hit his head wall broke his neck and spent three days lay on the floor and we also have people who have underlying conditions that can just in the blink of an hour your life changes when this happens you are then admitted into your local District General Hospital who are not specialist you if you’re lucky you get over to the major Trauma Centres where you will access incredible immediate care but then you at the whim of the waiting list to a spinal injury centre or local neuro rehab units that cover a wide variety of disabilities as opposed to specialising in one so they may not focus on bowels or bladder. Then unfortunately there’s many people who will then just get discharged home may even go to any rehabilitation at all they may get referred to community therapy. This is where the third sector becomes crucial being able to access a someone who can offer peer support has been talked about this morning already.

The value of peer support is, you can’t put value on it to be honest with you because it’s being able to relate and connect to someone who can give you an insight into what is possible but that also extends to friends and families and employees or the school of somebody who’s young and has now access you know, having to go back to education but we can go in and talk to their fellow students explain why they use a separate toilet for access or they’re no longer be sitting in the class because the school’s not fully accessible but then it is accessing those charities like the Spinal Injuries Association’s services, they offer that lifelong support so even if you’ve not ready in those first couple of years it us takes between two and five years to get your head around the spinal cord injury when you are ready and when your circumstances continuously change you can access certain services.

You make a really important point about peer services actually because we were talking to Dale McKenzie a little earlier and he was talking about veteran support and you make the point if you if you don’t think someone doesn’t understand what you’re going through it’s very hard to be almost honest about your fears and you know and possibilities and believe it as well.

You make a, you’re great guest to have I’ll be back anytime oh well you are welcome whenever. Thank you so much Gary Dawson from the Spinal Injuries Association thank you.

No thank you for having me it’s pleasure to meet you both.