Meet the Carers BBC Scotland Investigates


Meet the Carers

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'There are well over half a million of them in Scotland.'

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Companion, nurse, advocate, cook, cleaner, driver.

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'They are multi-skilled.'

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Must have patience, stamina, determination, a sense of humour.

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'They save the Scottish economy millions every year.'

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Hours - 24/7.

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Pay - 33p an hour?!

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That can't be right.

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'They are Scotland's hidden workforce.'

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Take any street in Scotland,

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any row of houses, who knows what's going on inside?

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But we do know that behind one front door in every eight,

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someone is acting as a carer for a person they love.

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Nobody plans to be a carer, yet more and more of us are doing it,

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and some carers tell us they feel invisible.

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I'm going behind closed doors

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to uncover the truth about life for carers.

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The Arthur family live behind this door

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in Inverkip on the Firth of Clyde.

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OK, so this is the way to Tricia, Tommy and Thomas' house.

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I'm going to spend a bit of time with them

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to find out what caring is all about.

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And I mean every change, every feed,

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all the medical stuff, the emotions,

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the stamina that's required, 24/7.

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At least, that's the plan.

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Hello, Tommy, lovely to see you.

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Great. Thanks very much indeed for having us along.

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That's Fiona in to see you, you think it's very funny?

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You think it's funny, do you?

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-Oh, good.

-Are we going to get you ready?

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'Thomas has severe cerebral palsy, epilepsy,

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'and he's registered blind.'

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We were told, basically, he wouldn't recognise us,

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he wouldn't recognise anything, be able to do anything, but he does.

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I mean, he recognises...

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-He knows every one of his family, as well.

-He knows everyone.

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Oh, he's a handsome guy!

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Oh, he's a handsome guy!

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THEY LAUGH

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-You're very handsome.

-You're very show-off!

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'Straight away, I'm struck by how happy Thomas is.

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'He's also very fragile.

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'He has osteoporosis, so his bones break easily.'

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When he broke his femurs, he had plasters on up to his thighs.

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And what the doctor done, he put it on in a seating position

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because he's never going to walk anyway.

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So this is one of the reasons his legs are constantly bent.

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So this is why we stretch them,

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just to get the muscles stretched a wee bit

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so he doesn't go into cramps.

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And how delicate do you have to be with his legs?

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Put your hands there, Fiona, just put them there in the back there.

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OK. A bit nervous about this.

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Just pull... We're going to do big stretches, Thomas, big stretches.

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Once I can feel a bit of resistance?

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If you feel resistance, that's as far as you can go, basically.

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Gosh, oh...

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'Tricia is Thomas' official full-time carer.

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'She gets a carer's allowance of £55 a week.

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'She tries to maintain a regular routine for Thomas.

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'He attends a special school during term time.'

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She flings me out that door, Fiona. And I'm not well, you know!

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And she says, "Get tae school. You'll be fine."

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'I look after Thomas to the best of my ability and I think...

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'even coming from me, I think I do a good job.

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'But there's days where I'm quiet

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'and I've very little to say to him'

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because I've ran out of petrol.

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Because there's only so long you can talk and answer yourself for.

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There we go, Mr Thomas.

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-There you are.

-Swapsy for changey.

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Right, over to Dad.

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# Roll over, roll over. #

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'Trisha and Tommy change Thomas.

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'Despite using baby wipes,

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'I have to keep in mind that Thomas is 16.

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'This is not how most parents would imagine life with their teenager,

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'and it's not how the Arthurs imagined it either.'

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Daddy see his boy in the morning? There.

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I'll see you in the morning. Night-night, a'body.

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Night-night, Thomas. See you in morning.

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Night-night, a'body.

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Well, that's 9 o'clock.

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Trisha and Tommy will get maybe an hour or so to themselves,

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try and catch as much sleep as they can,

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and then, first thing in the morning, about 6.20am,

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Trisha will be up, and start the routine all over again.

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Behind another ordinary door - in Glasgow, this time -

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another mother is her son's carer.

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Some disabilities are less visible than others.

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That's Kasim.

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Absolutely gorgeous!

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I miss that time,

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I wish that time could come back.

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I'd love to go back to the '90s.

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-Do you?

-Why?

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Yeah. To make my life better again. And start again.

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I'd love to go back. I miss the '90s.

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I found life better then because I was younger

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and I didn't feel as much.

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But you were such a handsome little young man.

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So when these photos were taken,

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did you know that Kasim had Asperger's?

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No, because he hadn't started nursery yet. No.

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But he was a very naughty child. Very naughty.

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Because there's pictures in here when he's just...

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playing around with the flour that I used to cook with.

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Oh, I remember that!

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It all came out in the kitchen.

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Yes, and he was covered with the white flour.

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And you told me off.

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Went in the kitchen, head to toe, he was covered in this white flour.

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But no, I don't think anybody realised

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your life was going to turn out like this.

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The pressures on carers can take many forms.

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I want to go into Wagamama.

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-You can't go into Wagamama.

-But I want to go in there.

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But you can't, because remember, you're barred in there.

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'Asperger's is a form of autism.

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'It means Kasim finds it hard to read social situations

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'so his behaviour can get him into trouble.'

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I'm just going to go in and say, "Table for one."

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You can't do that, Kasim, Just leave it, leave it.

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'It makes me feel things are very difficult, at times, to understand.'

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I find It very difficult to socialise,

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to find a job and things like that.

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'For Rucksana, every outing can be fraught.'

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No. Come here a minute.

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You're barred from there, stop it. Do want to cause trouble?

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My life is completely revolved around Kasim.

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What he wants to do,

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what he doesn't want to do...

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Everything's just about him, from the minute I get up,

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from the time I go back to sleep, it's about him.

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'It's almost like a child that needs their mum all the time.'

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He can't see a life without me.

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He doesn't know how to function without me.

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'Kasim has no friends.

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'In fact, he spends virtually all his time with his mum,

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'which in turn, puts a lot of pressure on her.

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'In fact, it was Rucksana's GP

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'who suggested she take a part-time job,

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'to give her a break.

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'So she works three half days a week in a shop.

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'But it's difficult for Kasim to understand

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'that she needs that time to herself.'

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'He comes and sits outside my work,

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'and as soon as I've come out, like,

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'"What are we going to do now? Where are we going to go now?

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'"Where will you take me? I'm bored, I want to go for a drive."'

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'And every day it's the same.'

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I told you not to come, Kasim.

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Why? I didn't know what to do.

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'Do you think you rely on her'

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quite a lot?

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Yeah, maybe. Because I've got no-one else to turn to.

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'He doesn't intentionally'

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make my life the way it is.

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It's because he's so suffering himself.

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Do you understand? He's suffering.

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So how would you like things to be different.

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I would like to have a job,

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I would like people to understand me, I would like to have friends.

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'Kasim's need to make friends

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'just shows how totally isolated he is.'

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And because he's so socially isolated,

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he's always with his mum,

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and that means that she is totally cut off

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from friends and the wider family.

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'Back at Tricia and Tommy's, it's an early start.

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'Their morning routine is a bit more complicated than most.'

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Lazybones!

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'Work begins well before breakfast.'

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Lazybones!

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"Oh, no, Mum, no."

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"Don't make me get up. Please!"

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'It's quite a physical hour in the morning.'

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I have to step out of being mum and into...

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keep-your-lungs-clear mode.

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Clearing Thomas' lungs is one of the many medical tasks

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Trisha has to take responsibility for.

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'Don't think I'm hard, I'm not hard.

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'It's just I have a job to do in the morning.

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'My job is to keep his lungs clear.

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'For however distressing it is - and it is to me as well -

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'it's something that I've lived with for such a long time.'

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'There can be only one registered carer for Thomas,

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'but it takes two to look after him.'

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We'll go very fast. Don't worry. Don't worry.

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Can you see anything, no?

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Right, a wee scoosh.

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'Thomas is getting bigger and bigger

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'and I'm terrified.

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'I am absolutely terrified on my own.

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'Last July I broke the top of his femur and his knee.

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'I took my eye off the ball for a split second,

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'that was all it took, and I knew I'd done it.

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'I knew right away I'd done it.

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'So the fear is there.'

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Down we go!

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On the days Thomas goes to school,

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agency carers come in to help him get up and ready.

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But there's no home care service later in the day,

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or at weekends, or during the school holidays.

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Doing this four times a day takes a lot out of two of you,

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let alone just one.

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As I say, Trisha's...

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..not as young as she used to be either,

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and Thomas is getting heavy.

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-Cheers, mate.

-He's a big boy.

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'Tricia says she's been pleading with Inverclyde Council

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'to pay for agency carers to come in more often

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'to help her change Thomas.

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'She says it makes economic sense to fund some extra help

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'so she can continue to care for Thomas at home.'

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They'll say £34,000 a year

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will put four services in here a day.

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But its £213,000 a year if Thomas goes into care,

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so where's the logic?

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And do you have to wait until you're absolutely dropping off your feet?

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Come on, son.

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'It's taken hours to get out the door,

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'just to nip up to the local garden centre.'

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'We can't go on long journeys now. Things are becoming more difficult.

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'His pads are maybe only comfortable I would say

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'for a maximum of five hours.'

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There's no hoists anywhere,

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so there is no possible way Thomas could be changed.

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He's a young adult now, he's not a wee boy anymore.

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Things are becoming more difficult.

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'It's just really to get out and about. It helps us as well.

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'Sitting in the house 24 hours a day, it's a nightmare.'

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'If you know he's been out as well, you feel better.'

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Is that your wind chimes, Thomas, is it?

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Is that your wind chimes? Will we go and see the fish?

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Come on, we'll go and see the fish.

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As a teenager now...

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he's sitting in a chair when he should be out,

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you know, enjoying life.

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Do you see other kids his age?

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Yeah.

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In fact, he's got a wee pal, Jonathan,

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who was born at the same time as him.

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I see him out and about now

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and I say to myself, "Och, that could have been Thomas."

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It's quite hard, it is.

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As I say, he's happy.

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He's a happy wee boy, as you've seen.

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Tricia say she's been battling

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to persuade Inverclyde Council to fund more care support.

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So far, she says she's been getting nowhere.

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'I happen to be there

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'when Trisha gets an unexpected call from the council.'

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Hello.

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Oh, right, and that's going to be on what date, did you say?

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Oh, so I've got two appointments?

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-Are you trying to impress the BBC?

-SHE LAUGHS

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Oh, you would have been coming to see me?

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Right. Right.

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Right, thank you, bye!

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-That sounded interesting

-Oh, I'm in heaven!

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SHE LAUGHS

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Do you know, that woman has never phoned me?

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She has never. She has returned a call if I've phoned her.

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She has never phoned me.

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I've had about...

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'It looks as though the tide may be turning for Trisha.'

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Yes, yes! They're listening! They're listening!

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I've got a review with everyone.

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From his physiotherapist,

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to the school nurse, to Countryview,

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to me, to the physiotherapist,

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the occupational therapist.

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They've all been invited to give their input into this meeting

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to see what care package Thomas needs.

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I've only been trying for two years.

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Two years to get someone to listen!

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Whoo-hoo!

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I'm so pleased!

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'It's a breakthrough.

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'In three weeks' time, Trisha will have her big meeting at the council.

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'It really could change her life.'

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But back at the Mahmoods',

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Rucksana doesn't feel like there's any hope of progress.

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A little while back,

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I used to think, "Oh when he grows up,

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"I'll have time to myself."

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I just kept on telling myself this, to carry on.

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It's going to get better, it will get better, he'll find a job,

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he'll find friends, somebody out there will be able to help us.

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But now, I've, erm...nothing.

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I know nobody's out there that's going to help us.

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I know nothing's going to happen.

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And I know this is the way it's always going to be.

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Where are you, Kasim?

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'Where are you?'

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No I need to know where you are first.

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'You tell me where you are.'

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Kasim, could you please tell me where you are?

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'It's not long before I get a glimpse

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'of how unpredictable life can be.'

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-What do you mean?

-I mean what are you doing?

-I've just been so upset.

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-Do you know how worried I've been?

-Are you OK?

-Yeah, I'm OK.

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Honestly, you have to stop doing this, Kasim.

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-I was been so worried.

-OK.

-Come on out.

-OK. Right.

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I need to put the other washing there, Stop that!

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I need to put the washing there.

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Just leave it there just now, that's why it's smelling.

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Because you haven't rinsed it?

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Just leave it there.

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I want a friend so he should just look at it that way.

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Just stop there.

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I can't, because that woman... Kasim! Kasim! There's a car behind me!

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Sorry, sorry.

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'Do you feel that you can carry on as things are?'

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'No.'

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I'm struggling.

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I'm struggling. It's almost like, erm...

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Do you know, there's a very fine line

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to when you're sane and when you're insane.

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I'm struggling to keep on this side of it.

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My fear is, what is going to become of him when I'm not here?

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Because I advocate on his behalf,

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I try so hard, I fight this department,

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I speak to this department, and I can't get through.

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Nobody wants to listen,

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and what chance does this young man have to be heard?

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It's a long-awaited day for the Arthur family.

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Thomas is going off to his respite centre for 4 nights,

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which means Tricia and Tommy

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should be able to have a break.

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Bye!

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'You always know when respite's due.

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'Your body tells you.

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'And it was quite a long period,

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'you know, to be working 24/7. It's hard.

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'He'll come back from respite on Friday,

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'all going well.'

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It will recharge my batteries. It will.

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It'll be good.

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I love respite. I never used to, and I used to feel guilty for saying it,

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but I'm only human.

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Today is also the day of Tricia's meeting at Inverclyde Council

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to review Thomas' care needs.

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All of his key workers from social work, education and the NHS

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will be there.

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She's taken her sister, Roseanne,

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along to the meeting for moral support.

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There's a lot riding on this,

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because what happens in the next hour

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could transform their lives.

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It looked good.

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I sort of got over my point and they've decided...

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Everyone who was there,

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all Thomas' key workers who were all there,

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are all in agreement that Thomas does need a lot of care.

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So hopefully, hopefully, it's going to come out well.

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Thomas stays at Countryview for three or four nights most months.

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It's a respite home run by Quarriers.

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'He's been coming here for years and the staff know him well.'

0:20:540:20:58

Yes! Oh, my goodness!

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'If Thomas goes to respite now,

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'Tricia and I actually sit and look at each other and say,'

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"Right, what are we going to do?"

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'because we've lost the ability to go out and socialise.'

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Respite gives Tricia and Tommy a much-needed break most months.

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But it's not enough to allow Tommy to get back to work.

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He's needed at home to help with Thomas' care on a daily basis.

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How's that?

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Last year, I got really depressed because I couldn't go out and work,

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couldn't bring in a wage, couldn't provide.

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I feel like a failure now,

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because I've not been able to provide what I should be able to provide.

0:21:480:21:52

So, that's... It's quite hard.

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There's no rest for Rucksana.

0:22:120:22:13

She's says she's still struggling to get support for her son, Kasim.

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But she doesn't think he's being offered the right kind of help

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from Glasgow City Council.

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The only service that we've been really offered

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is from the social work department, for Kasim to take on a befriender.

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But Kasim feels he doesn't want anybody

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paid to come and be his friend.

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He wants to make friends himself.

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They just keep on offering us things that we don't need.

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I mean, they're offering us a home help

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and when we refuse that, they just turn round and say,

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"Well we're offering you things, you're not accepting them,

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"so, really, we've got nothing else to do for you."

0:22:490:22:53

-So have they struck him off?

-Yes, they have.

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I've received a letter recently

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saying that they've taken him off the social work department register.

0:23:000:23:05

In fact, it's education services Kasim wants.

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The right school was never found for him.

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He went to more than a dozen.

0:23:100:23:12

What he wants now is a tutor

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and support to go to college.

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His mum believes this would give his life direction

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and take the pressure off her.

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If he moves on, only then will I be able to move on in my own life.

0:23:220:23:27

Just now, it seems as if it's stuck in a circle,

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you just run round and round and there's just no way out.

0:23:300:23:33

What kind of person were you before?

0:23:350:23:37

I was a very bubby person, a very outgoing person.

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I love to entertain, I love cooking.

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I used to make lots of dishes and invite friends over.

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I loved walking. I love reading.

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There's lots of things,

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but I can't do any of those now.

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I've come to catch up with the Arthur family.

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I had planned to pop in and see them at their house,

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but as it turns out,

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they're spending all their time this week at the hospital.

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'Thomas is hospitalised a lot.

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'Normally it's because of his fragile bones.

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'This time, it's not clear what's wrong

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'and, of course, he can't say where it hurts.'

0:24:320:24:34

-Hello, hi!

-Hi, how are you?

0:24:340:24:38

-I'm fine. How are you guys?

-We're fine.

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How is he?

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He's been in quite a lot of pain for over the last week,

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but he is coming on now, he's getting a lot better.

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We saw you when you were just out of a big council meeting,

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looking at your future care for Thomas.

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You were due to get a decision today.

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Have you got any update?

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No, nothing's moved.

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There's a new sort of system coming out just now

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and I was supposed to have a meeting on Monday about it,

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but we've had to delay it

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because Thomas is in hospital. And...

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respite, they don't review again till May,

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so I haven't heard anything about that.

0:25:200:25:23

And I just feel as if we're starting to slow down again.

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How would you describe

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the way you've had to... struggle, really?

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Horrendous.

0:25:310:25:33

You don't know who to go to.

0:25:330:25:35

I mean, you're phoning one person

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and they're passing you on to somebody else.

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It's just a vicious circle. And you end up back at the same person again.

0:25:400:25:43

Inverclyde Council say:

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I've also had an update on Kasim's case.

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Glasgow City Council have said

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that they've offered him a range of services over the years

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which he has declined.

0:26:180:26:20

But I can see from letters that he's been sent

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that they simply closed his case after that.

0:26:230:26:26

However, since we started filming,

0:26:260:26:29

they have re-opened his case, they've written to him,

0:26:290:26:33

and offered to reconsider his original requests

0:26:330:26:37

for funding to help with his education.

0:26:370:26:39

And the council have been on the phone to me

0:26:390:26:42

just to let me know that Kasim and his mum

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should be able to expect good news on that front soon.

0:26:450:26:49

A couple of years ago, the Scottish Government published this Carer's Strategy, with input from carers

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and the organisations which represent them.

0:26:560:26:58

It says enough support should be provided

0:26:580:27:02

to prevent them ending up at crisis point.

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But to the carers we've spoken to,

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it can read more like a work of fiction.

0:27:080:27:10

I recognise that many carers don't receive

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the level of support and assistance that they require.

0:27:120:27:15

And this is a strategy

0:27:150:27:17

that's going to be implemented over a number of years

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and we have put in place a number of measures

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that will support and assist carers in a number of different ways.

0:27:220:27:26

There is certainly more for us to do in this area

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and as a government,

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we're very committed to making sure that that happens.

0:27:290:27:32

That sounds great, but you are two years into a five year strategy.

0:27:320:27:36

For some people, it may be that we are not making progress

0:27:360:27:39

as quickly as they would like us to make.

0:27:390:27:41

But there should be no doubt there is a clear determination

0:27:410:27:44

from our part, in Government, to make sure that the strategy

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is taken forward as effectively as possible.

0:27:470:27:50

Carers aren't saints, or some kind of super-human class of people -

0:27:510:27:56

they're people like you and me

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who've found themselves looking after someone they love.

0:27:580:28:01

And if you're not already a carer,

0:28:010:28:03

the chances are you'll find yourself caring at some point in your lives.

0:28:030:28:08

It's a huge part of the way we look after people in need.

0:28:080:28:13

So maybe it's time that supporting carers properly

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is as normal as caring itself.

0:28:170:28:21

What's wrong? What happened?

0:28:210:28:25

'There is a life. There's a life beyond caring.'

0:28:250:28:28

'It's your right, as a person,'

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to have as near as normal a life

0:28:320:28:34

as the person who lives next door to you.

0:28:340:28:36

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