0:00:03 > 0:00:06'There are well over half a million of them in Scotland.'
0:00:08 > 0:00:12Companion, nurse, advocate, cook, cleaner, driver.
0:00:14 > 0:00:16'They are multi-skilled.'
0:00:16 > 0:00:21Must have patience, stamina, determination, a sense of humour.
0:00:21 > 0:00:25'They save the Scottish economy millions every year.'
0:00:25 > 0:00:29Hours - 24/7.
0:00:29 > 0:00:32Pay - 33p an hour?!
0:00:32 > 0:00:35That can't be right.
0:00:35 > 0:00:37'They are Scotland's hidden workforce.'
0:00:57 > 0:00:58Take any street in Scotland,
0:00:58 > 0:01:03any row of houses, who knows what's going on inside?
0:01:03 > 0:01:06But we do know that behind one front door in every eight,
0:01:06 > 0:01:09someone is acting as a carer for a person they love.
0:01:10 > 0:01:14Nobody plans to be a carer, yet more and more of us are doing it,
0:01:14 > 0:01:18and some carers tell us they feel invisible.
0:01:18 > 0:01:21I'm going behind closed doors
0:01:21 > 0:01:25to uncover the truth about life for carers.
0:01:25 > 0:01:28The Arthur family live behind this door
0:01:28 > 0:01:31in Inverkip on the Firth of Clyde.
0:01:33 > 0:01:37OK, so this is the way to Tricia, Tommy and Thomas' house.
0:01:37 > 0:01:39I'm going to spend a bit of time with them
0:01:39 > 0:01:41to find out what caring is all about.
0:01:41 > 0:01:44And I mean every change, every feed,
0:01:44 > 0:01:48all the medical stuff, the emotions,
0:01:48 > 0:01:51the stamina that's required, 24/7.
0:01:51 > 0:01:53At least, that's the plan.
0:02:02 > 0:02:04Hello, Tommy, lovely to see you.
0:02:04 > 0:02:07Great. Thanks very much indeed for having us along.
0:02:09 > 0:02:12That's Fiona in to see you, you think it's very funny?
0:02:12 > 0:02:15You think it's funny, do you?
0:02:15 > 0:02:17- Oh, good. - Are we going to get you ready?
0:02:19 > 0:02:22'Thomas has severe cerebral palsy, epilepsy,
0:02:22 > 0:02:24'and he's registered blind.'
0:02:24 > 0:02:27We were told, basically, he wouldn't recognise us,
0:02:27 > 0:02:31he wouldn't recognise anything, be able to do anything, but he does.
0:02:31 > 0:02:33I mean, he recognises...
0:02:33 > 0:02:37- He knows every one of his family, as well.- He knows everyone.
0:02:37 > 0:02:41Oh, he's a handsome guy!
0:02:41 > 0:02:45Oh, he's a handsome guy!
0:02:45 > 0:02:47THEY LAUGH
0:02:47 > 0:02:51- You're very handsome. - You're very show-off!
0:02:52 > 0:02:55'Straight away, I'm struck by how happy Thomas is.
0:02:55 > 0:02:57'He's also very fragile.
0:02:57 > 0:03:01'He has osteoporosis, so his bones break easily.'
0:03:01 > 0:03:05When he broke his femurs, he had plasters on up to his thighs.
0:03:05 > 0:03:09And what the doctor done, he put it on in a seating position
0:03:09 > 0:03:11because he's never going to walk anyway.
0:03:11 > 0:03:14So this is one of the reasons his legs are constantly bent.
0:03:14 > 0:03:16So this is why we stretch them,
0:03:16 > 0:03:18just to get the muscles stretched a wee bit
0:03:18 > 0:03:20so he doesn't go into cramps.
0:03:20 > 0:03:25And how delicate do you have to be with his legs?
0:03:25 > 0:03:30Put your hands there, Fiona, just put them there in the back there.
0:03:30 > 0:03:31OK. A bit nervous about this.
0:03:31 > 0:03:36Just pull... We're going to do big stretches, Thomas, big stretches.
0:03:36 > 0:03:38Once I can feel a bit of resistance?
0:03:38 > 0:03:40If you feel resistance, that's as far as you can go, basically.
0:03:40 > 0:03:42Gosh, oh...
0:03:44 > 0:03:47'Tricia is Thomas' official full-time carer.
0:03:47 > 0:03:51'She gets a carer's allowance of £55 a week.
0:03:51 > 0:03:54'She tries to maintain a regular routine for Thomas.
0:03:54 > 0:03:58'He attends a special school during term time.'
0:03:58 > 0:04:01She flings me out that door, Fiona. And I'm not well, you know!
0:04:03 > 0:04:05And she says, "Get tae school. You'll be fine."
0:04:05 > 0:04:10'I look after Thomas to the best of my ability and I think...
0:04:10 > 0:04:13'even coming from me, I think I do a good job.
0:04:13 > 0:04:15'But there's days where I'm quiet
0:04:15 > 0:04:17'and I've very little to say to him'
0:04:17 > 0:04:19because I've ran out of petrol.
0:04:19 > 0:04:23Because there's only so long you can talk and answer yourself for.
0:04:23 > 0:04:27There we go, Mr Thomas.
0:04:27 > 0:04:30- There you are.- Swapsy for changey.
0:04:32 > 0:04:33Right, over to Dad.
0:04:33 > 0:04:37# Roll over, roll over. #
0:04:37 > 0:04:39'Trisha and Tommy change Thomas.
0:04:39 > 0:04:41'Despite using baby wipes,
0:04:41 > 0:04:45'I have to keep in mind that Thomas is 16.
0:04:45 > 0:04:49'This is not how most parents would imagine life with their teenager,
0:04:49 > 0:04:52'and it's not how the Arthurs imagined it either.'
0:04:52 > 0:04:55Daddy see his boy in the morning? There.
0:04:56 > 0:05:01I'll see you in the morning. Night-night, a'body.
0:05:01 > 0:05:04Night-night, Thomas. See you in morning.
0:05:04 > 0:05:05Night-night, a'body.
0:05:08 > 0:05:10Well, that's 9 o'clock.
0:05:10 > 0:05:15Trisha and Tommy will get maybe an hour or so to themselves,
0:05:15 > 0:05:18try and catch as much sleep as they can,
0:05:18 > 0:05:22and then, first thing in the morning, about 6.20am,
0:05:22 > 0:05:27Trisha will be up, and start the routine all over again.
0:05:44 > 0:05:47Behind another ordinary door - in Glasgow, this time -
0:05:47 > 0:05:49another mother is her son's carer.
0:05:51 > 0:05:53Some disabilities are less visible than others.
0:05:53 > 0:05:56That's Kasim.
0:05:57 > 0:06:00Absolutely gorgeous!
0:06:00 > 0:06:01I miss that time,
0:06:01 > 0:06:03I wish that time could come back.
0:06:03 > 0:06:05I'd love to go back to the '90s.
0:06:05 > 0:06:06- Do you?- Why?
0:06:06 > 0:06:10Yeah. To make my life better again. And start again.
0:06:10 > 0:06:14I'd love to go back. I miss the '90s.
0:06:16 > 0:06:18I found life better then because I was younger
0:06:18 > 0:06:20and I didn't feel as much.
0:06:21 > 0:06:24But you were such a handsome little young man.
0:06:25 > 0:06:27So when these photos were taken,
0:06:27 > 0:06:31did you know that Kasim had Asperger's?
0:06:31 > 0:06:35No, because he hadn't started nursery yet. No.
0:06:35 > 0:06:38But he was a very naughty child. Very naughty.
0:06:38 > 0:06:42Because there's pictures in here when he's just...
0:06:42 > 0:06:45playing around with the flour that I used to cook with.
0:06:45 > 0:06:46Oh, I remember that!
0:06:46 > 0:06:48It all came out in the kitchen.
0:06:48 > 0:06:51Yes, and he was covered with the white flour.
0:06:51 > 0:06:53And you told me off.
0:06:53 > 0:06:57Went in the kitchen, head to toe, he was covered in this white flour.
0:06:57 > 0:07:00But no, I don't think anybody realised
0:07:00 > 0:07:02your life was going to turn out like this.
0:07:06 > 0:07:09The pressures on carers can take many forms.
0:07:09 > 0:07:12I want to go into Wagamama.
0:07:12 > 0:07:14- You can't go into Wagamama. - But I want to go in there.
0:07:14 > 0:07:17But you can't, because remember, you're barred in there.
0:07:17 > 0:07:20'Asperger's is a form of autism.
0:07:20 > 0:07:23'It means Kasim finds it hard to read social situations
0:07:23 > 0:07:25'so his behaviour can get him into trouble.'
0:07:25 > 0:07:28I'm just going to go in and say, "Table for one."
0:07:28 > 0:07:31You can't do that, Kasim, Just leave it, leave it.
0:07:31 > 0:07:35'It makes me feel things are very difficult, at times, to understand.'
0:07:37 > 0:07:40I find It very difficult to socialise,
0:07:40 > 0:07:42to find a job and things like that.
0:07:42 > 0:07:45'For Rucksana, every outing can be fraught.'
0:07:45 > 0:07:47No. Come here a minute.
0:07:47 > 0:07:52You're barred from there, stop it. Do want to cause trouble?
0:07:52 > 0:07:56My life is completely revolved around Kasim.
0:07:56 > 0:07:58What he wants to do,
0:07:58 > 0:08:00what he doesn't want to do...
0:08:00 > 0:08:04Everything's just about him, from the minute I get up,
0:08:04 > 0:08:08from the time I go back to sleep, it's about him.
0:08:08 > 0:08:12'It's almost like a child that needs their mum all the time.'
0:08:12 > 0:08:14He can't see a life without me.
0:08:16 > 0:08:19He doesn't know how to function without me.
0:08:20 > 0:08:21'Kasim has no friends.
0:08:21 > 0:08:24'In fact, he spends virtually all his time with his mum,
0:08:24 > 0:08:28'which in turn, puts a lot of pressure on her.
0:08:28 > 0:08:30'In fact, it was Rucksana's GP
0:08:30 > 0:08:32'who suggested she take a part-time job,
0:08:32 > 0:08:34'to give her a break.
0:08:34 > 0:08:37'So she works three half days a week in a shop.
0:08:37 > 0:08:39'But it's difficult for Kasim to understand
0:08:39 > 0:08:41'that she needs that time to herself.'
0:08:41 > 0:08:45'He comes and sits outside my work,
0:08:45 > 0:08:49'and as soon as I've come out, like,
0:08:49 > 0:08:51'"What are we going to do now? Where are we going to go now?
0:08:51 > 0:08:54'"Where will you take me? I'm bored, I want to go for a drive."'
0:08:54 > 0:08:56'And every day it's the same.'
0:09:01 > 0:09:03I told you not to come, Kasim.
0:09:03 > 0:09:06Why? I didn't know what to do.
0:09:06 > 0:09:08'Do you think you rely on her'
0:09:08 > 0:09:10quite a lot?
0:09:10 > 0:09:14Yeah, maybe. Because I've got no-one else to turn to.
0:09:14 > 0:09:16'He doesn't intentionally'
0:09:16 > 0:09:18make my life the way it is.
0:09:19 > 0:09:24It's because he's so suffering himself.
0:09:26 > 0:09:28Do you understand? He's suffering.
0:09:28 > 0:09:32So how would you like things to be different.
0:09:32 > 0:09:33I would like to have a job,
0:09:33 > 0:09:36I would like people to understand me, I would like to have friends.
0:09:36 > 0:09:40'Kasim's need to make friends
0:09:40 > 0:09:43'just shows how totally isolated he is.'
0:09:43 > 0:09:47And because he's so socially isolated,
0:09:47 > 0:09:49he's always with his mum,
0:09:49 > 0:09:53and that means that she is totally cut off
0:09:53 > 0:09:55from friends and the wider family.
0:10:00 > 0:10:04'Back at Tricia and Tommy's, it's an early start.
0:10:04 > 0:10:07'Their morning routine is a bit more complicated than most.'
0:10:07 > 0:10:09Lazybones!
0:10:09 > 0:10:11'Work begins well before breakfast.'
0:10:11 > 0:10:13Lazybones!
0:10:16 > 0:10:19"Oh, no, Mum, no."
0:10:19 > 0:10:22"Don't make me get up. Please!"
0:10:22 > 0:10:26'It's quite a physical hour in the morning.'
0:10:26 > 0:10:28I have to step out of being mum and into...
0:10:28 > 0:10:31keep-your-lungs-clear mode.
0:10:32 > 0:10:35Clearing Thomas' lungs is one of the many medical tasks
0:10:35 > 0:10:39Trisha has to take responsibility for.
0:10:39 > 0:10:41'Don't think I'm hard, I'm not hard.
0:10:41 > 0:10:44'It's just I have a job to do in the morning.
0:10:44 > 0:10:46'My job is to keep his lungs clear.
0:10:46 > 0:10:49'For however distressing it is - and it is to me as well -
0:10:49 > 0:10:53'it's something that I've lived with for such a long time.'
0:10:53 > 0:10:56'There can be only one registered carer for Thomas,
0:10:56 > 0:10:59'but it takes two to look after him.'
0:10:59 > 0:11:02We'll go very fast. Don't worry. Don't worry.
0:11:04 > 0:11:06Can you see anything, no?
0:11:08 > 0:11:10Right, a wee scoosh.
0:11:10 > 0:11:13'Thomas is getting bigger and bigger
0:11:13 > 0:11:15'and I'm terrified.
0:11:15 > 0:11:19'I am absolutely terrified on my own.
0:11:19 > 0:11:23'Last July I broke the top of his femur and his knee.
0:11:23 > 0:11:26'I took my eye off the ball for a split second,
0:11:26 > 0:11:28'that was all it took, and I knew I'd done it.
0:11:28 > 0:11:31'I knew right away I'd done it.
0:11:31 > 0:11:33'So the fear is there.'
0:11:33 > 0:11:35Down we go!
0:11:35 > 0:11:36On the days Thomas goes to school,
0:11:36 > 0:11:40agency carers come in to help him get up and ready.
0:11:40 > 0:11:43But there's no home care service later in the day,
0:11:43 > 0:11:46or at weekends, or during the school holidays.
0:11:48 > 0:11:52Doing this four times a day takes a lot out of two of you,
0:11:52 > 0:11:54let alone just one.
0:11:54 > 0:11:56As I say, Trisha's...
0:11:58 > 0:12:00..not as young as she used to be either,
0:12:00 > 0:12:02and Thomas is getting heavy.
0:12:02 > 0:12:03- Cheers, mate.- He's a big boy.
0:12:20 > 0:12:23'Tricia says she's been pleading with Inverclyde Council
0:12:23 > 0:12:25'to pay for agency carers to come in more often
0:12:25 > 0:12:28'to help her change Thomas.
0:12:28 > 0:12:31'She says it makes economic sense to fund some extra help
0:12:31 > 0:12:35'so she can continue to care for Thomas at home.'
0:12:35 > 0:12:37They'll say £34,000 a year
0:12:37 > 0:12:40will put four services in here a day.
0:12:40 > 0:12:43But its £213,000 a year if Thomas goes into care,
0:12:43 > 0:12:45so where's the logic?
0:12:45 > 0:12:48And do you have to wait until you're absolutely dropping off your feet?
0:12:51 > 0:12:53Come on, son.
0:12:55 > 0:12:58'It's taken hours to get out the door,
0:12:58 > 0:13:00'just to nip up to the local garden centre.'
0:13:01 > 0:13:05'We can't go on long journeys now. Things are becoming more difficult.
0:13:05 > 0:13:08'His pads are maybe only comfortable I would say
0:13:08 > 0:13:09'for a maximum of five hours.'
0:13:11 > 0:13:13There's no hoists anywhere,
0:13:13 > 0:13:19so there is no possible way Thomas could be changed.
0:13:19 > 0:13:23He's a young adult now, he's not a wee boy anymore.
0:13:23 > 0:13:25Things are becoming more difficult.
0:13:33 > 0:13:36'It's just really to get out and about. It helps us as well.
0:13:36 > 0:13:39'Sitting in the house 24 hours a day, it's a nightmare.'
0:13:39 > 0:13:42'If you know he's been out as well, you feel better.'
0:13:51 > 0:13:54Is that your wind chimes, Thomas, is it?
0:13:54 > 0:13:57Is that your wind chimes? Will we go and see the fish?
0:13:57 > 0:13:59Come on, we'll go and see the fish.
0:13:59 > 0:14:00As a teenager now...
0:14:02 > 0:14:05he's sitting in a chair when he should be out,
0:14:05 > 0:14:07you know, enjoying life.
0:14:09 > 0:14:12Do you see other kids his age?
0:14:12 > 0:14:14Yeah.
0:14:14 > 0:14:17In fact, he's got a wee pal, Jonathan,
0:14:17 > 0:14:19who was born at the same time as him.
0:14:19 > 0:14:21I see him out and about now
0:14:21 > 0:14:25and I say to myself, "Och, that could have been Thomas."
0:14:25 > 0:14:27It's quite hard, it is.
0:14:30 > 0:14:31As I say, he's happy.
0:14:31 > 0:14:34He's a happy wee boy, as you've seen.
0:14:37 > 0:14:39Tricia say she's been battling
0:14:39 > 0:14:43to persuade Inverclyde Council to fund more care support.
0:14:43 > 0:14:47So far, she says she's been getting nowhere.
0:14:48 > 0:14:50'I happen to be there
0:14:50 > 0:14:53'when Trisha gets an unexpected call from the council.'
0:14:53 > 0:14:55Hello.
0:14:55 > 0:14:59Oh, right, and that's going to be on what date, did you say?
0:14:59 > 0:15:01Oh, so I've got two appointments?
0:15:02 > 0:15:04- Are you trying to impress the BBC? - SHE LAUGHS
0:15:07 > 0:15:09Oh, you would have been coming to see me?
0:15:13 > 0:15:16Right. Right.
0:15:16 > 0:15:18Right, thank you, bye!
0:15:21 > 0:15:25- That sounded interesting - Oh, I'm in heaven!
0:15:25 > 0:15:27SHE LAUGHS
0:15:27 > 0:15:29Do you know, that woman has never phoned me?
0:15:29 > 0:15:32She has never. She has returned a call if I've phoned her.
0:15:32 > 0:15:34She has never phoned me.
0:15:34 > 0:15:35I've had about...
0:15:35 > 0:15:39'It looks as though the tide may be turning for Trisha.'
0:15:39 > 0:15:43Yes, yes! They're listening! They're listening!
0:15:44 > 0:15:47I've got a review with everyone.
0:15:47 > 0:15:49From his physiotherapist,
0:15:49 > 0:15:52to the school nurse, to Countryview,
0:15:52 > 0:15:56to me, to the physiotherapist,
0:15:56 > 0:15:57the occupational therapist.
0:15:57 > 0:16:01They've all been invited to give their input into this meeting
0:16:01 > 0:16:04to see what care package Thomas needs.
0:16:04 > 0:16:07I've only been trying for two years.
0:16:07 > 0:16:10Two years to get someone to listen!
0:16:10 > 0:16:12Whoo-hoo!
0:16:12 > 0:16:14I'm so pleased!
0:16:14 > 0:16:16'It's a breakthrough.
0:16:16 > 0:16:20'In three weeks' time, Trisha will have her big meeting at the council.
0:16:20 > 0:16:22'It really could change her life.'
0:16:23 > 0:16:24But back at the Mahmoods',
0:16:24 > 0:16:28Rucksana doesn't feel like there's any hope of progress.
0:16:28 > 0:16:29A little while back,
0:16:29 > 0:16:31I used to think, "Oh when he grows up,
0:16:31 > 0:16:33"I'll have time to myself."
0:16:33 > 0:16:36I just kept on telling myself this, to carry on.
0:16:36 > 0:16:39It's going to get better, it will get better, he'll find a job,
0:16:39 > 0:16:43he'll find friends, somebody out there will be able to help us.
0:16:43 > 0:16:47But now, I've, erm...nothing.
0:16:47 > 0:16:50I know nobody's out there that's going to help us.
0:16:50 > 0:16:52I know nothing's going to happen.
0:16:52 > 0:16:55And I know this is the way it's always going to be.
0:16:55 > 0:16:56Where are you, Kasim?
0:16:56 > 0:16:58'Where are you?'
0:16:58 > 0:17:00No I need to know where you are first.
0:17:00 > 0:17:01'You tell me where you are.'
0:17:01 > 0:17:04Kasim, could you please tell me where you are?
0:17:04 > 0:17:06'It's not long before I get a glimpse
0:17:06 > 0:17:09'of how unpredictable life can be.'
0:17:09 > 0:17:12- What do you mean?- I mean what are you doing?- I've just been so upset.
0:17:12 > 0:17:15- Do you know how worried I've been? - Are you OK?- Yeah, I'm OK.
0:17:15 > 0:17:18Honestly, you have to stop doing this, Kasim.
0:17:18 > 0:17:22- I was been so worried.- OK. - Come on out.- OK. Right.
0:17:23 > 0:17:27I need to put the other washing there, Stop that!
0:17:27 > 0:17:29I need to put the washing there.
0:17:29 > 0:17:33Just leave it there just now, that's why it's smelling.
0:17:33 > 0:17:35Because you haven't rinsed it?
0:17:35 > 0:17:37Just leave it there.
0:17:37 > 0:17:40I want a friend so he should just look at it that way.
0:17:40 > 0:17:41Just stop there.
0:17:41 > 0:17:45I can't, because that woman... Kasim! Kasim! There's a car behind me!
0:17:47 > 0:17:49Sorry, sorry.
0:17:59 > 0:18:01'Do you feel that you can carry on as things are?'
0:18:01 > 0:18:03'No.'
0:18:08 > 0:18:10I'm struggling.
0:18:10 > 0:18:13I'm struggling. It's almost like, erm...
0:18:13 > 0:18:16Do you know, there's a very fine line
0:18:16 > 0:18:19to when you're sane and when you're insane.
0:18:19 > 0:18:23I'm struggling to keep on this side of it.
0:18:23 > 0:18:28My fear is, what is going to become of him when I'm not here?
0:18:30 > 0:18:32Because I advocate on his behalf,
0:18:32 > 0:18:35I try so hard, I fight this department,
0:18:35 > 0:18:39I speak to this department, and I can't get through.
0:18:39 > 0:18:41Nobody wants to listen,
0:18:41 > 0:18:44and what chance does this young man have to be heard?
0:19:06 > 0:19:09It's a long-awaited day for the Arthur family.
0:19:09 > 0:19:12Thomas is going off to his respite centre for 4 nights,
0:19:12 > 0:19:14which means Tricia and Tommy
0:19:14 > 0:19:16should be able to have a break.
0:19:18 > 0:19:21Bye!
0:19:23 > 0:19:26'You always know when respite's due.
0:19:26 > 0:19:28'Your body tells you.
0:19:28 > 0:19:30'And it was quite a long period,
0:19:30 > 0:19:33'you know, to be working 24/7. It's hard.
0:19:33 > 0:19:36'He'll come back from respite on Friday,
0:19:36 > 0:19:38'all going well.'
0:19:39 > 0:19:42It will recharge my batteries. It will.
0:19:42 > 0:19:44It'll be good.
0:19:44 > 0:19:48I love respite. I never used to, and I used to feel guilty for saying it,
0:19:48 > 0:19:50but I'm only human.
0:19:59 > 0:20:02Today is also the day of Tricia's meeting at Inverclyde Council
0:20:02 > 0:20:06to review Thomas' care needs.
0:20:06 > 0:20:09All of his key workers from social work, education and the NHS
0:20:09 > 0:20:11will be there.
0:20:12 > 0:20:14She's taken her sister, Roseanne,
0:20:14 > 0:20:16along to the meeting for moral support.
0:20:16 > 0:20:19There's a lot riding on this,
0:20:19 > 0:20:22because what happens in the next hour
0:20:22 > 0:20:24could transform their lives.
0:20:25 > 0:20:26It looked good.
0:20:26 > 0:20:30I sort of got over my point and they've decided...
0:20:30 > 0:20:33Everyone who was there,
0:20:33 > 0:20:35all Thomas' key workers who were all there,
0:20:35 > 0:20:38are all in agreement that Thomas does need a lot of care.
0:20:38 > 0:20:42So hopefully, hopefully, it's going to come out well.
0:20:45 > 0:20:50Thomas stays at Countryview for three or four nights most months.
0:20:50 > 0:20:52It's a respite home run by Quarriers.
0:20:54 > 0:20:58'He's been coming here for years and the staff know him well.'
0:21:01 > 0:21:04Yes! Oh, my goodness!
0:21:04 > 0:21:06'If Thomas goes to respite now,
0:21:06 > 0:21:10'Tricia and I actually sit and look at each other and say,'
0:21:10 > 0:21:12"Right, what are we going to do?"
0:21:12 > 0:21:16'because we've lost the ability to go out and socialise.'
0:21:22 > 0:21:26Respite gives Tricia and Tommy a much-needed break most months.
0:21:26 > 0:21:29But it's not enough to allow Tommy to get back to work.
0:21:32 > 0:21:35He's needed at home to help with Thomas' care on a daily basis.
0:21:37 > 0:21:38How's that?
0:21:40 > 0:21:43Last year, I got really depressed because I couldn't go out and work,
0:21:43 > 0:21:45couldn't bring in a wage, couldn't provide.
0:21:45 > 0:21:48I feel like a failure now,
0:21:48 > 0:21:52because I've not been able to provide what I should be able to provide.
0:21:52 > 0:21:55So, that's... It's quite hard.
0:22:12 > 0:22:13There's no rest for Rucksana.
0:22:13 > 0:22:17She's says she's still struggling to get support for her son, Kasim.
0:22:17 > 0:22:21But she doesn't think he's being offered the right kind of help
0:22:21 > 0:22:23from Glasgow City Council.
0:22:23 > 0:22:25The only service that we've been really offered
0:22:25 > 0:22:29is from the social work department, for Kasim to take on a befriender.
0:22:29 > 0:22:31But Kasim feels he doesn't want anybody
0:22:31 > 0:22:35paid to come and be his friend.
0:22:35 > 0:22:37He wants to make friends himself.
0:22:37 > 0:22:40They just keep on offering us things that we don't need.
0:22:40 > 0:22:43I mean, they're offering us a home help
0:22:43 > 0:22:46and when we refuse that, they just turn round and say,
0:22:46 > 0:22:49"Well we're offering you things, you're not accepting them,
0:22:49 > 0:22:53"so, really, we've got nothing else to do for you."
0:22:53 > 0:22:57- So have they struck him off? - Yes, they have.
0:22:57 > 0:23:00I've received a letter recently
0:23:00 > 0:23:05saying that they've taken him off the social work department register.
0:23:05 > 0:23:07In fact, it's education services Kasim wants.
0:23:07 > 0:23:10The right school was never found for him.
0:23:10 > 0:23:12He went to more than a dozen.
0:23:12 > 0:23:14What he wants now is a tutor
0:23:14 > 0:23:16and support to go to college.
0:23:16 > 0:23:20His mum believes this would give his life direction
0:23:20 > 0:23:22and take the pressure off her.
0:23:22 > 0:23:27If he moves on, only then will I be able to move on in my own life.
0:23:27 > 0:23:30Just now, it seems as if it's stuck in a circle,
0:23:30 > 0:23:33you just run round and round and there's just no way out.
0:23:35 > 0:23:37What kind of person were you before?
0:23:37 > 0:23:39I was a very bubby person, a very outgoing person.
0:23:39 > 0:23:42I love to entertain, I love cooking.
0:23:43 > 0:23:47I used to make lots of dishes and invite friends over.
0:23:47 > 0:23:49I loved walking. I love reading.
0:23:49 > 0:23:51There's lots of things,
0:23:51 > 0:23:54but I can't do any of those now.
0:24:10 > 0:24:12I've come to catch up with the Arthur family.
0:24:12 > 0:24:15I had planned to pop in and see them at their house,
0:24:15 > 0:24:17but as it turns out,
0:24:17 > 0:24:20they're spending all their time this week at the hospital.
0:24:24 > 0:24:25'Thomas is hospitalised a lot.
0:24:25 > 0:24:28'Normally it's because of his fragile bones.
0:24:28 > 0:24:32'This time, it's not clear what's wrong
0:24:32 > 0:24:34'and, of course, he can't say where it hurts.'
0:24:34 > 0:24:38- Hello, hi!- Hi, how are you?
0:24:38 > 0:24:41- I'm fine. How are you guys? - We're fine.
0:24:41 > 0:24:43How is he?
0:24:43 > 0:24:46He's been in quite a lot of pain for over the last week,
0:24:46 > 0:24:48but he is coming on now, he's getting a lot better.
0:24:48 > 0:24:54We saw you when you were just out of a big council meeting,
0:24:54 > 0:24:57looking at your future care for Thomas.
0:24:57 > 0:24:59You were due to get a decision today.
0:24:59 > 0:25:02Have you got any update?
0:25:02 > 0:25:04No, nothing's moved.
0:25:04 > 0:25:07There's a new sort of system coming out just now
0:25:07 > 0:25:10and I was supposed to have a meeting on Monday about it,
0:25:10 > 0:25:13but we've had to delay it
0:25:13 > 0:25:17because Thomas is in hospital. And...
0:25:17 > 0:25:20respite, they don't review again till May,
0:25:20 > 0:25:23so I haven't heard anything about that.
0:25:23 > 0:25:26And I just feel as if we're starting to slow down again.
0:25:26 > 0:25:29How would you describe
0:25:29 > 0:25:31the way you've had to... struggle, really?
0:25:31 > 0:25:33Horrendous.
0:25:33 > 0:25:35You don't know who to go to.
0:25:35 > 0:25:37I mean, you're phoning one person
0:25:37 > 0:25:40and they're passing you on to somebody else.
0:25:40 > 0:25:43It's just a vicious circle. And you end up back at the same person again.
0:25:45 > 0:25:47Inverclyde Council say:
0:26:10 > 0:26:13I've also had an update on Kasim's case.
0:26:13 > 0:26:15Glasgow City Council have said
0:26:15 > 0:26:18that they've offered him a range of services over the years
0:26:18 > 0:26:20which he has declined.
0:26:20 > 0:26:23But I can see from letters that he's been sent
0:26:23 > 0:26:26that they simply closed his case after that.
0:26:26 > 0:26:29However, since we started filming,
0:26:29 > 0:26:33they have re-opened his case, they've written to him,
0:26:33 > 0:26:37and offered to reconsider his original requests
0:26:37 > 0:26:39for funding to help with his education.
0:26:39 > 0:26:42And the council have been on the phone to me
0:26:42 > 0:26:45just to let me know that Kasim and his mum
0:26:45 > 0:26:49should be able to expect good news on that front soon.
0:26:50 > 0:26:56A couple of years ago, the Scottish Government published this Carer's Strategy, with input from carers
0:26:56 > 0:26:58and the organisations which represent them.
0:26:58 > 0:27:02It says enough support should be provided
0:27:02 > 0:27:05to prevent them ending up at crisis point.
0:27:05 > 0:27:08But to the carers we've spoken to,
0:27:08 > 0:27:10it can read more like a work of fiction.
0:27:10 > 0:27:12I recognise that many carers don't receive
0:27:12 > 0:27:15the level of support and assistance that they require.
0:27:15 > 0:27:17And this is a strategy
0:27:17 > 0:27:20that's going to be implemented over a number of years
0:27:20 > 0:27:22and we have put in place a number of measures
0:27:22 > 0:27:26that will support and assist carers in a number of different ways.
0:27:26 > 0:27:28There is certainly more for us to do in this area
0:27:28 > 0:27:29and as a government,
0:27:29 > 0:27:32we're very committed to making sure that that happens.
0:27:32 > 0:27:36That sounds great, but you are two years into a five year strategy.
0:27:36 > 0:27:39For some people, it may be that we are not making progress
0:27:39 > 0:27:41as quickly as they would like us to make.
0:27:41 > 0:27:44But there should be no doubt there is a clear determination
0:27:44 > 0:27:47from our part, in Government, to make sure that the strategy
0:27:47 > 0:27:50is taken forward as effectively as possible.
0:27:51 > 0:27:56Carers aren't saints, or some kind of super-human class of people -
0:27:56 > 0:27:58they're people like you and me
0:27:58 > 0:28:01who've found themselves looking after someone they love.
0:28:01 > 0:28:03And if you're not already a carer,
0:28:03 > 0:28:08the chances are you'll find yourself caring at some point in your lives.
0:28:08 > 0:28:13It's a huge part of the way we look after people in need.
0:28:13 > 0:28:17So maybe it's time that supporting carers properly
0:28:17 > 0:28:21is as normal as caring itself.
0:28:21 > 0:28:25What's wrong? What happened?
0:28:25 > 0:28:28'There is a life. There's a life beyond caring.'
0:28:28 > 0:28:32'It's your right, as a person,'
0:28:32 > 0:28:34to have as near as normal a life
0:28:34 > 0:28:36as the person who lives next door to you.
0:28:45 > 0:28:50Subtitles by Red Bee Media Ltd