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