0:00:02 > 0:00:04This programme contains some strong language
0:00:04 > 0:00:08On a beach in South Wales, where waves lap the shores and seagulls cry,
0:00:08 > 0:00:12children can be heard playing, singing and laughing merrily.
0:00:12 > 0:00:15This is Ty Hafan, a place where the families of children
0:00:15 > 0:00:19expected to die young learn to live life to the full.
0:00:20 > 0:00:24Butterflies are seen everywhere in Ty Hafan Children's Hospice.
0:00:24 > 0:00:30A metaphor for the short, yet beautiful lives that the charity help to create for the children.
0:00:31 > 0:00:36When a child is so unwell that they're not expected to live
0:00:36 > 0:00:39into adulthood, they turn to Ty Hafan.
0:00:39 > 0:00:43Referred in a time of need, they're in search of care and support.
0:00:43 > 0:00:48The hospice helps often over many years to fulfil every potential,
0:00:48 > 0:00:50and at the end of their lives,
0:00:50 > 0:00:54they're there to provide support, care and love.
0:00:59 > 0:01:02A brave teenager addicted to life
0:01:02 > 0:01:06and a family touched by warmth and kindness in their darkest hour.
0:01:06 > 0:01:10These are stories of humanity shining through in a time of adversity.
0:01:25 > 0:01:27Unlike many people's preconceptions,
0:01:27 > 0:01:32a children's hospice is not just a place where young people and children come to die.
0:01:32 > 0:01:35SHE SQUEALS
0:01:35 > 0:01:38LAUGHTER
0:01:38 > 0:01:40- Lizards.- Lizards?! Come here!
0:01:40 > 0:01:44Ty Hafan is more than a warm atmosphere. Hand-printed walls
0:01:44 > 0:01:48and beautiful surroundings, it's an ethos that encourages living
0:01:48 > 0:01:53life to the full, whether at the hospice itself or in the family home.
0:02:01 > 0:02:06The reason I have this little block on top of my shelves,
0:02:06 > 0:02:11it says, "Don't count the days, make the days count."
0:02:11 > 0:02:17Because I think so many people just go through life wishing away...
0:02:17 > 0:02:19days and weeks,
0:02:19 > 0:02:24and to me it seems like they just go through it with their eyes shut,
0:02:24 > 0:02:27like they don't experience anything.
0:02:27 > 0:02:32I think, because of my condition, in a way, I'm sort of forced to
0:02:32 > 0:02:39make the most out of every day and I don't say that in like a cheesy way.
0:02:39 > 0:02:44I genuinely do get up in the morning and think, "Right.
0:02:44 > 0:02:47"What do I really want to do today that I can do?"
0:02:47 > 0:02:51Leave that on the pile and I need to go and get some bits now.
0:02:51 > 0:02:54So everybody watch out because I'm reversing out.
0:02:54 > 0:02:57Today, Amy Claire Davies has invited all her friends
0:02:57 > 0:02:59and family to join her on a trip to the park.
0:03:02 > 0:03:04Ty Hafan have arranged for her to plant a tree -
0:03:04 > 0:03:07number 163 on her bucket list.
0:03:07 > 0:03:10What have you drunk? I didn't know this.
0:03:10 > 0:03:15My bucket list is my list of... I think it's 240 things at the minute,
0:03:15 > 0:03:21that I want to do in my life before I kick the bucket, as we say.
0:03:21 > 0:03:24So the full name is The Before I Kick The Bucket List.
0:03:24 > 0:03:29I kept thinking of things I wanted to do, but I realised
0:03:29 > 0:03:32I was never doing them, so I had a little notebook
0:03:32 > 0:03:34and I'd jot them down and say,
0:03:34 > 0:03:39"Right. I want to go for a ride in a speedboat and I want to own a Porsche,"
0:03:39 > 0:03:42or stuff that for me would be really difficult.
0:03:42 > 0:03:44I've said that I'd like to travel around the world,
0:03:44 > 0:03:47but again that would be quite difficult,
0:03:47 > 0:03:50because people don't like having me on a plane in case I keel over
0:03:50 > 0:03:53in the aisle and they have to do something about it.
0:03:53 > 0:03:58- We have one bucket list. - Who did you ask out on a date?
0:03:58 > 0:04:01Nobody from school, just to make it clear.
0:04:01 > 0:04:03GROANING
0:04:03 > 0:04:07- Everybody say, "Rottweiler!" - Rottweiler!
0:04:07 > 0:04:10Amy is Steve and Caroline's only child, but today they've got
0:04:10 > 0:04:15their hands full with an army of school mates that have come to support her.
0:04:15 > 0:04:18It's a happy occasion. She's putting something down on her...
0:04:18 > 0:04:21It's another thing down on the list, something she wants
0:04:21 > 0:04:23and we all want that for her.
0:04:23 > 0:04:25- It's nice to share that moment with her.- Yeah.
0:04:25 > 0:04:28I'm liking the matching outfits.
0:04:28 > 0:04:31Ty Hafan's been a big part of Amy Claire's life
0:04:31 > 0:04:34since she was referred there in 2009,
0:04:34 > 0:04:37but it became clear that there was no known cure for her
0:04:37 > 0:04:41- and her school friends hear all about the place. - How are you? Smelly.
0:04:41 > 0:04:45It is a bit scary, because you hear that hospices are for people
0:04:45 > 0:04:48who don't have much hope and it's a place for people to die,
0:04:48 > 0:04:53but Ty Hafan is more like an oppurtunity for children to have more of a life.
0:04:53 > 0:04:57Thinking about it, when you said like it's not much hope for kids,
0:04:57 > 0:05:02- but Amy Claire, she's got a lot of hope going for her.- She's a fighter. - She's always there and we love her.
0:05:02 > 0:05:06Ty Hafan helps her so much as well, it gives Caroline and Steve a break.
0:05:06 > 0:05:09It's really good for her because she gets to do some much there.
0:05:09 > 0:05:12It's much better than hospitals, more homely.
0:05:12 > 0:05:14Oh! Get down there!
0:05:16 > 0:05:18Amy Claire's illness is a mystery.
0:05:18 > 0:05:21Move your bum down there, everyone!
0:05:21 > 0:05:23No-one knows why her body systems are closing down.
0:05:24 > 0:05:26But it's left her in constant pain
0:05:26 > 0:05:29and in need of round-the-clock medical care.
0:05:34 > 0:05:37He's planting a blossoming cherry tree today,
0:05:37 > 0:05:40which will for ever look over the park...
0:05:40 > 0:05:42Standing by Amy's side, as ever,
0:05:42 > 0:05:45in all that she does, are her parents Caroline and Steve.
0:05:45 > 0:05:49..For everyone she meets and in our case, a beautiful, wonderful daughter.
0:05:49 > 0:05:52A couple of us were thinking that I should just say this.
0:05:52 > 0:05:54Most people have a week after they're dead.
0:05:54 > 0:05:59I thought, "Why have that when I'm not dead? Let's have a party while I'm here instead."
0:05:59 > 0:06:02So I'm just going to read a short poem and say a few words.
0:06:02 > 0:06:05The poem's called In This Short Life.
0:06:05 > 0:06:07In this short life, there only lasts an hour,
0:06:07 > 0:06:10how much and how little is within our power,
0:06:10 > 0:06:15I chose that poem because it's all about how much is
0:06:15 > 0:06:18within our power, obviously,
0:06:18 > 0:06:22to have an amazing life, to live your life to the full
0:06:22 > 0:06:26and I think that's something really important,
0:06:26 > 0:06:28that I want everyone to learn from the bucket list.
0:06:28 > 0:06:32I'd just like to say thank you to everyone who's come today.
0:06:32 > 0:06:35It's a bit overwhelming to see everyone all in one group,
0:06:35 > 0:06:39but it's amazing to know I've got a lot of support behind me.
0:06:39 > 0:06:41Thank you very much for coming.
0:06:41 > 0:06:43APPLAUSE
0:06:46 > 0:06:49I wanted to plant a tree because I wanted to do something that
0:06:49 > 0:06:54everyone would be able to see and it would be like a part of me was there,
0:06:54 > 0:06:59I'd done that and there's a plaque there with your name on it.
0:06:59 > 0:07:03I like the way you've got me a big clog! Oh I missed!
0:07:03 > 0:07:05LAUGHTER
0:07:16 > 0:07:20It was just really lovely. A lovely ceremony, really, really nice
0:07:20 > 0:07:23and it weren't sad at all, so I don't know why I'm crying.
0:07:23 > 0:07:25It was really, really lovely.
0:07:25 > 0:07:29So we're going to go and have a cup of tea now, and recover.
0:07:31 > 0:07:34I don't think I would be me. SHE SOBS
0:07:34 > 0:07:37Sorry, I don't know why I'm crying.
0:07:39 > 0:07:41Just because they're amazing.
0:07:44 > 0:07:45They're the best.
0:07:48 > 0:07:51I wouldn't be who I am if I didn't have the friends
0:07:51 > 0:07:52and family that I have.
0:07:57 > 0:08:02A major issue for all of Ty Hafan's families
0:08:02 > 0:08:04is the vast amount of care their children require
0:08:04 > 0:08:08often given over a period of months or years without a break.
0:08:08 > 0:08:12To help with this, the hospice offers regular respite throughout their child's life,
0:08:12 > 0:08:15giving families from all over South Wales
0:08:15 > 0:08:19a rest from their duties and allowing them to just enjoy being parents.
0:08:20 > 0:08:24The responsibility for the child's wellbeing is taken over
0:08:24 > 0:08:26by the trained staff of the hospice.
0:08:26 > 0:08:28The parents and siblings can also stay,
0:08:28 > 0:08:31or they can take a rare opportunity to do other things.
0:08:34 > 0:08:37Today, an old friend is in for a short break.
0:08:37 > 0:08:39This is Ashley, Ashley Jenkins.
0:08:41 > 0:08:44You OK? You're a bit sleepy today, OK.
0:08:44 > 0:08:48Are you going to say hello to me?
0:08:48 > 0:08:51- Yeah? - SHE LAUGHS
0:08:51 > 0:08:56I knew I'd get a smile eventually. I knew I'd get one eventually.
0:08:56 > 0:09:01All the girls are waiting for you. Shall we go and find them? Shall we go and find them?
0:09:01 > 0:09:0617-year-old Ashley is mad about girls, football, and Top Gear.
0:09:06 > 0:09:10Hayley Mason of the family support team has known Ashley and his parents
0:09:10 > 0:09:14since shortly after Ty Hafan opened their doors 12 years ago.
0:09:14 > 0:09:18- How's he been? - As well as can be expected.
0:09:18 > 0:09:20Whilst pregnant, mum Nicola was affected
0:09:20 > 0:09:24by an extremely common virus, similar to the cold sore virus,
0:09:24 > 0:09:27In most cases it's harmless, but Ashley was one of the unlucky few
0:09:27 > 0:09:31and it caused severe brain abnormalities, leaving him
0:09:31 > 0:09:36profoundly deaf, unable to speak and suffering regular seizures.
0:09:36 > 0:09:38He has his good days, he has his bad days
0:09:38 > 0:09:41and when he has his good days, everybody knows.
0:09:41 > 0:09:46SHE LAUGHS He's quite happy and everything.
0:09:46 > 0:09:50He's normally smiling and full of the joys of spring, as they say.
0:09:50 > 0:09:54But he won't let me put his shoe on at the moment.
0:09:54 > 0:09:57You've got cheeky smiles today, haven't you?
0:10:02 > 0:10:07For a boy like Ashley, who seldom gets an opportunity to go outdoors,
0:10:07 > 0:10:10an Easter egg hunt in the grounds is a rare treat.
0:10:10 > 0:10:13- Look, there he is! There's the rabbit.- Oh, there's the rabbit!
0:10:13 > 0:10:15Oh, Gosh!
0:10:15 > 0:10:17Today, like many days,
0:10:17 > 0:10:20the beautiful, tranquil gardens at Ty Hafan
0:10:20 > 0:10:21are being taken over
0:10:21 > 0:10:24by a marauding mass of screaming children and staff,
0:10:24 > 0:10:26and nobody is left out.
0:10:26 > 0:10:29THEY LAUGH
0:10:29 > 0:10:31For some of the parents here today,
0:10:31 > 0:10:33if they wasn't in Ty Hafan they'd never do an Easter egg hunt,
0:10:33 > 0:10:36because they wouldn't have the opportunity
0:10:36 > 0:10:39because our children perhaps don't go to schools that do that.
0:10:39 > 0:10:41It's pretty special for them.
0:10:41 > 0:10:43Well, Ashley I think won the Easter parade.
0:10:43 > 0:10:45BOTH: Yay!
0:10:46 > 0:10:50- Look at that.- Oh, look at that! - Are you going to sleep?
0:10:50 > 0:10:52He's not impressed today, is he? I'll leave him there.
0:10:55 > 0:10:59Suddenly, but quietly, Ashley suffers a seizure,
0:10:59 > 0:11:03a period of intense abnormal brain activity.
0:11:03 > 0:11:07It's a difficult thing for step-dad Steve to witness.
0:11:07 > 0:11:11Painful. Very painful, because you can't do nothing.
0:11:11 > 0:11:12You want to help him, but you can't.
0:11:12 > 0:11:14It really, really hurts.
0:11:14 > 0:11:18'He's come out of hospital about three or four weeks ago,
0:11:18 > 0:11:21'because he was having seizures of two and a half hours,'
0:11:21 > 0:11:22an hour and a half.
0:11:22 > 0:11:24And they were quite...
0:11:24 > 0:11:27He was even quite frightened in them.
0:11:27 > 0:11:29And to watch him being frightened
0:11:29 > 0:11:31is hard to watch as well, on his face,
0:11:31 > 0:11:34because he's very scared, very anxious.
0:11:34 > 0:11:38Yeah, he's coming back round now, he is. So...
0:11:40 > 0:11:41'Sometimes with the seizures,'
0:11:41 > 0:11:44a lot of children can end up in intensive care as well.
0:11:44 > 0:11:46At the moment, Ashley hasn't,
0:11:46 > 0:11:50but there's been quite a few times where it's been quite close there. But...
0:11:50 > 0:11:52Which is heart-breaking to watch as well
0:11:52 > 0:11:55and watching him go through the pain afterwards, as well.
0:11:55 > 0:11:59- Daddy push you down, yeah?- Get you in bed and push you, yeah?- OK?
0:11:59 > 0:12:03- Daddy'll give you cwtches. - Shall I put you in bed and cwtch you?- Yeah.
0:12:03 > 0:12:04He'll have cwtches with Dad now.
0:12:09 > 0:12:11AMY CRIES OUT IN PAIN
0:12:13 > 0:12:14Shhh.
0:12:14 > 0:12:18Pain is a massive issue in Amy's life.
0:12:18 > 0:12:20She takes 28 different drugs every day,
0:12:20 > 0:12:24including the some of the strongest pain-relief drugs available.
0:12:30 > 0:12:33'I have pain all the time,
0:12:33 > 0:12:36'which is probably quite hard for someone to understand.
0:12:36 > 0:12:40'But I've got used to it...
0:12:40 > 0:12:45'and so we call this pain that I have all the time background pain.'
0:12:45 > 0:12:48So we use the fentanyl patch
0:12:48 > 0:12:51to, like, help control the background pain.
0:12:51 > 0:12:55And then the paracetamol and the oramorph
0:12:55 > 0:12:58are for what we call breakthrough pain.
0:12:58 > 0:12:59OK, are you off are you?
0:12:59 > 0:13:04Life is a constant blur of coming and going for Caroline and Steve,
0:13:04 > 0:13:05who both work part-time,
0:13:05 > 0:13:08as well as tending to their daughter's complex medical needs.
0:13:08 > 0:13:13Soon, Amy will take a short break at Ty Hafan,
0:13:13 > 0:13:14which will give her parents a chance
0:13:14 > 0:13:17for their first night away for many years.
0:13:17 > 0:13:21It's really hard for people to understand, I think, that we are...
0:13:21 > 0:13:27We are basically full-time carers, as well as being parents.
0:13:27 > 0:13:33So we are full-time caring, full-on. We never, ever stop caring.
0:13:33 > 0:13:35Nobody comes along and says, "Would you like to?"
0:13:35 > 0:13:38That doesn't happen. It's not a choice you make.
0:13:38 > 0:13:40And it's like any other parent -
0:13:40 > 0:13:44you don't get an instruction book for looking after a young person like Amy...
0:13:44 > 0:13:47and it's really hard.
0:13:47 > 0:13:50What happens if you unclamp it before it's screwed in, Amy?
0:13:50 > 0:13:53- Puke.- I throw up through my tube all over the...
0:13:53 > 0:13:56It's like when a hosepipe is let go of...
0:13:58 > 0:14:00..and it has happened before.
0:14:07 > 0:14:10When their doors first opened in 1999,
0:14:10 > 0:14:13all of Ty Hafan's work was done within the building.
0:14:13 > 0:14:18Over the years, they've evolved to fulfil the needs of families,
0:14:18 > 0:14:21and now do much of their work reaching into people's homes,
0:14:21 > 0:14:22learning about their lives
0:14:22 > 0:14:24and tailoring their care accordingly.
0:14:27 > 0:14:31Today, Hayley's off to Abertysswg in the Rhymney Valley
0:14:31 > 0:14:32to visit Ashley Jenkins.
0:14:36 > 0:14:38Ashley is fanatical about Everton Football Club.
0:14:40 > 0:14:42- Oh... Crash! - THEY LAUGH
0:14:42 > 0:14:45Mum Nicola struggled for many years on her own
0:14:45 > 0:14:47to bring up Ashley and his brothers and sisters
0:14:47 > 0:14:51until step-dad Steve came into their lives 8 years ago.
0:14:54 > 0:14:57Coming to a family, you know, with just normal kids, is hard enough.
0:14:57 > 0:15:00And, you know, when I met Ashley,
0:15:00 > 0:15:01Nic said to me, like, you know,
0:15:01 > 0:15:04it's up to you if I want to get involved or not.
0:15:04 > 0:15:07You know, she didn't force me or nothing.
0:15:07 > 0:15:11And, like, I wanted to know as much as I could,
0:15:11 > 0:15:14as much as I could care about him and love him...
0:15:14 > 0:15:17And the more I got to know him, the more loving it was,
0:15:17 > 0:15:18and rewarding it was.
0:15:18 > 0:15:23I knew him when he was well and...
0:15:23 > 0:15:26and we just bonded straight away.
0:15:26 > 0:15:28I've learnt his crafty ways and how he is.
0:15:28 > 0:15:31He's have wrapped me round his finger, cos every time...
0:15:31 > 0:15:33If I go to the toilet in the middle of the night,
0:15:33 > 0:15:36he'll pretend to cough or he'll shout, so I'll go into him.
0:15:36 > 0:15:39And he'll play me up and I'll go in and in,
0:15:39 > 0:15:41and then I'll get so knackered I'll tap Nicola and go,
0:15:41 > 0:15:45"You'll have to look after him." She's only got to tell him once and that's it, he listens.
0:15:45 > 0:15:47And I think, "You bugger!" NICOLA GIGGLES
0:15:47 > 0:15:49Ashley - he is fab.
0:15:49 > 0:15:51He's such a cheeky little man,
0:15:51 > 0:15:55I've known him for about... 12 years now,
0:15:55 > 0:15:57since he was a little dwt.
0:15:57 > 0:16:02And now he's a young man, maturing, going into the adult world.
0:16:02 > 0:16:03'But he's quite a poorly young man
0:16:03 > 0:16:10'and we're having to have quite detailed discussions at the moment with his family
0:16:10 > 0:16:11'about future treatment,
0:16:11 > 0:16:15'and where we go from here, really, with regards to his conditions.'
0:16:17 > 0:16:18Is he out for the count?
0:16:18 > 0:16:19Rough night.
0:16:19 > 0:16:21- Did he?- Two big seizures.
0:16:21 > 0:16:24- Oh, love him, he is flat out.- Yeah.
0:16:27 > 0:16:30Would you say they're different seizures to the ones before?
0:16:30 > 0:16:34Yeah, they're different again. He's twitching with his shoulders and everything.
0:16:34 > 0:16:37And, his nails went blue, his tongue went blue.
0:16:37 > 0:16:38We had to give him oxygen as well.
0:16:38 > 0:16:42- Oh, love him.- So he's wacked out again.- No playing today then, Ash?
0:16:42 > 0:16:46- No.- Oh, we'll leave him to sleep it off.- Yeah. - Leave him to sleep it off.
0:16:47 > 0:16:50No-one knows how severe Ashley's seizures are,
0:16:50 > 0:16:54but they are now happening more frequently and lasting longer.
0:16:54 > 0:16:58- I can see him going in again. - Can you?- Yeah.
0:16:58 > 0:17:00It's the length of the seizure, you can't...
0:17:00 > 0:17:05I wouldn't want him to have them more regularly than he's having them. 45 is just too...
0:17:05 > 0:17:09- Is he waking up? - It's too much for him, Nic.- I know.
0:17:10 > 0:17:13- He's in seizure, is he, again? - Oh, no.
0:17:13 > 0:17:16Where's your clock for me to time it, hon?
0:17:16 > 0:17:17Hmm?
0:17:17 > 0:17:19It's difficult to gauge,
0:17:19 > 0:17:23but it seems his health over recent weeks is deteriorating rapidly.
0:17:25 > 0:17:26Waking up from his sleep.
0:17:26 > 0:17:30Is he having a seizure because he's waking up, or is he waking up from the seizure?
0:17:30 > 0:17:34- He's waking up with the seizure. - His eyes... - They're bloodshot as hell, they are.
0:17:34 > 0:17:35And his pupils...
0:17:35 > 0:17:38I'll just go and get the oxygen, just in case.
0:17:38 > 0:17:41For Ashley, seizures can be life-threatening.
0:17:41 > 0:17:43His breathing becomes shallow,
0:17:43 > 0:17:46and Nicola and Steve know all too well
0:17:46 > 0:17:49they need to be on hand with emergency medicine.
0:17:49 > 0:17:50Just a test us, is it?
0:17:50 > 0:17:53The little ones lead to the big ones then, tonight, don't they?
0:17:53 > 0:17:57- Is that what he's been like, not having long in between?- Yeah.- Yeah.
0:17:57 > 0:18:00After a few minutes, the seizure is over,
0:18:00 > 0:18:02and Ashley is left exhausted.
0:18:05 > 0:18:07Over the course of her career in Ty Hafan,
0:18:07 > 0:18:09Hayley has supported dozens of families
0:18:09 > 0:18:13up to, during, and after the death of their child.
0:18:13 > 0:18:14It's becoming clear to her
0:18:14 > 0:18:17that it's time to consider making plans to support the family
0:18:17 > 0:18:19should Ashley die.
0:18:19 > 0:18:20Are you holding my hand?
0:18:24 > 0:18:27'The reason that we feel that Ashley is...
0:18:27 > 0:18:33'perhaps coming to a stage where we want to be discussing end of life things with his parents'
0:18:33 > 0:18:36is because he's not quite the same, he's lost that little spark.
0:18:36 > 0:18:42And for us, that gives us an indication that perhaps something neurologically is deteriorating.
0:18:42 > 0:18:47It is part of his overall condition and it's something that we expected to happen,
0:18:47 > 0:18:49but for us, over the last five or six months,
0:18:49 > 0:18:51we've noticed a marked deterioration.
0:18:51 > 0:18:58So we feel these discussions are warranted now for Ashley, sadly.
0:19:09 > 0:19:13It's not every day a Bentley roars up the Ty Hafan driveway.
0:19:15 > 0:19:16They've pulled some strings
0:19:16 > 0:19:20and have managed to bring a special visitor to stay, in some style.
0:19:20 > 0:19:24Bucket list item number 24 of 250.
0:19:24 > 0:19:28You're going to get one of these on Mobility now, yeah?
0:19:28 > 0:19:32- Was it good? Did you enjoy?- Amazing. - Yeah.- Fantastic.
0:19:32 > 0:19:35Amy is in for a short break, and for the first time,
0:19:35 > 0:19:38she's staying without her parents.
0:19:38 > 0:19:42I've just been in a Bentley from home to Ty Hafan
0:19:42 > 0:19:44and it was amazing, and I want one.
0:19:44 > 0:19:47If anyone's watching, "Can you buy me one?"
0:19:47 > 0:19:50Before Steve and Caroline leave,
0:19:50 > 0:19:54they need to go through Amy's specific medical needs
0:19:54 > 0:19:55with the trained care staff.
0:19:55 > 0:19:57These are all Amy's medication.
0:19:57 > 0:20:00She's on, I think, roughly 25 tablets a day.
0:20:00 > 0:20:02That one's out of her emergency kit.
0:20:02 > 0:20:05Our house, our kitchen, is like a chemists.
0:20:05 > 0:20:07If she's had six consecutive hourly doses,
0:20:07 > 0:20:10nobody can give the seventh without advice.
0:20:10 > 0:20:12It's having confidence in the people looking after.
0:20:12 > 0:20:15You know they know her and they can look after her well.
0:20:15 > 0:20:17Amy's happy. That's the main thing,
0:20:17 > 0:20:19if she's not happy somewhere, we're not happy to leave her.
0:20:27 > 0:20:29A hospice is not a hospital.
0:20:29 > 0:20:34Here the focus is on treating the individual, not curing the illness.
0:20:34 > 0:20:36They have a team of professional nurses and care staff
0:20:36 > 0:20:39that make aim to keep the children comfortable,
0:20:39 > 0:20:41pain free, and as happy as possible.
0:20:43 > 0:20:47So during Amy's stay, she can chose to do what she wants, go shopping
0:20:47 > 0:20:51or to the cinema, or even tick off a few items on her bucket list.
0:20:51 > 0:20:55A taste of the independence that other teenagers take for granted.
0:21:01 > 0:21:05Darkness often brings a time of agony for Amy.
0:21:05 > 0:21:07But with the care team by her bedside,
0:21:07 > 0:21:11her first night away from her parents is no worse than any other.
0:21:21 > 0:21:25Mam and Dad have gone on holiday to North Wales.
0:21:28 > 0:21:32I think that's the first weekend away from each other
0:21:32 > 0:21:38we've had in... probably a good few years.
0:21:38 > 0:21:40Probably about four, five years.
0:21:41 > 0:21:45I was, like, a bit worried about it.
0:21:45 > 0:21:48I was trying not to think about it, but actually I've been fine.
0:21:48 > 0:21:53And I think if there was somewhere I'd want to be
0:21:53 > 0:21:57when my parents were away, I'd probably want to be here
0:21:57 > 0:22:00because I know, like, there's loads of people
0:22:00 > 0:22:04who can look after me if something does go wrong.
0:22:04 > 0:22:06And I've got loads of people for cuddles anyway
0:22:06 > 0:22:09if I can't have a hug off Mam or Dad.
0:22:11 > 0:22:14Amy's first stay on her own has been a success,
0:22:14 > 0:22:17and she hopes to return again later in the year.
0:22:18 > 0:22:20In the meantime, she'll sit her GCSEs,
0:22:20 > 0:22:24determined to make plans in defiance of her uncertain future.
0:22:28 > 0:22:31Hayley's preparing an end of life plan for Ashley,
0:22:31 > 0:22:33who she's known since he was a toddler.
0:22:33 > 0:22:37An end of life plan is a guideline for the all the professionals
0:22:37 > 0:22:40and family members involved in the care of a child
0:22:40 > 0:22:41who's expected to die.
0:22:43 > 0:22:46Doctors, health workers and, most importantly, the child
0:22:46 > 0:22:48and their family, can outline decisions
0:22:48 > 0:22:53on what they would prefer to happen as the condition deteriorates.
0:22:53 > 0:22:57They aim to give a child what they call a "good death."
0:22:59 > 0:23:01It's just, um...
0:23:03 > 0:23:06I don't know, I don't know if I can do it.
0:23:06 > 0:23:10If I lost him I'd lose a lot, a really lot, like.
0:23:11 > 0:23:16You know, it would obviously affect us all but, you know,
0:23:16 > 0:23:20just have to start off, start rebuilding again, isn't it?
0:23:20 > 0:23:24I'm just going to do basically what's best really for Ashley
0:23:24 > 0:23:28in the long run and then deal with my emotions afterwards then.
0:23:28 > 0:23:32So I just run with what's happening at the time and then afterwards,
0:23:32 > 0:23:37I sort of deal with everything when it's sort of over.
0:23:37 > 0:23:39Like I said to you, I've got to start building up
0:23:39 > 0:23:43my own personal barriers inside my head, you know.
0:23:43 > 0:23:44Cos...
0:23:44 > 0:23:48Nothing will always prepare you for it, like,
0:23:48 > 0:23:51but if you can set up something, it helps,
0:23:51 > 0:23:53like, in the long run, like, you know?
0:23:53 > 0:23:55Cos you've got to be strong for other people
0:23:55 > 0:23:57as well as yourself, like, haven't you?
0:23:59 > 0:24:01Today, Hayley needs to speak to Nicola, Steve,
0:24:01 > 0:24:05and older brother Josh to learn their wishes and fears
0:24:05 > 0:24:08surrounding Ashley's death.
0:24:08 > 0:24:10It's never an easy conversation.
0:24:10 > 0:24:13I know this is going to be a difficult discussion.
0:24:13 > 0:24:15Probably with lots of tears. But that's OK.
0:24:15 > 0:24:18If you want to stop at any time, then just say.
0:24:18 > 0:24:21And we can stop, have a cup of tea, have five minutes break
0:24:21 > 0:24:23or we can stop altogether, it's entirely up to you.
0:24:23 > 0:24:26- I'd better go and get tissues ready. - I've got some in my bag.
0:24:26 > 0:24:29- I know you well!- I know!
0:24:29 > 0:24:32If Ashley was to deteriorate,
0:24:32 > 0:24:35and if he was to have what we call an acute deterioration,
0:24:35 > 0:24:38so if he had a respiratory or cardiac arrest,
0:24:38 > 0:24:41have you thought about what you would actually do at that time?
0:24:41 > 0:24:45- Everything short of ventilation and intubation.- OK.
0:24:45 > 0:24:48Are you happy with that decision, then,
0:24:48 > 0:24:50that we wouldn't start cardiac massage
0:24:50 > 0:24:52and we wouldn't give mouth to mouth?
0:24:52 > 0:24:54- I'm happy with that. - That's the right decision, OK.
0:24:56 > 0:24:58If a child dies at home
0:24:58 > 0:25:01and they haven't got an advanced care plan or pathway in place,
0:25:01 > 0:25:05it's seen as a sudden and unexpected death.
0:25:05 > 0:25:08So what happens then is that very often an ambulance will be called
0:25:08 > 0:25:12and if the child has died then the police have to be informed
0:25:12 > 0:25:14because, obviously, to the ambulance crew,
0:25:14 > 0:25:16it's a sudden and unexpected death
0:25:16 > 0:25:20and then the police are called to the house and...
0:25:20 > 0:25:23in the occasions where I've worked with them on it,
0:25:23 > 0:25:25they've been, you know, been very sensitive
0:25:25 > 0:25:28but they've obviously got their own jobs to do,
0:25:28 > 0:25:30so they have to investigate.
0:25:30 > 0:25:31And also, without a plan in place,
0:25:31 > 0:25:34the children will automatically get resuscitated
0:25:34 > 0:25:39and taken to hospital and it's very much then out of the parents' hands
0:25:39 > 0:25:42because it's down to the clinicians that are dealing with the child
0:25:42 > 0:25:46as to what treatment they see fit and they may not always know the child,
0:25:46 > 0:25:49they won't have the notes perhaps in A&E.
0:25:49 > 0:25:51So, by doing the plans,
0:25:51 > 0:25:55we can kind of address those issues before there's a need.
0:25:55 > 0:25:58And what we will be asking you to do is to let us know
0:25:58 > 0:26:00- when you just needed time alone with him.- Yeah.
0:26:00 > 0:26:02Cos we don't want to interfere,
0:26:02 > 0:26:05we don't want to be in there with you all the time.
0:26:05 > 0:26:06We want to support you,
0:26:06 > 0:26:11but you need time as a family as well, to say your goodbyes.
0:26:11 > 0:26:12We'll be guided by you.
0:26:16 > 0:26:18I'm sorry, I don't mean to upset you.
0:26:18 > 0:26:20All right?
0:26:23 > 0:26:26It's, like, where the consultants have said
0:26:26 > 0:26:29he'd never live past his first birthday and stuff like that
0:26:29 > 0:26:31then I've sort of gone through different scenarios
0:26:31 > 0:26:34of different things in my head over the years.
0:26:34 > 0:26:38And a couple of times when he's been in A&E and everything
0:26:38 > 0:26:41and they said they don't think he's coming back
0:26:41 > 0:26:44and then he's popped his head up and laughed at us, which is Ashley.
0:26:44 > 0:26:48I think that's just the thing with Ashley, we expect it every time
0:26:48 > 0:26:50because he's done it a couple of times.
0:26:50 > 0:26:53You get a bit complacent with him, he's going to do it every time.
0:26:53 > 0:26:56But I know something's telling me
0:26:56 > 0:27:02that it's not going to be this time that he's going to come back
0:27:02 > 0:27:06so I normally go with my gut instinct and stay with that.
0:27:08 > 0:27:11With the plan now in place, the family can rest assured
0:27:11 > 0:27:13that whatever the future holds for Ashley,
0:27:13 > 0:27:15their wishes will be known...
0:27:15 > 0:27:18a source of comfort when the time comes.
0:27:18 > 0:27:20I've been involved with families
0:27:20 > 0:27:24where the children have died in hospital, at home and in the hospice
0:27:24 > 0:27:27and there's such a big difference to the support that they get
0:27:27 > 0:27:30and the choices that they can make.
0:27:30 > 0:27:34We had a young lad in here just after Christmas
0:27:34 > 0:27:37and he was in hospital on a ventilator
0:27:37 > 0:27:40and we knew that he wasn't going to pull through.
0:27:40 > 0:27:42So the parents decided it would be best for him
0:27:42 > 0:27:44to come to the hospice to die,
0:27:44 > 0:27:46because we'd known him for a couple of years.
0:27:46 > 0:27:48And he came and, in a way, it was so lovely.
0:27:48 > 0:27:51I know that's awful to say talking about a child's death
0:27:51 > 0:27:57but it was so beautiful, because he had his mum... Sorry,
0:27:57 > 0:28:00his mum and his dad and all his family around him
0:28:00 > 0:28:04and even little things that we did that made a difference to them.
0:28:04 > 0:28:07They were planning a big family party with fireworks
0:28:07 > 0:28:09and when he was taken ill, they kept saying to him,
0:28:09 > 0:28:11"Oh, we'll have your party, don't worry,
0:28:11 > 0:28:13"we'll have it when you come out."
0:28:13 > 0:28:16So when he came to us that day, they took the ventilator off him
0:28:16 > 0:28:19and we pushed his bed up towards the window
0:28:19 > 0:28:21and he was just there with his family, cwtched in,
0:28:21 > 0:28:24with his fireworks going off, surrounded by all the love
0:28:24 > 0:28:27that his family could give him and his dog at the end of the bed.
0:28:27 > 0:28:30And after we finished the fireworks, within about half hour he died
0:28:30 > 0:28:33and I thought that was just so beautiful for them
0:28:33 > 0:28:35and it was what they wanted.
0:28:35 > 0:28:38And as difficult and emotional as it was for us
0:28:38 > 0:28:40that's the difference that we make.
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