Ty Hafan hospice helps children live life to the full

Claims for Wales Medical Negligence Wales Giving comfort, care and support to life-limited children and young people is the purpose of the Ty Hafan hospice. But, as BBC One Wales documentary Beautiful Lives showed Kirstie McCrum, it’s also dedicated to improving quality of life for the whole family Number 15 – visit the beach at night. Number six – watch a sunrise. Number seven – watch a sunset. Perhaps surprisingly, Amy-Claire Davis’ bucket list isn’t full of outrageous demands. It’s while completing number 153 – planting a tree – from her wheelchair that Amy-Claire is introduced to viewers of the new BBC Wales documentary, Beautiful Lives. The four-part programme offers a glimpse inside the doors of Ty Hafan, the hospice for children who are not expected to live into adulthood. Amy-Claire, who is from Swansea, does list ‘own a Porsche (light blue, 911 turbo)’ at number 14, but on the whole, the 16-year-old has selected a thoroughly possible collection of activities to complete before she “kicks the bucket” as she puts it. It’s a phrase which is difficult to hear coming from a teenager, but chatty, intelligent Amy-Claire is one of the182 life-limited children who have been helped by the hospice since it opened in 1999. Housed in a bright white building on the South Wales coast, Ty Hafan offers support to terminally ill children to help them fulfil their potential. Amy-Claire’s mum Caroline says that Ty Hafan has been a lifeline for herself and her husband Stephen since their daughter’s referral. “When you’re a parent, having a child who’s ill is not a choice that you make. You have a baby, you expect things to be rosy in the garden. When it’s not, nobody asks you do you want to do it; you just get on with it. “So you don’t really think about it, it’s just life to us,” she explains. Amy is one of the many children whose condition is undiagnosed, but Caroline says it’s been around since she was born. “There were all sorts of names mentioned because they were working on the symptoms she presented at the time and then eventually puberty came and the disease went berserk. “We’ve got all sorts of nicknames for it – we’ve called it Teenage Ninja Mutant Turtle syndrome, and we’ve called it ACD syndrome – actually just her initials. But we’ve got no idea of the cause.” This October marks two years since Amy-Claire started attending Ty Hafan. Caroline says that her referral marked an important moment for the whole family. “At that point I think we were at the lowest of the low. Amy had been in hospital for a number of weeks and a bucketful of medication wasn’t making a difference. “Her weight was barely 6st. She slept all the time and when she didn’t sleep she screamed the house down with pain and then when she didn’t scream, she went into spasm like she was having a massive seizure but she was talking to you all the way through. “In October 2009, I think we began to realise – it was like an elephant sitting in the room and no one talked about it. “Then one day we asked the consultant who was working with her. I said, ‘I think I’m watching my child die’. I waited for her to say, ‘Don’t be silly’, and she didn’t. “Then she asked if we would like to be referred to the hospice.” When the referral came, Caroline and Stephen were struggling to deal with the situation, and would think nothing of grabbing just three hours of sleep a night. Ty Hafan represented a chance for some respite – but Caroline says Amy-Claire was apprehensive. “She thought it was going to be another hospital and she’d had enough of hospitals over the years. No disrespect to hospitals, but we didn’t want to see another hospital ward, another hospital doctor who could only look at that one particular thing. “We all went to Ty Hafan for lunch and a tour of the hospice, just to see what it was like, then we went in for the first time to stay in March. “We were in parents’ accommodation, and it was the first time that we had a night’s sleep for a long time. The first night Amy-Claire was great, but the second night she had been horrific. “The Ty Hafan staff said, ‘We cannot believe that you’ve been doing this on your own’.” With a list of 28 tablets a day, Amy-Claire is still on constant medication, but the periods of time she and her family get to stay in Ty Hafan have offered a helping hand that hospitals were no longer able to offer. “Hospitals do it for the right reasons, but by that point, we had no hope,” adds her mum. “You’d have a test and in an awful way you’d hope that test would be the one that would come back saying they knew what it was. “Now we’re not there anymore because we feel lucky because we haven’t got a name for it, so we’re not sitting here saying, ‘In a year’s time you won’t be able to do this or that’ – we’ve got no idea. “So while we’ve got no idea, we’ve got lots of hope. “Palliative care and Ty Hafan have taught us that. The big difference about palliative care is that it’s about looking at the whole child, the whole family, and not just about the medical consequences. “It’s about helping them live life to the full.” As one of the Ty Hafan staff members who helps children live life to the full, Hayley Mason is a human whirlwind. The busy family support practitioner has been working at the hospice since it opened, and currently handles around 35 families. With a background in working with children, her positive outlook and boundless enthusiasm make her perfect for the role. But she says that welcoming new families to the hospice is a tricky job. “It is a difficult balance because the families have just been told that their child fits our criteria which is a tough diagnosis for them to accept. “To be told that your child is likely to die before the age of 19 is difficult for anyone to comprehend. “The referral to Ty Hafan is very positive because they’re getting the specialist support that they need, but it’s kind of bittersweet because they have to accept that their child is likely to die as a child,” she explains. Although it might be easy to assume that Hayley’s job of caring for and counselling families is difficult, she doesn’t find it hard to stay positive. “A lot of people would assume that working in a hospice is sad, and there are days when we’ll leave here in tears and it is difficult, but on the whole, I’m so lucky to be here. “The children that I work with are amazing and bright and each day they teach you something new. “It’s such a happy place – we’ve shared as many tears through laughter as through sadness. There’s so much going on for the children, and the staff are really busy making sure that their days are full with as much fun as possible.” Mum-of-two Hayley says that she does get emotionally attached to her cases, and it is as hard to see the parents suffer as it is the children. “It’s difficult as a parent, your heart breaks for them. I would do anything to avoid them having to go through what they’re going through, but I realise that I can’t. “I can make things a little bit easier for them and I can accompany them on their journey, but I can’t take their pain away. “It would be wrong of me to try and assume that I could.” Through workers like Hayley, Ty Hafan offers aid throughout their journey with a family, no matter how difficult it can be. “Making end of life plans is the one thing that they’ve been putting off since they had the diagnosis, but a lot of families get a lot of comfort in the fact that they’re able to make decisions that will help them at what is the saddest time of their lives. “To be able to do that while they’re thinking a little clearer before it’s needed can be really powerful for them so when the time comes, they can just let their grief overcome them and we’ll take care of all the arrangements. “But we do it as gently as we can and at a pace that’s right for them,” she explains. In the final Beautiful Lives programme, the annual memorial is shown – a time when Ty Hafan families gather to remember the children who have passed away. It takes six and a half minutes for the names of the Ty Hafan children who have died to be read out, with pebbles bearing their names placed in a stream on the grounds. Hayley adds: “People say that the pebbles are really sad, but for me, I can look at those pebbles and remember every child whose name is on there. “I’ll remember something special about them, and I’ll sit there and have a little smile.” In her role as family support practitioner, Hayley works with Kirstie and Catherine Fields from Llanelli. After many years of suffering from an unidentified disease, the blonde, bright twins were diagnosed with Fields Condition – named for them – and they went to the hospice for the first time in May, a visit that is captured in Beautiful Minds. Mum Lyn says that it’s been a difficult road for the family. “When they were born they seemed fine and went through all the normal milestones. “The only thing that they did have were slight turns in their feet when they were walking.” The girls’ condition deteriorated as they got older. At four years of age Lyn was told Kirstie had the a form of cerebral palsy, and six months later, Catherine received the same diagnosis. By the time they were seven, the twins couldn’t walk without somebody holding their hands. “At that stage they thought that they had something as well as cerebral palsy and it’s just gone from there. “When they were nine everything was sent to a panel of researchers in London. “They filled 18 pots of blood to be tested for different things and we went up to Great Ormond Street,” Lyn explains. “They haven’t actually got cerebral palsy – they’ve got patterns for several things, but it’s not complete. “It’s like when you have a jigsaw and there are pieces missing,” she adds. The one thing that is certain is that Fields condition is progressive, and Kirstie and Catherine are deteriorating as they get older. “Up until two years ago, they could go to the bathroom and with a little bit of help they could dress themselves, but now we’re at the stage where they can’t even turn over in bed,” says their mum. When the girls were referred to Ty Hafan, Lyn says it was a blow. “When I had the letter to say that they had been accepted, I had mixed feelings. “It was lovely that they had been accepted, but then the reality hits you in the face, the reason why they have been accepted,” she confides. “On their first visit, they put their handprints in paint on the wall and loved it. There’s no gloom or doom there.” The film shows the twins, both shoppers, hitting the streets of Cardiff with Hayley, to get to know her better. And in Ty Hafan they were treated like typical girls their age. “They had a pampering afternoon where they had their nails done and a foot spa, then we had a curry night and a DVD – proper girly things,” says Lyn. “We were nervous going but then we didn’t went to come home. I’d go and live there tomorrow. “It’s really fantastic, but they can only go to Ty Hafan until they’re 19, so we’ve got to really make the most of the next two years.” Lyn says that the whole experience has given her and her daughters a lifeline that they didn’t know existed. “You think of it as a children’s hospice where children go to die. “Well, it is a children’s hospice, but it’s nothing like that at all. The help and support they give to families – I take my hat off to them. I think only really special people can do what they do.” source: walesonline.co.uk