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Wales Online
Wales Online
Health
Mark Smith

The pain and beauty of looking after life-limited children

The corridors of Ty Hafan are filled with the sound of children's laughter.

In the kitchen and dining area, popularly referred to as "the hub", a young boy is engrossed in a colourfully-illustrated novel.

While in the arts room opposite, infants are getting messy with paints and having a ball dressing up as their favourite superheros.

Countless hand prints adorn the walls leading out into a huge outdoor playground boasting breathtaking views of the Bristol Channel. 

It's a place of happiness, fun and hope. It's also a place where children go to die.

Since opening 20 years ago, Ty Hafan has supported more than 'Cheeky' six-year-old boy who 'touched everyone's hearts' dies two weeks before Christmas and their families.

The hospice, based in the village of Sully , Vale of Glamorgan, offers respite care, giving parents the chance to relax and recharge their batteries.

But it also provides medical and professional support to children who may have weeks, days or just hours left to live.

It is the unenviable job of the Ty Hafan staff to ensure the final moments of these children's lives are as comfortable and pleasant as possible.

Here, three of them talk candidly about why the hospice is just as much about celebrating life as it is about death.

Adrian Smith

Ty Hafan's Adrian Smith (Richard Swingler)

Adrian's experience of looking after severely unwell children is vast.

Before joining Ty Hafan three years ago, he worked for a decade as a paediatric nurse in accident and emergency at the University Hospital of Wales.

He said it is an "absolute privilege" to help young patients and their families through some unimaginably tough times.

"Every time a child comes in, you have to treat it like it's going to be their last visit and make it as special as you can," said Adrian, who has recently been seconded to the role of the head of governance and quality.

"We are very fortunate to be able to work with them. We get to watch the children - particularly those who are here for a long time - grow and develop which is a wonderful thing.

"You can just have so much fun with them. We definitely spend more time laughing than crying here."

But he admitted it was often challenging for the staff to initially gain the trust of parents who are understandably apprehensive about leaving their loved ones.

"The parents are going through the worst time ever, especially if their children are coming here for end-of-life care, " he added.

"But once they have been here for a couple of days they get to know the way we work and they soon settle.

"We are here to make the child as comfortable as possible and I think the parents see that quite quickly."

 

Ty Hafan's Adrian Smith (Richard Swingler)

Adrian said he doesn't think he will ever get used to seeing the young patients dying.

"You've got to retain that professional relationship with the family, but we are human as well so it is upsetting," he added.

"You just have to remind yourself that you're here to support that family and the child.

"I try not to take it home with me, but sometimes you can't help it. I think that's just a natural reaction after seeing a family who's suffering. It would be abnormal if you didn't."

As a dad-of-two himself, Adrian said the loss of a child hits home more.

"You can't empathise with someone who's lost a child," he said.

"I can't even begin to imagine being in that position. It's just something that shouldn't happen.

"That loss is something that motivates me to help those families as much as possible."

Candice St John

Ty Hafan lead nurse Candice St John (Richard Swingler)

With more than 13 years' experience, lead nurse Candice oversees the day-to-day running of the hospice.

It's her responsibility to take charge of the shift, dealing with complaints, organising care plans and assigning staff members best suited to each child.

She also retains her hands-on role as much as she can, waking the children up and even playing with them (if she's lucky).

But she admits that one of the most difficult aspects of the job for staff is to retain that fun atmosphere at Ty Hafan when they've just had to deal with a child's passing.

"You can have a child in one room taking their last breath, and then you come out of that room to loads of other children and their families jumping around and having a great time," said Candice.

"You support families in that end-of-life situation, but it's also about making precious memories for the child, making sure that everything is perfect to how that family wants it. To us, life goes on."

On a typical shift, Candice says there could be anything up to 11 members of nursing and care staff on duty at the hospice.

She often plays a part consoling her colleagues following a child's death.

‘I might die today from a condition so rare it has no name, but I have the same dreams as everyone’

"We find that most of the time the staff cope well [with a loss]. It's often harder when the children have been here a long time because you're more involved with the family," she added.

"You might see someone in the office having a cry and everybody giving them a hug, or they will come in for half an hour and have a chat to us.

"We can refer them onto counselling services too if needs be. We have got something called clinical supervision which really helps.

"But most of the time, people will just come in and have a cup of tea and a chat about what's happened and they feel a lot better then."

Candice said it was vital for her to try and switch off at the end of every shift.

"It's about turning your music up loud on the drive home, or going and reading a book or having a bath just to clear your head," she said.

"You don't want to take it home to your family.

"I don't know how people manage without Ty Hafan. These families would literally be in their homes, with their community staff, 24-7 without any breaks.

"To be able to bring their child here [for respite] means that they can go home and not have any staff in their house. That's major for them.

"It gives parents a break and some happiness. Then when they take their children home they can be better parents."

Adam Newland-Quraishi

Ty Hafan nurse Adam Newland-Quraishi (Richard Swingler)

As one of the newer members of staff at Ty Hafan, learning disability nurse Adam works both in the hospice and in the community.

He carries out assessments on children who are have challenging behavioural issues, but also provides medical care in Ty Hafan on a regular basis.

"You try and gather a picture of the child through the paperwork before you actually meet them," said Adam, who joined in August 2018.

"Then you might go and have breakfast with them, which is nice as you get to have that normality with them.

"After breakfast we plan the day and see what activities the child likes to do. One boy we had really liked water - so we just had a water fight.

"For me fun is the main thing. Trying to forget about all the other health needs is important as you want them to enjoy the day.

"Sometimes you really get that connection with the children. There was a boy recently that I had, and he remembered me from his first visit a while back, and he asked to have me again.

"For me that was amazing as I thought he'd forget all about me."

'Cheeky' six-year-old boy who 'touched everyone's hearts' dies two weeks before Christmas  

Ty Hafan nurse Adam Newland-Quraishi (Richard Swingler)

He said it was a big responsibility to look after someone's child, particularly when they have additional needs.

"You just have to show the parents that you're willing to do your utmost to look after them," he said.

Adam said since he joined he has supported one child who has died. But he said the death did not affect him as he was expecting.

"The death was so peaceful. Everything was so beautiful. Yes, it was sad but there was a lot of closure and the parents were happy with how it all went," he added.

"If I was to have something really emotionally difficult happen to me then I know I have the support of staff."

He described Ty Hafan as like a "second home" for staff and patients alike.

As well as offering a respite and palliative care service at its Sully base, Ty Hafan recently introduced its first ever community children’s nurse.

Sara Jones, who took on the role in December 2018, specialises in supporting children with life-limiting illnesses and their families across the county of Powys.

Her role includes visiting children in their own homes and helping them with their physical needs, pain management and symptom control.

She's also on hand to support families with their emotional and social needs.

Sara Jones is a community nurse with Ty Hafan (Ty Hafan)

Despite being Wales’ largest county, Powys has no district general hospital and no children’s wards unlike other health boards that Ty Hafan works with which means that there is limited access to children’s hospices.

Sara said: "The core values of this project are very similar to those of Ty Hafan in that it involves professionals working collaboratively on a model of care to offer families a choice of where their child should die - whether that be in hospital, a hospice or at home, with home being a realistic and resource prudent choice."

Ty Hafan is also set to undergo a massive "beached-themed" refurbishment project next year providing the funding can be secured. The aim is to complete it by July 2020.

The hospice's self-contained flat used by families receiving end-of-life care, 10 children’s bedrooms within the Care Wing, and the communal dining room and lounge will all be given a makeover.

Sara Webber, the interim head of fundraising and marketing, said: "The Care Wing forms a central part of our hospice and the bedrooms are fundamental to the specialised delivery of care and respite that Ty Hafan offers to families.

"The hospice renovations have been designed with the children and families at the centre of all plans and the building will offer a warm and welcoming non-clinical environment.

"These purpose-built bedrooms are used every day, providing private accommodation for the children when receiving care.

"Each room can be personalised to the individual child staying in it such as their favourite bedding, photos of their family and other soft furnishings, making it one of the most unique places in the hospice for families.

"It is important that we manage to provide a home from home feeling for the children and their families during their stays, while still being able to offer the 24/7 medical care that allows them to take a break from their everyday responsibilities.

"With the increase in occupancy rates at the hospice, it is vital that we invest and future proof the facilities to ensure that Tyˆ Hafan can continue in supporting children and families across Wales for the next 20 years."

For more information on the charity go to www.tyhafan.org

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