When exhausted dad Rob Jones first arrived at Tŷ Hafan in 2012, it was for a short break from the 24/7 care of his daughter Poppy, who has a life-limiting condition.
But after five years of receiving comfort, care and support from the children’s hospice, the 50-year-old father-of-five from Crickhowell will now be heading the team he calls “our extended family”, after recently being appointed Chief Executive.
A chartered accountant with both charity and commercial sector experience, Mr Jones will lead the charity as it continues to develop its services for children with life-limiting conditions and their families in homes and communities across Wales, as well as at its hospice in Sully, Vale of Glamorgan.
The charity’s chairman Martin Davies welcomed Mr Jones to the role, adding that he would bring “a unique insight” to the charity’s top job.
“Rob’s extensive knowledge and experience, which spans both charity and commercial sectors will enable him to successfully steer the charity as we move towards increasingly providing services in families’ homes and communities, as well at the hospice, in an ever-challenging environment.
“Rob has also experienced first-hand the difficulties faced by children with life-limiting conditions and their families, and the impact of hospice services on family life”, said Mr Davies.
“This gives him a unique insight into where the charity needs to invest its resources and how we can achieve our mission of providing the best possible standard of care to families across Wales, ensuring a short life is a full life.”
As the father of a child with a life-limiting condition, Mr Jones, together with his wife Rachel, 48, and 12-year-old Poppy’s siblings Izzy, 23, Sam, 21, Charlie, 17, and 14-year-old Alfie, felt the family had “no one turn to in a crisis” and was “exhausted and desperate” by the time they were referred to the hospice, when Poppy was seven.
“When we arrived at Tŷ Hafan, we were exhausted and didn’t know what to expect,” said Mr Jones.
“You can spend a lot of time explaining your experiences to people and, unless people have actually experienced that, there’s always a gap of understanding. At Tŷ Hafan that understanding was immediate and we could just relax as a family and just be ourselves.”
He added their first short break at the hospice was the “first time we were able to stay somewhere as a family” and “felt like a family holiday”.
“My wife Rachel and I didn’t have to get up in the night to look after Poppy, we had lovely home-cooked food and we could spend time with our three boys and our other daughter,” he said.
But another way the charity has helped the Jones family is to support the family through the difficult times and to help them to make Poppy’s life, however long that may be, full of joy, fun and precious moments with her loved ones.
“We were told Poppy wouldn’t live to see her first birthday, then her fourth. She’s now 12 and has done so many amazing things – including taking part in Tŷ Hafan’s Rainbow Run in a bathtub on wheels!” said Mr Jones.
“Tŷ Hafan has enabled my wife Rachel and I to embrace the situation with Poppy and we are making the most of it, turning it into something more positive and, hopefully, making a difference.
“For families like ours, the run-up to Christmas can be a scary time, as it’s the time of year you’re child can be most susceptible to illness and hospital stays.”
Since joining the charity, Mr Jones has been impressed by the dedication of not only the hospice’s care team but their supporting departments at head office.
“Two things that have surprised me since I joined the team are how engaged the whole organisation is with the cause and how hard it is to deliver great care.”
He added that his determination to help the charity provide the best possible care for families across Wales was driven by his experiences as a father.
“The biggest difference is perspective. When we’re making decisions I always think what will be the impact on families? That’s not just financial, it’s in the way we do things and the values and principles we work to,” he said.
“My goal is for the care that we provide to become a right for every child and every family that needs it. The best place to receive care is actually in the family home. It’s going to be quite a journey for us to achieve that, but it’s what’s best for families. In the meantime, we’ve got our fantastic hospice and our community team is growing.
“This is my single biggest achievement in my life; I will never top this. I have a level of determination that I wouldn’t have if my job wasn’t so important to me. It’s a vocation.”