This week we have been showing our support of Hospice Care Week to raise awareness of palliative care services in the UK.
This year’s theme is “I heart my hospice” and aims to show the public exactly what their local hospice means to the families who use their services and why they are so important.
When you ask people what Tŷ Hafan means to them, answers are often varied and always very personal. One popular response is that Tŷ Hafan provides our families with memories and experiences they wouldn’t otherwise be able to have.
The pressure on parents living the role of carer, 24 hours a day, means that treasuring the moments that they have together can take a back seat. Everything we do at Tŷ Hafan is to ensure that our families can make the most of the precious time they have together. Short-break care takes some of the pressure of being a carer away and allows them to be a family. Unique therapy sessions help children to develop skills that can often surpass their parents and, even, doctors’ expectations. Our outreach programme means we can bring what makes Tŷ Hafan special into the home. Most of all, Tŷ Hafan provides a source of support.
But hearing the devastating news that your child is unlikely to reach adulthood is something no parent could prepare for and facing the prospect of needing the support of a children’s hospice must be truly overwhelming.
Ollie’s mum, Sophie, said: “Although I knew they were going to help us, I hated the thought of a hospice. Everyone hates that word, don’t they? But the moment Sean and I walked through the doors of Tŷ Hafan, we knew we couldn’t have been more wrong. It was nothing like you’d expect.”
Ollie was diagnosed with Pallister Killian syndrome – an incredibly rare chromosome abnormality that results in complex medical issues.
Sophie explained: “For the first 18 months of Ollie’s life, his development seemed reasonably normal but that soon slowed too and he started having more and more seizures. Time went on and Ollie continued to be very poorly, with constant, severe chest infections and other illnesses. He was awake all the time at night and I was at the end of my tether with sleepless nights and medical appointment after medical appointment. I really needed some help so I self-referred to Tŷ Hafan when Ollie was two years old and thankfully we were offered a place.
“The first time we took Ollie there for short break care, we both stayed overnight as I was worried about leaving him, but soon all my worries disappeared. I know now how much the nurses love him and take complete care of him. He’s so well looked after I’m happy to leave him there with them.”
“When we’re there, we just get time to relax, do whatever we want and just be a family – Sean, me and our daughter Summer, who’s seven. Summer loves it as much as her little brother does.
“When he’s at Tŷ Hafan, Ollie gets the one to one attention from his nurses that sometimes I just can’t give him at home, when there’s so much other stuff I have to do. When he’s in a playful mood – that’s just what he does. He plays. Sean’s mum says he’s like a different little boy when he’s at Tŷ Hafan.”
“It’s an absolutely amazing place. They look after Ollie but they look after us too. I was going through a really rough time recently, with a close family bereavement and illness. Tŷ Hafan knew things were bad for me so we were offered a short break there, so we could just step back from things. They were just so lovely, offering us practical help and support and a shoulder to cry on if we needed it. Tŷ Hafan is there for all of us.”
For more information on Hospice Care Week visit www.hospiceuk.org/support-us/campaigns/hospice-care-week or #HospiceCareWeek