Ty Hafan

#family friday

taking tŷ hafan into the community

Sara Jones nurse appeal
Sara Jones has worked in paediatric palliative care for many years and is now Tŷ Hafan’s first community nurse. She tells us all about the project and how Tŷ Hafan plans to bring palliative care to the families of Powys..

I began my paediatric nursing career 25 years ago and joined Tŷ Hafan as a shift leader 19 years ago. I came here to make a difference to the families. What they’re going through is so difficult and while we can’t do anything to change their situation, we can help to make it easier for them. For many families with life-limited children, the parents have to become carers overnight. They have to learn how to administer medication, use medical equipment and manage their child’s symptoms. This is a vast undertaking for people that may have had no medical experience prior to this and, unsurprisingly, a lot of the families feel overwhelmed.

I originally left Tŷ Hafan to travel the world then to pursue a career in community nursing at Aneurin Bevan Health Board. Eight years ago, I chose to return to Tŷ Hafan as a Palliative Care Nurse and pursued a post-graduate degree in Community Nursing. It was my degree, my community experience and my passion for community nursing that makes me so proud to say that I’m Tŷ Hafan’s very first community nurse!

Our joint project with Powys Teaching Health Board (PTHB) aims to step up the profile and raise awareness of children’s palliative care services to the people of Powys. Due to the ruralism of the area and the lack of resources, families may not be accessing the care and support they need so we want to see how best to deliver paediatric palliative care to them. Working with PTHB, our ultimate aim is to collectively introduce a model of care to offer families a choice of place of death at home, home being a realistic location and the resource prudent.

Working alongside a Powys Children Community Nurse, I’ll be acting as a point of contact for families and professionals in the south of Powys and seeking out new referrals to children’s palliative care. I’ll be supporting PTHB in developing a specialist Paediatric Palliative Care Nurse role, facilitating access to Tŷ Hafan hospice and jointly working towards building a model of care for children’s palliative care in Powys.

My new role means I’ll be based in Powys for two days a week. I’ll be visiting children in their own homes and helping them with their physical needs, pain management and symptom control while supporting the families with their emotional, social and other needs. I’ll be a point of contact for both the families and the healthcare professionals of Powys to provide advice and help to those who need it.

It’s still early days for the project so I’m just reviewing all the needs of the children ,assessing how much involvement the families would feel comfortable with and scoping for a service. I’m also meeting with various health care professionals, nurses and other health boards in order to get to a point where we’re all ready to progress and start making contact with the families.

“I’m so proud and excited to be the first Tŷ Hafan community Nurse. I can’t thank Powys community children’s nurse team enough for the warm welcome I’ve received and I hope to be the first of many other Tŷ Hafan community nurses in other health board areas.”
It costs us £1 million every year to fund our nurses and we can’t do this without our amazing supporters, so thank you for everything you do for Tŷ Hafan.

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Our nurses are the life-blood of Tŷ Hafan. Please help them be ready for the next generation of children