Adapting our services
Right now, we only reach 1 in 10 children in Wales with a life-shortening condition. Our ambition is that when a child’s life will be short, no family should have to live it on their own.
To make this ambition a reality and reach every family in Wales who needs us, we must re-align our services. Our goal is that every family whose child’s life will be short will have access to the right care, at the right time, in the right place and delivered by the right person.
This year, we’ve been working hard to further develop our care and community services so that we can reach more families.
We’ve introduced our Family Support Volunteer project to give families practical support in their homes, and we’ve introduced the role of Children’s Rights and Education Practitioner so that children can be supported to engage in education that meets their complex medical needs and to advocate the importance of their rights enshrined in the UNCRC.
We are trying to make our specialist resources more available to families by encouraging them to use the hospice-based rooms and activities like the hydrotherapy pool, sensory room and inclusive playground on a drop-in basis, and by taking our specialist teams and equipment to community venues so families can access support closer to home.
We have been developing our cultural competency skills by meeting with black and ethnic minority families to find out how we can better meet their needs. We are also working with Swansea University on a Marie Curie funded project to provide a suite of training for practitioners to increase cultural sensitivity and competence.
As well as delivering and developing our expert end-of-life care and symptom management services, we continue to focus on reaching more families in their homes and local communities.
It’s early days and there is still much more work to do. We will keep you up to date as we further develop our services for children and families.
Dreams come true at Comic Con!
The Tŷ Hafan Youth Board was approached to see if they would like their very own stall at Comic Con in Barry this year. Of course, this was a dream come true for lots of the young people who are big fans of this ever-popular convention! The young people who went along had a fantastic time – and Emily, who was dressed as Harley Quinn, even took home third prize for her costume!
Summer service of remembrance
This summer, we held our annual summer service of remembrance. Over 200 people came, including newly bereaved families and families whose children died many years ago. The newly bereaved families were given their pebble engraved with their child’s name and the whole service was set off perfectly with beautiful music from Diane, our Music Therapist, and Heather, our Senior Play Practitioner. There were tears, laughs and lots of cwtches, and we’re proud that Tŷ Hafan remains a space for families to reflect and remember their children, even decades on.
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