2022: STAYING CLOSE, LISTENING AND EVOLVING

Some parents liken having a life-limited child to being on a permanent rollercoaster. What seems like a typical day can suddenly become a terrifying bluelight ambulance journey to the hospital. Julia’s House has to be responsive to these changing needs.

We increased the one-to-one support offered by our dedicated Family Support and Sibling Workers in 2022. This support, and the assurance of having a named nurse as a first point of contact, ensured we could keep close to our families during the most challenging times.

Nearly 120 children received expert care at home or in their local community, with over 2,000 sessions provided. Our sibling workers supported 94 brothers and sisters, delivering almost 600 one-to-one sessions.

Following the launch of a pilot service in 2021, the charity’s counselling service saw increased demand as families both before and after bereavement needed support in coping with the many pressures in their lives. Our health and well-being team expanded as we continued to provide the services the families tell us they need.

Julia’s House contributes £1,000 towards each child’s funeral costs and we provide regular bereavement support to families for up to five years. In 2022, our Remembering Day annual gatherings resumed face-to-face, helping to mark each child’s life who has died.

Family Support Services In Demand

Our family support services were increasingly in demand. We did all we could to ensure families were able to access the support they were entitled to – helping them to identify relevant benefits, completing the mountain of paperwork often required and responding to queries. We signposted and referred families to expert advisory services and our own counselling service.

• Helped exhausted parents fill out benefits forms, which can be 70 pages long, to get the Government support they’re entitled to; for emergency transport to help when their child goes into a hospital many miles from home, or a hoist to help them lift their child safely and securely.

• Researched and applied to private and charitable sources of emergency grants for families.

• Connected families to food banks or other community food resources; collected food for families too busy or worried about stigma.

• Made sure children who spent the day with us at the hospice or out with their sibling worker had a

16,000+ hours of expert care provided hot meal before they went home.

• Fully charged children’s electric wheelchairs and any monitors before they went home.

• Sourced winter coats from our shops for families who couldn’t afford to replace those their children had outgrown.

• Provided a Christmas food hamper for families and Christmas presents for every child, including brothers and sisters, to reduce the pressure on families.

This was the UK in 2022. This will continue to be the UK in 2023.