Patrick supported by Shooting Star

Patrick spent the first seven months of his life in hospital, until he was referred to Shooting Star Children’s Hospices during the summer for three weeks of step-down care to help his parents make the transition from hospital to caring for him at home.

Patrick was born was a genetic condition, TUBB3 syndrome, which means he has many medical and care needs and requires 24-hour supervision. The risk of Covid-19 meant accelerating plans for Patrick to finally go home from hospital, which was of course welcome news, but also overwhelming for his parents who were to become his main caregivers alongside a team of home carers. So Patrick spent time at Christopher’s, the charity’s Guildford based hospice, to help his parents feel confident using medical equipment and administering his medication before taking him home.

Whilst staying at the hospice, Patrick and his family enjoyed a day at the beach, lockdown style, with a fun outdoor sensory display. Patrick’s mum said, “It’s so nice to be in an environment that is not medical. We’d never taken Patrick outside until he came to the hospice and now, he is in the garden for much of the day. The care team made us feel so welcome and at home, we made so many different memories. In the hospital, you have a security blanket around you, if we were going straight home, we’d of felt overwhelmed. The opportunity has been brilliant to help us become independent with Patrick’s care and yet we know we have the support of the care team if anything is needed. We’re so grateful to the hospice, it was the perfect transition between hospital and home.”

Step-down care helps support families who have spent a long time in hospital and come to the hospice to prepare for a safe discharge to their own homes. Shooting Star Children’s Hospices support them with gaining confidence in new medication regimes and using medical equipment that may be new to them so that their child can go home sooner rather than stay in hospital.