One sibling who is leading the charge and encouraging others to get involved with the Survey is 16 year old Hannah.
Hannah’s brother, Josh, has been a patient at GOSH for nearly 10 years. Hannah was 7 when he first started coming to GOSH and she felt confused. Feeling like she wanted to be more involved in the hospital, which has been such a big part of her family’s life, in 2017 she became a member of our Young People’s Forum (YPF). She has also been an active fundraiser for GOSH Charity.
Throughout her involvement, Hannah has provided an invaluable insight into what it is like to be the sibling of a patient treated at GOSH, from talking about the challenges at Trust board meetings, to making recommendations so that we could try to improve the experiences of other siblings. Hannah is now keen that other brothers and sisters of GOSH patients get involved.
I know from my experience that being a sibling of a patient at GOSH isn’t always easy. Our lives have been changed thanks to GOSH. The journey has been hard but the hospital has helped us all to gain clarity. I would like to help other siblings of patients to be able to be a part, however big or small, of their sibling’s care but with the best support available throughout their whole journey. Looking back, I wish I would have had the opportunity to have more involvement from a younger age and therefore feel extremely passionately that siblings of patients now and in the future should have their voices heard. With your input, we can better the experience for siblings and ensure that they can access the best support."
Hannah has been consulting with siblings for some time now, trying to understand what others feel they need in the area of support. In 2019, she visited GOSH during the October Half Term to talk to siblings and families around the hospital, and discovered that many felt that they needed more support. An additional discussion with other YPF siblings yielded similar results. Some felt they were overlooked while others struggled with painful memories from experiences that brought their sibling to GOSH and most felt that their schools lacked an awareness of how their brother or sister’s health condition impacted their general wellbeing.
Help shape the future for siblings
Our patient experience team lead, Claire Williams, adds: “We need to better understand how the siblings of patients feel, because they too are living through the challenges of having a seriously ill family member.
“Our hope is that, when restrictions ease and brothers and sisters can come back to GOSH, we have used this time to develop improvements for them. Our first step is to understand what siblings go through when a family member is a patient at GOSH – whether they come for outpatient appointments or longer inpatient stays. We also want to hear their ideas about what we could do to make things better in the future. The best way to do that is to complete the survey and let us know what matters to you.”
Although the ongoing situation means siblings can't be at GOSH right now, we very much care about their experiences and thoughts, and we want to hear from as many of them as possible.
The Sibling Survey will be live from 20th July until the end of August 2020.