Sharon, Hope’s mum, talks about how Rainbow Trust supports her family in and out of hospital.
When Hope was a year old, she was diagnosed with severe asthma, severe angioedema which is a condition that can swell her body parts up to double the size. She also has Inflammatory Bowel Disease, seizures and coeliac disease – she often ends up in hospital and has been admitted over 200 times to date!
Supporting families in hospital
We’ve had Rainbow Trust’s support for five years and it’s a godsend, a lifeline for us. The emotional support is invaluable as well as the physical support with hospital appointments. There is often so much information to take in at Hope’s appointments that it’s great to have someone else there to listen and hear what the doctors are telling me. Some days we have such long waits in the hospital and Amanda stays with us which is truly a godsend. Some days we can be in for 10 hours so having the company makes a real difference.
Mandy also supports the rest of my family when Hope and I are in hospital. It’s a constant worry for them – will Hope be okay, how long with she be in for?
A moment of respite
Jim, my husband, has to consider taking time off work if Hope is in hospital for any length of time to take care of Hope’s siblings. Our two sons have learning difficulties and autism so worry more about their big sister as they don’t always fully understand what is going on. Mandy would sit with Hope at the hospital, so I could go home to see my sons – they still need me, and I wanted to be there for them.
When I am in hospital with Hope, Elise, my 11-year-old daughter, has to step into the role of a young carer to help Jim with the boys, which is really hard for her – she’s only 11. Mandy takes Elise out for playdates and chat times so that she can be the 11-year-old little girl that’s he should be.
Helping families cope
Without Rainbow Trust and Mandy, life would be so much more stressful. We can only rely on family and friends for some things but having someone who’s outside of the family who understands, someone I can offload to is so good for me. Even just being able to pick up the phone to someone who understands is a help.
“Amanda, a Rainbow Trust Family Support Worker, supports me and my family. She visits me in hospital and we have funny conversations, or she does arts and crafts with me. If I’m too tired to do that, we chat – Amanda makes it fun, she’s good company that isn’t my mum!” - Hope
