"In the morning, I picked up five-year-old Amelia and her granny, Lizzy, from their home. Amelia was diagnosed with a neurological disorder last September. She needed brain surgery and spent a month in Liverpool’s Alder Hey hospital - it was a frightening and uncertain time for her family.
I visited her after surgery and sat with her to give her dad, Paul, and Lizzy some respite. The difference this respite made was huge, especially for Lizzy who was exhausted. Just having the chance to sleep and shower gave her a refresh and time to begin to process everything.
Today I drove them to a hospital appointment in Lancaster. Appointments are already draining and stressful so not having to worry about how they are going to get there, parking, and traffic was a huge weight off Lizzy’s shoulders.
These appointments are also usually unsettling for Amelia due to how busy and clinical hospitals are so I brought along some sensory toys to keep her occupied and so Lizzy could focus on what the doctors were saying.
To give the family time to decompress afterwards, I took them to a soft play where Amelia had the chance to have some fun. While she played, Lizzy and I took some time out to talk about the appointment.
For families, just having someone to talk to about their thoughts and be with them at appointments is so important. They are trying to manage their own emotions and the needs of their child while everything is coming at them: updates on test results, changes to treatment plans, new medical terminology, and future procedures to prepare for.
After dropping Amelia and Lizzy at home, I picked up two-year-old Rio and his mum Jahmilla. Rio, who has chronic lung disease, was born 24 weeks early and spent the first eight months of his life in Alston Community Hospital. He is on oxygen and has a nasogastric tube fitted for feeding.
Jahmilla cannot drive and, due to Rio’s needs and oxygen tank, she struggles to get out. They often have to take expensive taxis. I support by taking them out to do food shopping or on trips to sensory rooms, which Rio absolutely loves.
He is regularly in hospital, seeing medical professionals, so these trips give him a chance to be in a non-clinical and less scary environment. Having the non-medical side of support that Rainbow Trust provides is important, it gives him some fun and helps his development.
Today’s trip out was to the multisensory Creative Space Centre in Preston where we were holding an event for families we support. Rio was so excited - he especially loved the bubble tube. The event gave parents of seriously ill children, like Jahmilla, time to talk to others in similar situations. It also provided them with respite and a chance to relax as they know their children are in a safe, supportive environment.
On the way home we stopped at a shop so that Jahmilla could pick up some essential food items. While she was shopping, I entertained Rio, giving her time to focus on what she was doing without worrying about Rio and the complexities of moving his oxygen tank.
I ended my day with a visit to Ruby’s family after receiving a text from her mum, Nikki, who thought it would be beneficial for Ruby and her sisters to have some support. Ruby is four and has, a rare condition that affects bone marrow and the pancreas.
The family is getting ready to go on their first holiday since Ruby’s diagnosis. Nikki is very worried about going as, due to her illness, Ruby falls ill easily and can end up in hospital. I brought along some holiday themed arts and crafts for Ruby and her sisters and provided some emotional support for Nikki. We discussed how she was feeling and a plan of action for what to do if Ruby fell ill.
After that I headed home for the evening to catch up on my admin from the day.
Every day is so different in this job due to the one-to one nature of the support we provide for families. It is very specific support that is tailored to them and their needs. It is very unique.”
