Date published: 30 March 2022 by Amber Hemming

Georgia shares what a typical week is like working as a Family Support Worker at Rainbow Trust.

Monday

I was in Bournemouth today visiting Tony and his family. Tony is 14 years old and has Sanfilippo Syndrome, a progressive disorder which means that he has very little mobility, is non-verbal and his mum is his full time carer. I collected Tony’s sister Amelia, nine, from school and walked her home, we chatted about how her day was and all the amazing things she has been learning about.

Once home, I was able to talk with their mum about how the whole family had been since my last visit. Today’s session with Amelia was more of a sensory experience, where we made some slime together – which she really enjoyed – and then we played with her Lego.

Sibling support is a really important part of our service. It can play a vital preventative role, helping children to learn coping mechanisms, find an outlet for their strong feelings and worries, build a support network – as well as having some much needed fun. My visits with Amelia are very much play and craft-based and allow her to talk openly to me about any worries that she may be feeling regarding school or her brother Tony, in a safe space while doing the things that she loves.

Tuesday

Today I was invited to a school in Southampton that Teddy, five, attends to be presented with a cheque. The school had raised money for Rainbow Trust over Christmas and wanted to donate it to a charity that supports Teddy and his family through his cancer diagnosis. I met the head teacher and spoke about what we could do to work together to continue to support the family.

Afterwards, I collected Teddy and drove him home from school. He told me all about his day, and how excited he was that he got to see me today. At home, we played lots of board games together and his mum and dad joined us for some of them, which he seemed to really enjoy. I spent time with his mum, and she showed me some photos and videos of Teddy and his brother that she had captured over the last week which made her beam with pride.

Wednesday

Neonatal care has been especially difficult during the pandemic for parents of premature or seriously ill babies. Visiting can be complicated by the distance that parents may need to travel to see a seriously ill baby. Short and infrequent visits can create a barrier to caring and bonding activities which can assist in a baby’s development.

We support many parents with seriously ill babies, and today I drove to Salisbury to collect a mum from her home and took her to Princess Anne Hospital in Southampton so that she could see her baby, who was born prematurely at 27 weeks.

Currently she can only see her baby twice a week, as travelling to and from the hospital is difficult without support. On the way there I provided some emotional support, I listened to her talk through her concerns as well as the positives surrounding her baby and home life. Once I had dropped her off, it allowed her to have a few much-needed hours with her baby. I then collected her from the hospital and drove her back home to Salisbury, where we chatted more about her baby’s progress.

Thursday

I drove to Fleet this morning to visit Ben, who is 12 years old and has been diagnosed with a serious heart condition. His mum asked me if I could take him to watch the new Spider Man movie so that he could have some fun whilst she got on with some jobs around the house. We spent a few hours at the cinema, then we walked around town to browse in some shops. We chatted about all the new Marvel films that are coming out soon. On the drive home Ben said that he really enjoyed spending time with me today and that he cannot wait for my next visit. His mum was very appreciative and said that it allowed her to have some time to herself to do things that she wouldn’t have been able to do while looking after Ben.

Friday

On Fridays we have a team meeting in our Southampton office, where we all come together and share any latest information within the team and Rainbow Trust. We also get the opportunity to share how our week has been, talk about the families that we have been able to support during that week and exchange ideas on how to improve or address anything that may seem difficult.

You can help to make every precious moment count for families with a seriously or terminally ill child by sponsoring a Family Support Worker like Georgia today.

*names have been changed.