Date published: 05 October 2021 by Amber Hemming

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

Monday

Today was an office day. I had a team meeting with colleagues, did some much needed admin, contacted families to organise visits or to have updates and planned the diary for the week. I also met with two new Family Support Workers from the North West team, who are in the process of learning how we all work and getting training so we welcomed them in our team meeting.

Tuesday

I visited Sara* at James Cook Hospital in Middlesbrough. Sara is six months old and has been in hospital since birth because she was born with heart problems and chronic lung disease. Unfortunately, Sara does not have regular contact with her family because her parents struggle to spend the time they would like with her due to work and looking after her siblings. Sara needs her play, physical, sensory and developmental needs stimulated so I played and read stories to her. I also completed her personal care.

After that I went to the Great North Children’s Hospital in Newcastle to support Simon. He is eight months old and has been in hospital since birth with bowel complications.

Simon’s parents are not able to visit daily due to distance and having to look after his other siblings. I played, sang and did some games to stimulate and entertain him and held him while he slept.

During this visit I also completed a volunteer’s supervision. Some of our volunteers help us in hospitals by carrying out activities with ill children or their siblings while they wait for treatment, giving parents respite and also freeing time so I can be with other families in the wards.

Once home I checked my emails and texts, responded to families and updated the database.

Wednesday

Today I completed four-year-old Terry’s family plan review and then took him to soft play. Terry has acute lymphoblastic leukaemia and taking him out enables his parents to spend one-to-one time with his brother Theo. After that I saw Josh’s family and completed their plan review. Then I took Josh, who is five years old and also has leukaemia, to soft play.

Family plan reviews are usually done every six months and are an important conversation with parents to check if changes are needed and to ensure that the support they are getting is helping them.

Once home I entered the support plans and updated a risk assessment on the database.

Thursday

I attended a wellbeing conference call with other colleagues. The internal wellbeing programme focuses on the four themes of Body, Team, Work and Mind and it is designed to assist all employees with our wellbeing.

Then I drove to Great North Children’s Hospital to visit two-year-old Clare, who has leukaemia, to give her parents a break. I spent time playing with her to assist with her development. I also completed Clare’s support plan review and updated her risk assessment.

I called some families to catch up and organise some visits and then I picked up Kane from school and took him to the park and for some ice cream. Kane’s sister suffers from non-Hodgkin lymphoma and Kane has been feeling isolated and lonely because his parents spend long periods at the hospital with his sister. I provide emotional support to Kane to help with his loneliness and he really enjoyed his one-to-one time today.

Friday

I completed some e-learning. We all have mandatory training to do - like health and safety and manual handling. Afterwards I ran a drop-in group for ill children and siblings during clinic. I use arts and crafts to distract the children from treatment, stop them getting bored, emotional support and give their parents some respite.

I also supported Hazel at the same hospital, in a bubble room, which has controlled air flow to reduce the risk of infection or contamination. Hazel is three and had a bone marrow transplant due to an immunodeficiency condition. Because she is in isolation and can only see mum she needs social interaction and stimulus. I also supported Hazel’s mum, who’s caring for Hazel in the unit, giving her respite and supporting her to cope with the day to day living on the unit.

Then I drove home, while thinking about the many different needs of all the families I’m helping and how varied my week can be.

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 Shelly today.

*names have been changed.