Sammii is a Rainbow Trust Family Support Worker in the Reading Care team and shares her typical week with us.
Monday
I started my week by confirming appointments with families for the coming week. I went to the Royal Berkshire Hospital to meet a newly referred family. Their son, Owen, was born prematurely in November 2022 with multicystic dysplastic kidneys. I met his mum, Natalie, and twoyear-old sister Esmae. Natalie needs me to play with Esmae on the ward and out in the community so she can spend more time with Owen. She also has two older children: Neve, 13, and Evelyn, nine, that I also spend time with when they are visiting Owen with Natalie on the ward. Whilst at the hospital, another mum, Ariel, asked to see me to talk about her baby son, Finn, who is two months old. Finn was born prematurely and Ariel has another two boys at home, she doesn’t drive and has to get the bus every day to visit Finn. Rainbow Trust will be helping them with transport to hospital and support at home with her other sons.
In the afternoon I went to see a family in Wokingham. Nathan is 14 and is receiving treatment at University College London Hospital everyday for a rare type of cancer, metastatic Ewing sarcoma. Rainbow Trust provides transport for Nathan and his mum to and from hospital. I went to their house to support his siblings Mimi, 16, Jonas, 12 and Annie, 9. I helped Annie with her maths revision, did crafts with her and gave them dinner. I had a very long journey home that day as the M3 was shut!
Tuesday
I went to a house for families with very ill children within Southampton General Hospital to meet a new family. Baby Liam is four months old. He was born with Down’s syndrome, a congenital heart defect and a serious lung disorder. Liam has a fiveyear-old sister, Nicole, who is undergoing tests for ADHD. I will be supporting Nicole by picking her up from school and spending time with her. I will also support Liam in hospital, looking after and playing with him to give Mandy and Michael, his parents, a break and to spend some time with Nicole. I will also be looking for counselling support for Mandy, who is finding things difficult. Later that afternoon I went to Farnborough to meet one of our volunteers, Annabel. We went to visit Niran at his grandparents’ house and spent time with him playing and designing an escape plan just like ‘Home Alone’. Niran is 10; his sister Norah is five, has metatastic neuroblastoma cancer and is being treated at the Royal Marsden in London. Norah has been with her mum, Manju, in hospital for six weeks and Annabel will be supporting Niram.
Wednesday
As Norah was very sick and had a temperature during the weekend I contacted Manju to see how she was doing. She hadn’t slept more than two hours a night for 10 days as she feels unable to go to the respite accommodation to sleep because she is scared of leaving Norah. Manju needed support and somebody to talk to so I encouraged her to talk to me. I then spoke to Justin’s mum, Emily. Justin was born at 30 weeks, and had congenital myotonic dystrophy, meningitis and epilepsy. Justin was very unwell and life support was turned off last week, he was just three months old. I will provide phone support to Emily and she may need face to face bereavement support after the funeral. We will always wait for parents and families to tell us how they want us to support them going forward. In the afternoon I drove to Reading to meet Alicja’s family. Alicja is seven and recently rang the bell to acknowledge the end of her treatment for cancer. She had acute myeloid leukemia, a cancer of the blood and bone marrow and still has a tracheostomy and a nasal feeding tube. I met Kasper, Alicja’s 10-year-old brother, for the first time. Anna, their mum, feels that Kasper is angry with her for being in hospital so long with Alicja, and leaving him. I will have one-to-ones with Kasper to play and talk to get him to open up.
Thursday
I joined our Reading Care team meeting on a call with a young carers charity providing short weekend breaks to 5-12 year old siblings to see if we can refer some of the children we support to them. Following the meeting I met Hannah’s family. Hannah is five and has Lennox-Gastaut syndrome, a severe form of epilepsy, and multiple learning disabilities. She has two siblings, Nathan, seven, and Lauren, two, who I support and I attend hospital appointments with mum to support her too.
Friday
I joined the Southampton Care team meeting to gather more information about our planned mental health internal training. I caught up on my administration by updating all my family case notes, care plans and support activities on our database system. It was quite a busy week. Referrals to the Reading Care team are increasing and our caseload is growing which shows how much our support is needed in the area. The job of a Family Support Worker is very rewarding. Families trust us to support them with the difficulties and challenges encompassed with having a seriously ill child, I feel this is such a privilege. When I go home I enjoy walks and cuddles with my six month old puppy Frank.
