This week, we are taking part in Dying Matters Awareness Week (10th – 16th May), an annual campaign to get organisations, individuals and partners to talk openly about dying, death and bereavement. Colleagues from our Adult’s End of Life Specialist Service and Children’s Lifetime Team are sharing their expertise, experiences and their work in the community across Bristol, North Somerset and South Gloucestershire.
Acknowledging the importance of raising awareness, and the support of our clinical teams, one family has bravely shared their story of their ‘cheeky troublemaker’ Isla. Written in their own words, Isla’s story brings to light the involvement of the Children’s Lifetime Team; supporting the family physically and mentally.
This is Isla.
She was born on the 13th of October 2018 and referred to the Lifetime Community Palliative Care team in May 2019. She was known to her family as a cheeky trouble maker, who loved to be around people and stole the hearts of everybody she met.
Isla was born with microcephaly (the brain is small and does not grow properly), epilepsy and developmental delay.
Sarah (Isla’s mum) described how her Lifetime nurse helped them. She said: “Amy came into their lives and was always there at the end of the phone. Nothing was ever too much bother. She was always there for us as a family and it always felt like Isla was really being cared for”.
Isla had continuous oxygen at home and would often stop breathing. Isla also struggled with epilepsy and could have severe seizures up to six times a day.
Sarah talked about being “scared sometimes” but knew she could always speak to Amy, and she would always be at the end of the phone. She carried on saying: “The Lifetime Team liaised with other professionals, supporting us until Isla’s death at Charlton Farm Hospice in October 2020”.
The family had additional support from the Lifetime Psychology service who saw the family prior to Isla’s death and beyond. The team offer support for up to 18 months after a child has died.
Sarah spoke about the Counsellor Becky and how she spoke to her regularly.
“I didn’t know where to turn and I remember one day I had a really big meeting and had a call with her beforehand and felt I had the courage to say what I need to and stand up for what I believed in about Isla’s care”.
Ruby, Sarah’s daughter, felt like she often couldn’t share her fears with her family due to worries about them having more to deal with. As her counsellor, Becky could help manage her uncertainty. Ruby said:
“I was not in a good place. I don’t want to be dark but I might not be here today if it wasn’t for Becky. She gave me coping mechanisms and different techniques”.
Chloe, Isla’s oldest sister, also said about her Clinical Psychologists Laura. She said:
“It was someone to talk to that understood. She was amazing when I was struggling at work, helping me contact people and get support”.
The Lifetime team of nurses and psychologists help to support children and families within the community with life limiting (non-malignant) conditions across Bristol, North Somerset and South Gloucestershire. They focus on the family as a whole and look to support physical and mental wellbeing and health. Please feel free to contact the team if you feel you or anyone you know would benefit from their service roberth572.sg-host.com/nhsservices/services/lifetime/