A young girl living with multiple complex care conditions
Skye* is a young girl living with multiple complex care conditions, her primary diagnosis being TECPR2 syndrome, an ultra‑rare, progressive neurodevelopmental and neurodegenerative disorder. It’s so rare that only 20 people have been diagnosed with this condition in the UK.
TECPR2 leads to a range of challenges including developmental delay, intellectual disability, hypotonia, spasticity, sensory autonomic neuropathy, severe central apnea, and difficulties with mobility and communication.
Skye also has Truman Syndrome, a psychological condition where an individual believes their life is being staged and monitored. She experiences severe separation anxiety and significant violent meltdowns (in her mum’s words). In addition, she has bladder and bowel problems and a learning disability that profoundly affects her daily functioning and communication.
Her mum Caren* is her daughter’s main carer, but she is supported by Caremark Rotherham and Sheffield.
A bespoke care package designed to ensure safety
Skye requires intensive, two‑to‑one support every day from 8am to 10pm, due to the unpredictability and severity of her meltdowns. These meltdowns can last all day and sometimes result in property destruction or physical aggression.
Skye was previously supported by another provider, but due complexity of her needs, Caren chose to switch to Caremark. She was seeking a provider capable of offering specialised behavioural support with the appropriate training and policies in place.
Our bespoke care package is designed to ensure the safety of both Skye and Caren, with our Support Workers present throughout the day. They help manage meltdowns, assist with daily routines, and accompany Willow and her mother in the community. For example, during trips such as swimming outings, staff ensure safety during potentially challenging moments.
The role of the Support Workers is assisting and not replacing
Caren, understandably, is keen to remain central to Skye’s care. She sees the role of our dedicated Support Workers as assisting alongside her, rather than replacing her role.
Caren says: “I set my bar quite high as a mum and it’s an ongoing learning process for everyone, but I am happy with the support we receive from Caremark.
“Some days I wake up and think I don’t want these people here because I value privacy and they are with us all day, but then I know they are here to keep us all safe.
“I also get great support from Kirsty and Diane in the office. They are always just a phone call away and offer me lots of personal support which I value.”
*names changed to protect identities
About Caremark Rotherham & Sheffield
If your loved one, or someone you advocate for, would benefit from our specialist complex care services in Rotherham and Sheffield please get in touch with us today.