Lack of co-ordination

Ruth Sharpe’s seven-year-old-daughter Celia* has Sturge-Weber syndrome. She has epilepsy, learning difficulties and motor development delay. She is also a wheelchair user and has a few words of identifiable speech.

Celia sees more than 20 different agencies, which include nine health consultants, five therapists and a learning difficulty paediatric team. Sharpe has collated her family’s experiences of services and has worked out that since Celia was born they have spent 4,942 hours on appointments and phone calls relating to her needs and she has driven 11,004 miles to appointments.

She says that the lack of co-ordination between services means that Celia has to attend numerous appointments, sometimes attending the same hospital twice a week because clinics are often run on different days, which disrupts her schooling. And Sharpe often finds herself acting as her daughter’s keyworker.

“I did not apply for the role of keyworker to my daughter and I often struggle to carry it out as I had no previous experience and it prevents me from being a mum to my children, a wife, a friend and a person in my own right,” she says.

* Names have been changed