Gill Gray has been a voice at the end of a phone line for many grateful parents, coping with hemiplegia in their family. Here she shares her experiences about her time as a voluntary helpliner.
How did you become involved in HemiHelp?
I joined HemiHelp as a member when my son was four and a half years old and he had been diagnosed with hemiplegia.
He's now 15 years old and HemiHelp has been such a help throughout his childhood. I became involved with the helpline when I went to the first HemiHelp Fun Day in Farnham a few years ago. HemiHelp persuaded me to offer my skills, experience and time to operate the helpline.
What does the Helpliner job involve?
Being a helpliner involves helping people with problems they have regarding the condition. I have spoken to hundreds of parents, grandparents, carers and teachers who need advice and support.
I help with everything from advising on benefit forms and equipment, such as splints etc., to schooling and behavioural problems. I'm there as someone people can chat to, who will listen and has an understanding of the problems they are experiencing.
The one topic which seems to keep on coming up is how ill-informed the education system is regarding the condition and the difficulties associated with it. Some parents are, sadly, at their wits' end, having experienced the failure of their children's schools to recognise and address important issues around hemiplegia. In my experience, to raise awareness of hemiplegia in schools there is a need for more training and workshops for teachers.
HemiHelp has really helped me to better understand hemiplegia, and its unique problems, through having listened and spoken to so many people. Every child is different and I'm glad to help by being here.
Why do you continue to support HemiHelp?
I continue to support HemiHelp as a helpliner because I can remember the times when I needed help with my own son and I want to give help and comfort to others in the same situation.