Case study transcript - Gillian Hill

Caroline Hill
Gilian Hill's mother

"My name is Caroline and I am Gillian’s mum, Gillian is 26 so I have been looking after her with her dad all these years at home. Gillian was born in 1982 and after, what I thought was, a natural birth, Gillian ended up in intensive care. Four months later we were told that Gillian had cerebral palsy, what actually happened was this led onto the changes and deterioration in her health over her life. For Gillian it meant that she had; she was registered blind, she couldn’t walk, she uses a wheelchair to get around. Gillian doesn’t have speech although she does talk facially; she’s got her expressions.

Over the last 9 years Gillian has had to have a feeding tube. We did not have any carers coming in to help look after Gillian because we had been doing it all of Gillians life, however we realised that to enable us to get some work or do other social activities it would be more beneficial for us to have carers come into our house. A social worker came with one of the managers, the care managers, to assess Gillians need and the level of care and support she’d need, and at that time it was deemed that the level of care that she needed, they couldn’t provide and that is when it was decided that at that time, Gillian could have the direct payment scheme and we use that to enable Gillian to have a good quality of life.

What we do is we actually use Gillians funding for some personal and some social care and that helps Gillian, for example that would be to help Gillian get ready in the morning, when she’s well enough to go to day centre but also she used to help her, for example, in the evenings when the weathers good and Gillians come in from her day service and if she is quite happy, comfortable in her chair, she would go out for a walk with one or two of her carers. The other thing that we actually use the money for is for Gillian to have some complimentary therapy and that actually supports Gillian quite well but I would say that the bulk of the money goes on Gillians personal carer. We go through a care agency for Gillians carers and we have a team of people who come in to help look after Gillian, we know who is coming and we know what days of the week they are coming in, whether it is morning or evening or a Saturday morning and we’ve built up a relationship so we feel we’ve got quite a lot of control having this support. And also we have a really good working relationship with the care agency we use. So it does actually work out quite well.

For myself and Gillians dad it means that we can actually get time away from caring, which before we had direct payment or Self Directed Support we were actually looking after Gillian 24/7. And now we have two carers come in, in the evening so we could both go out if we wanted to or sit down and have a meal together without getting interrupted, cook a meal without getting interrupted, we can actually sit-in and watch a DVD if we want to without getting interrupted. So that is really positive for us, to have an opportunity to have time away from caring, and it is also gives Gillian an opportunity to get time away from us.

We benefit quite a lot from Self Directed Support as a family that really helps Gillian and it really helps us. I think there would be a lot of people who would benefit from it but for us it works really really well. I think that it needs to be looked at an individual basis. I don’t think it is something that I would say you should have to have."