"Care has been a Saga when usual carer is away"

I am a wheelchair user from Leyton in East London and have been in receipt of a social care package for some years now. My carer is brilliant, I mean really great – attentive, caring, and they do so much for me. They help me cook my meals and help support me with eating. Not feeding – as this makes me sound like a goat or something! My carer even brings me shopping when I need it –and although this is included as part of my assessed needs – I am still blown away by the fact they can help me out when I need things like bread and milk.

I mean I don’t think they go too much out of their road but they are very considerate that way. The one thing I don’t quite understand is that when my carer goes on holiday the agency find it impossible to get a replacement – or when they do – the temp carer is late or sometimes I just don’t get anyone turning up to support me.

For me I am OK ‘cause I can call one of my mates or call someone from my family. My pals also tell me I don’t complain enough and are always telling me to ask for more support. But it is not in my nature really, but I am aware that there are people out there who don’t have a network of support like I have and they are reliant on their carers to keep them independent.

I couldn't live on my own and stay independent without my carer but there must be hundreds if not thousands of disabled people in London who don’t have this support and their lives must be a nightmare sometimes.

I am independent and live on my own in a my amazing ground floor flat provided by Waltham Forest Council but I can’t go shopping for food for myself and can’t get washed or dressed by myself or cook for myself. If I don’t get a carer I have to fend for myself which isn’t easy. If I don’t get a carer when my usual carer s on holiday and the temp care doesn’t show – I don’t get to eat and this has happened to me on several occasions.

Since Allied took over as the agency responsible for my care they have helped me maintain my independence but they haven’t quite answered the question about what happens when my usual brilliant carer/s are on holiday. I am more than willing to help chat about what we can do together to sort out the conundrum? I think I have got some pretty big care needs – and with quite significant cerebral palsy I do find it harder now that I am getting older. More for the sake of everyone and not just me I would like Allied and my council social worker help show what care should look like.