Guest post by Rebecca, who has ME and is a wheelchair user. She has lost her entitlement to social care, and now gets no support at all. Here she explains how it has affected her life.
Long hours stretch out in front of me. There’s nothing to fill my time. I cannot get out of the house. I may go many days without seeing anyone.
It’s a struggle even to have a drink; I certainly can’t get to the loo on time. I can only eat things which come straight from a packet.
If I ask for help to do something that isn’t directly about caring for my physical needs, I’m told it’s not possible. No one asks if I’m happy, or if I’d like a social life.
This is the situation I have faced ever since my care package was taken from me.
Losing my social care
I used to receive an hour of care a day where I’d get help with a hot meal, basic housework and a bath.
But when I was reassessed, this care was removed completely. One of the reasons I was given for this was that I was ‘able to use a computer’.
I was told: ‘If we gave help to everyone who just needed a bit of help with their housework, we’d have to give it to everyone.’
But it’s a lot more than just housework. Without social care, I lose the ability to do the things which make me happy, and end up spending all my energy on survival.
How it affects me
I have volunteer carers now who come in to help me when they aren’t working. I get maybe one bath a week, and hot meals four days out of seven.
I often have to sleep in my clothes. I don’t eat properly, which means my medications are disrupted as some must be taken with food.
I was prescribed hydrotherapy about 10 years ago but I have never yet been able to attend, as I have no carer to take me, push my wheelchair, help me undress and dress again.
I’m forced to wipe myself down with baby wipes rather than have a bath, because it’s not safe to bathe myself.
I choose to be happy
I didn’t choose this life, but I still choose to be happy. My cooking and loving and care-giving (which once defined me as a proud and happy wife and mother) have had to be set aside.
But my joys are of lying in my bed looking out at the riot of summer turning to autumn in the countryside I love.
My joys are my warm dog snuggled against me under the blanket, or the total trust and love of the parrot I adopted climbing on my arm, asking for his head to be scratched.
It is not an easy life-lesson to learn that no matter what happens, I can still choose to be happy. I just need more direct care, more stability, less financial uncertainty and a lot less stress.
We’re calling on the government to provide more social care funding for people like Rebecca. Find out more, or tweet us using the hashtag #carecrisis.