Guest post by Kirsty, who lives alone and needs support to get up, wash and dress, and leave the house. She uses a wheelchair. Her social care was cut by 50 hours a week, leaving her in huge difficulties. She has asked for her name to be changed to protect her identity.
I’ve been wearing these clothes for two days now. I haven’t had a shower. My hair isn’t tied back and I can’t do it myself. I feel awful. If I can’t find care tomorrow, that will be my third day in the same clothes.
For over 10 years, I was entitled to nearly 80 hours a week of care for getting up, showered and dressed, going about my daily life, and doing social activities. I also had an on-call service at night in case I needed the toilet.
Then I received a letter out of the blue telling me that I had five days to get some incontinence pads to wear at night, because my night care was being cut.
I am not incontinent and I have full sensation, so I’d be lying there from 10 o’clock at night until 8 o’clock in the morning.
I challenged the decision and won, but that triggered a review of my whole care package. As a result, my daytime care was cut to 23.5 hours a week – from 11 hours a day down to three and a half hours.
It has affected every single area of my life. Before, I was independent – not in the sense that I did everything for myself, but that I had choice and control over my life. Now I feel like the structure of my life has completely broken down.
I can’t leave the house on my own, so I am stuck inside most of the time. I can’t go to the bank, or to the shops without support. I live slap bang in the town centre, but if there’s no one here to help me I might as well be on the moon.
I get an hour and a half care in the morning, an hour for tea and an hour at night, and I’m always under pressure because I cannot complete the things I need to do in that time. I have been threatened with being left naked in the shower by agency staff because my time was up.
I now employ my own support worker, but her time is restricted – she has another job, and travelling to me three times a day wouldn’t be worth her while. We often have to combine my three calls into one, but then I’m left alone all the rest of the day.
If my support worker is away or off sick, I’m expected to cover care myself using agencies. There is often no one available, and then I’m left completely alone.
At the moment I rely a lot on a close friend, but I shouldn’t have to put them in that position. I don’t ask them shower or dress me, but I’m still terrified that the pressure will put strain on our relationship.
The social things I used to do are impossible, unless a friend is prepared to help me – for example, they’d have to help me get into bed, still wearing my clothes.
I do worry about my mental health. Not being able to get out of the house, or go down the road to visit a friend, or even to the shop or to get some fresh air, is horrible.
I find it really shocking and distressing that even the basics aren’t in place for me – and there must be thousands in my position. I’m being made to feel like it’s wrong to expect to be showered and dressed every day. All I want is to be able to lead a normal life.
We’re asking the government to fund better social care for people like Kirsty. Read more on our Social Care webpage.
The photo in this post is posed by a model.