“I can’t get out of bed, or get dressed, most days”

New research released by Scope today reveals the extent of the social care crisis for disabled people who need support to do the basic things in life. Here are three of their stories.

Robert, 63, from Warwickshire, has very restricted mobility following an accident 15 years ago. He isn’t able to get out of bed, get dressed or prepare food without support, and is in a lot of pain. He’s currently entitled to 14 hours support a week.

Robert, a disabled man in his 60s, in bed.

In an ideal world, my support worker would come for two hours a day, and he would shower me and change my bedding, vacuum my room and stuff. But if you have a week like I had last week, where I had three hospital appointments, all my social care is used up on getting me to hospital. There’s no time left for everyday care.

If I’m on my own, I don’t have anything to eat or drink all day. So life is miserable, to be honest.

I’m lucky that my wife lives with me, but she shouldn’t have to do everything for me, and without her there is no way I could live independently.

I rang up my local authority and told them I was under pressure – I couldn’t afford the water rates, and I was being taken to court. They sent me a letter telling me to get food from a food bank 17 miles away. I can’t get there, and I would rather starve myself to death than go to a food bank.

I can’t get to see my grandchildren. I’ve never visited my son’s house. I honestly can’t remember the last time I did something socially, out of the house – we’re talking years ago.

“I have to sleep in my wheelchair, and I am malnourished”

Rachel, 42, from Southampton, uses a power wheelchair and is in constant pain. Her mobility is very restricted, and some days she isn’t able to get out of bed.

Since 2010, I have had two thirds of my care package cut, from two and a half hours a day down to 45 minutes.

My social worker just said ‘We can’t do it any more, we have to make cutbacks’, and then my care was cut almost instantly. It just feels like they washed their hands of me.

On my worst days I can’t get undressed properly in the evenings, or transfer from my power wheelchair into bed, so I have to sleep in my chair, in my clothes. I had to fight to get a care call so I can shower once a day. My local authority suggested that three days a week would be enough.

It’s horrible. When my arms aren’t working properly, I can’t prepare meals, so I end up just having bread. Before, I would have had my meal prepared. The last time I was in hospital, they told me I was malnourished.

“I’m getting deeper into debt just paying for basic care”

Jo, 47, from Cambridgeshire, has spinal muscular atrophy. She arranges her own care, employing support workers using direct payments.

I’ve got very weak muscles all over, I use an electric wheelchair all day, and I need support doing most things really – washing, getting dressed, cutting up food, moving my arms about to help me do things.

I need to have carers come in three times a day, and I technically get enough funding for 28 hours care a week. But the rate we get hasn’t gone up for 15 years, and there is a shortfall in how much that 28 hours actually costs when all the extras come in – holiday pay, recruitment, pension contributions.Portrait of Jo, a disabled woman, sitting in her wheelchair

You end up cutting corners with the very basic things. I might end up not washing my hair, because it means I’d be keeping the carer here too long. It might take me three quarters of an hour to have a shower, but social services say ‘Well, actually you can do that in 15 minutes.’

We are actually in debt. I’ve had to take out personal loans. This has been going on a good five years. We never clear it, it increases slowly year by year, and it just feels like it will never end.

If I cut back on the amount of care I get, that would mean staying in bed in the morning, or not going to bed at night. It really is the very basics.

We’re calling on the Government to urgently address the social care funding crisis when future spending plans are announced by the Chancellor on 25 November.

Find out more on our website.

10 thoughts on ““I can’t get out of bed, or get dressed, most days””

  1. I’wiil done the same of yesterday. First I studied it ans after I wrote something. Now. The desenvolupament of United Kingdom is very knowledge for all , is possible that is didderent, the Baltics, Frenchs, USA, Commonworld, Europe. In the rest of the whole word exist a great difference between wemen and man’s. If is the man who lose, well, he have an social status, social cobertures. The wemen in general is more strength than. When lose the women in the world ” in desenvolupement, directly is a desaster. Now I need lye by the pain but at middle day I wrote sure and I learn too.

  2. I’m 23 and still live with mum because they won’t provide the care that I need. Although I do get care daily, if you think going to the toilet on a timed scheduled is care… Who pees or poos on demand? I basically need 24 hour care, including two carers for every transfer. I refuse to live in a home or “shared care” because there’s nothing wrong with me intellectually and I have the right to live the way I want.

    1. I think you should look up Shared Lives. I know you don’t want to use ‘shared care’ but this provides 24 hour care without feeling like you have carers. Instead, they’re like family or friends. You should be able to live the way you want, I agree, but with the state of affairs at the minute unfortunately it’s proving near impossible to provide it.

  3. I was very lucky. I had the opportunity of study electrophysiology during two years. Then, when appeared something axtrasystole, activity! cried someone. You know, study and ablation of fast tracks in heart and activity focused myocardium muscle.Since then, the activity word,is relatives in my brain. First, I’ve classify the sick with dissability into with or withouth activity.
    The three cases, today, have activity. By pain two of them, and bi progression of the sick the third.
    The social care crisis is really but just thr english temperament and your kind manner to cenvert England an natural leadership in human right and dissabled world.
    And, what did you see, my bued son?
    And what dis you see, my darling young one?
    I saw a girl, that gave me a rainbow
    I saw a man that, have been fall in love.
    I saw a man that, have been in hatred. Sometimes, the dissabled persons hatred yourself. I’m thinking that to say miserable is to much. The life could to be wonderful yet.
    Today is absolutly, the complete comprehension of dissabled world.
    Key regards my friends.

  4. Get in touch and ask my voice to support you, and ask for a proper assessment of your needs, sounds like some incompetent care manager has assessed you wrong

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