I’m frightened of needing the loo: #100days100stories

Angie first shared her story with us in March 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign.

How would you feel if you couldn’t have a drink of water, because there was no one to help you get to the loo?

That is the situation I have been in for the past few months.Angie

My name is Angie. I am 65; I have cerebral palsy and use a motorised wheelchair. For many years I have lived in my own flat in London.

My care was provided by a charity – their support workers were based in the flat above and gave me support when I required it, 24 hours a day.

It was exactly what I needed. I have always been very active in the community – at church, in campaigning for disabled people, in volunteering. I also cared for my mother until she died at the age of 95.

With the care I was getting, I could come and go as I pleased. I had control over my own life.

But in October 2013, the charity went bust. My local authority was only given 48 hours’ notice, and I was placed under what is called “emergency care”.

My life has changed completely. Now, care workers from an agency come to visit me at set times, four times a day.

Sometimes I’ve never seen them before – I have had at least 12 or 13 workers in the past three months. This is very stressful, as they are helping me with personal care including washing and going to the toilet.

If I need to go out to a meeting, or to church, I cannot eat or go to the toilet until my next visit. I have to stop myself from drinking, because I’m frightened of needing the loo.

I have overnight care, but during the day, care workers are only allowed to stay for their allotted time – 30 or 45 minutes. If the slot is up, they have to leave, whether I am ready or not.

Personal care takes a good half hour, so there’s often no time to eat properly. I had a slice of toast for lunch today, and I do almost every day. I’m often hungry.

My advocate and I are working with social services to get me a new care package, but the personalised support that will give me some choice and control over my life is hard to find.

At the moment I feel like my whole life has just stopped. I’m trying to keep things going, but it’s really hard.

It hasn’t been the fault of the care workers, or social services – it is the fault of the system.

Care staff need to be better paid and better trained, and care needs to be tailored so it’s right for the individual, not the other way round.

Everybody has the right to freedom, disabled or not: freedom to come and go as we please, and to live in the community as an equal.

At the moment, I do not have that freedom.

The care many disabled people receive is so basic that you can’t have any ambition, because there is no one there to support you.

So many disabled people will never reach their full potential, and that is a disgrace.

Since this story was first published, Angie’s 24-hour care has been restored, but she has continued to have problems getting the personalised support she needs. 

Find out more about Scope’s 100 Days, 100 Stories campaign, and how to get involved.