Tag Archives: care homes

There’s no sign outside: it’s just my home – #100days100stories

Guest post from Tony, who lived at Scope’s Lingfield Avenue care home in Surbiton until it closed in November 2014. He now lives in supported housing nearby. Tony’s story is part of our 100 days, 100 stories campaign.

It’s important to me to be independent. I’ve had a couple of jobs – one in an off-license serving customers, one in a stables working with horses, one in a music shop.

At the moment I’m working in a garden centre in the grounds of Springfield Hospital in Tooting. In an ideal world I’d like to work with children with special needs or learning disabilities. I had a voluntary job in a school for students with special needs for five years.

Living in a care home

I’m 47 now, and I lived at Lingfield Avenue (pictured above) for close on 20 years. Some parts of it were good and some parts of it were bad. When I first went there, there was no lift at all, so wheelchair occupants couldn’t get up to the second floor. Some people would have to overreach for the sink because it wasn’t at their height. All the bathrooms were shared.

I didn’t feel I had the support to live as independently as my disability would allow. It was just the way it was run, I suppose – I felt it did not allow residents to realise their potential.

Moving out

When the word got out that Lingfield Avenue might be closing, and I was made aware of it, it was a shock. In a way it was a bad thing, but in a way it was a good thing. For me it was good, because I’d always wanted to move somewhere that was less care-orientated.

One of my social workers said to me that I could try my own flat, but I wasn’t ready for that, and I’m still not now. So they found me the place I live now, which is supported housing.

Tony using his laptop in his room

I share with a few other residents, and compared to Lingfield Avenue it’s brilliant. You can use whatever independence you’ve got, and the staff really encourage you to do so.

Being more independent 

You can do your own cooking – anything you want to do really. I keep asking one member of staff if I can make my own breakfast, and he says, “you know you can, you don’t have to ask me!”

They say to me, “If you need help, just shout out and we’ll be there.” So far I haven’t had to ask for it much, but that doesn’t mean I can’t ask.

Exercise book with handwritten notes about gardening
Tony keeps detailed notes of his work at the garden centre

I had to get used to a new area, new bus routes. As yet I haven’t gone from here to Tooting by bus, but I’m itching to try it. One of the other things I like about living here is that they haven’t got a sign outside saying what the organisation is. It’s more homely, because there’s no label – it’s just a person’s home, rather than ‘residential accommodation’.

Looking ahead

In the future I’d like to find some form of paid employment again, because I don’t only want to help myself, I want to help the general public.

I’m happier now I’m established here, and I’m far more independent. One day, when I’m ready for it, I quite like the sound of moving into my own flat.

Read the rest of the stories from our 100 days, 100 stories campaign.

The system’s not about people, it’s about money – #100days100stories

When Kenneth moved into a care home, he imagined gaining independence and the chance to learn new skills. What he got was a very different situation. Kenneth shares his story as part of our 100 days, 100 stories campaign.

Kenneth wearing a baseball cap smiling at the cameraI left home when I was 19. Like anyone else, I wanted independence and my own space. I wanted to choose what time to get up in the morning, what to have for lunch – simple stuff like that.

I moved into a bungalow with three other young disabled people. We had staff on site 24 hours a day to support us. I thought it would be great, I really did. My dream was to make friends and have a social life. Maybe go on holiday with my new housemates.

After a few weeks, I realised something didn’t feel right. For a start, everyone was in bed by 8.30pm. Why would you go to bed so early every night? It turned out my new housemates had no choice – they were being ‘put’ to bed early, even if they didn’t want to go.

Nobody was listening

I wasn’t getting the support I needed either. I wanted to cook my own dinners and to get out more in my car, but that wasn’t happening. I felt powerless because nobody was listening to me.

The days were long. I work so I could get out of the house but the others spent a lot of time watching TV. I remember coming home to find one of my friends, a girl who uses a wheelchair, sitting at the kitchen table with nothing to do. She’d just been left there on her own. Another time I came home to find two of my housemates with their wheelchairs facing the wall. I don’t know how long they had been like that – hours maybe.

A modern day institution?

When people think about institutions, they imagine these big old buildings with lots of residents sitting around doing nothing. But we were living in a brand new, purpose built bungalow and it was just as bad. It’s not how it looks on the outside; it’s how it’s run on the inside that matters.

Despite my mum and social worker getting involved, nothing changed at that place and I moved out. Now I live in another bungalow with 24-hour support. It’s not perfect but it’s a lot better.

In the future, I’d like to live on my own and have a personalised budget so I can choose the care I need. I’d like live-in support workers so I can do what I want, when I want. Personalised budgets are available where I live but disabled people are still getting stuck in homes because it’s the cheaper option.

Less choice over our lives

The system is so wrong. It’s not about people – it’s about money. Our social care and benefits have been slashed which means young people like me have little choice over our lives. Through my job at Change.org, I met Norman Lamb MP, the Minister of State for Care and Support. As I told him about my experiences, I started crying. I couldn’t help it. I hope what I told him has got through. Something has to change.

Find out how you can get involved in our 100 days, 100 stories campaign and read the rest of our stories so far.