Tag Archives: care

‘I rely on my PA – they are my arms and my legs’

This is a guest post from Scope trustee Rupy Kaur, who tells us about  appearing in the BBC3 documentary Wanted: A Very Personal Assistant. 

When I applied to be on BBC 3’s Defying the Label series, I wasn’t looking to be the next top model or new presenter; I wanted to raise the issue of how important it is to be a personal assistant (PA).

The two-part documentary, Wanted: A Very Personal Assistant, airs on BBC3 at 9 pm tonight and follows several disabled people, including me, looking for a new PA.

For two weeks the film crew followed me trying out a new PA and at the end of the trial period I had to decide if she was hired or fired… you’ll have to watch the programme to find out what happened!

What does a PA do?

There are many misconceptions, about the role of a PA. I get the feeling people think the job will mean they can have an easy life – just wiping someone’s bum… they couldn’t be further from the truth.

I’m 27 years old and have cerebral palsy. All my limbs are affected and I use a wheelchair. I can’t do much of my personal care myself, so I need help with getting up and getting dressed.

I rely on my PA to help me with everything – they are my arms and my legs. I have a team of people that work around the clock to give me care seven days a week.

I live at home with my family but if I need to stay somewhere overnight, my PA will too. They’re there to help me do what I can’t do myself.

As well as helping with day-to-day stuff like arranging doctors’ appointments, I need my PA to help me with admin, emails and assist me at Uni, where I’m studying for a Masters in Health Psychology. They also need to be aware of the work that I do to support Scope as a Trustee.

‘I’ve had lots of bad carers in my time’

I’ve been receiving care since I was 15 years old.

Back then we called PAs carers. I’ve had lots of bad carers in my time. Especially in the early days… In fact I would go as far as to say some of the people were atrocious. They used to waltz in whenever they felt like it, mostly in pairs which often made me feel left out. They would regularly ignore me and my needs, spending their time catching up on the antics from their weekend – which was very educational for a 15 year old!

Some smelt of stale alcohol and were partial to paying themselves over the odds for my care. They often exaggerated the amounts on the cheques they needed to write on my behalf. I can’t write cheques but there was no safeguarding me from this.

At the time, I was young and not confident to challenge them. I was just happy that they were there to help me go to the toilet and get from A to B – I didn’t know what my expectations should be.

I guess all these bad experiences have made me clued up on what to look out for now. I’m no Alan Sugar but I’m very particular about who I recruit and take the process of looking for a PA very seriously – I mean wouldn’t you?

What I’m looking for in a PA

Ideally I’m looking for someone who is open minded, has initiative, who is friendly and ultimately someone I can trust.

I could train anyone to use a hoist or to cook but finding someone who you can connect with is a lot more difficult.

Your relationship with your PA is very intricate. You’re someone’s boss – but you’re relying on them for intimate care. So finding the right carer means absolutely everything.

To make things easier for any new PA I hire, I have produced a 15 page handbook for them to read – not because I’m fussy but because I have complex needs that would take months of training for me to explain everything to them. My PA’s have kindly compiled notes to help people understand my impairments and my needs.

Although I really enjoyed my time with the film crew and sharing my experience I truly hope that it also goes some way to show how important the role of a PA is.

Find out more about Wanted: A Very Personal Assistant.

Three things the new government needs to remember about disability – #100days100stories

Guest post by Josie from Bristol. Josie has a number of impairments which affect her health and mobility; she uses a powered wheelchair. She is sharing her story as part of our 100 Days, 100 Stories campaign.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.Close-up headshot of Josie, a woman in her late 30s

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic  reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Two days away from the general election, here are three things the next government needs to do to make sure disabled people are better supported.

1.  Social care should support us to live, not just to survive

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean.

My basic needs are met – I’m clean and I’m fed. But I haven’t got any allocated support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

I understand why we’re in the position we’re in economically, but I worry that there will be more cuts to social care, and I really can’t see where they are going to come from.

2.  Remember that benefits are people’s lifeline

There’s nothing in my life that can be cut. Every penny that comes in goes back out, and I have to budget very carefully. There’s no ‘fat to trim’, as politicians like to say.

If, for example, my benefits were taxed, the money would come out of my food budget. I wouldn’t be able to afford online delivery for my shopping – I’d have to send a support worker, and miss a meal or a shower.

Josie, a disabled woman, smiling with her teenage son
Josie with her son Olly (her daughter Chloe is in the photo at the top of the page)

There’s a belief among some people that many disabled people don’t want to work, or choose not to. In fact, it’s the exact opposite. I didn’t choose to get ill, I didn’t choose to become disabled.  I actually found it very difficult to come to terms with the idea of claiming benefits.

Soon I’ll be reassessed for Personal Independence Payment (PIP), and I’ll have to justify myself again – there’s always a huge fear that what I have will be taken away.

3.  Disabled people deserve a role in society

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

The loss of the Independent Living Fund has been a blow – people like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

I’ve watched a lot of political debates such as Question Time over the past few years, and I haven’t seen a single person speak who uses social care. There have been a few family members, which is good, but disabled people should have a chance to speak for themselves.

A question of equality

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Politicians should look at my situation and ask themselves: “Would I be prepared to live like that?” And if the answer is no, they should be ready to make changes.

Josie runs a website offering support to people with idiopathic anaphylaxis at www.iamast.com

Tomorrow is the final day of our 100 Days, 100 Stories campaign. Find out why we did it, and read the rest of the stories so far.