‘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.

2 thoughts on “‘I rely on my PA – they are my arms and my legs’”

  1. Hello Rupy loved your appearance on: Wanted a very personal assistant. My son cannot speak – but it drives me mad when his needs are not scoped out properly or even denied – or I turn up and he looks a mess. Even in good provision – if you cannot speak up for yourself in an intentional way you need other structures – family good management to make sure your voice is heard and your interests met.
    Our son is sadly at OM. He has loved his life there – thank you for the years you have given him. Deeply sorry it is about about to close – and not regenerate into a fabulous community hub – with good housing and facilities for a whole range of people.
    The programme inspired me for his next life phase. I was losing hope. I have seen some terrible examples while looking for somewhere else. Very understaffed places. Very small places that mean living and doing things are difficult. Claiming to do all sorts of things that couldn’t possibly be happening with staffing levels and needs.
    Hoping that as part of the process – transitions will now focus on the things you highlighted in your appearance. Attention to detail you emphasised is so important. Good detailed care plans. Care plans that are legally sound and will support people not local authorities constantly driving down costs to unsustainable levels. ( Commissioners need to be inspected). Would also like everyone to work on their personal assistant profiles and living a life. These too legally scoped into care plans – so they happen.
    Good luck with your house and PA hunting. For those seldom heard because they cannot speak, sign or use Steven Hawkins type technology please hear their families.
    Would love you to meet my son and have you involved in the oversight of the transition.
    Great programme – really interesting dilemmas raised. Good to see no easy simplistic slogans offered. Continence – broke my heart.
    We need to talk about continence – would be great campaign – heard of people losing their life because of constipation. 2 in supported living quite recently.
    Helen
    ps when I first signed up for the blog I was worried about blog world so used my maiden name – nothing sinister just no young person to guide me.

  2. Hi Helen,

    I’m glad you enjoyed ‘Wanted: A Very Personal Assistant’, it was important to be able to highlight the invaluable support of my PA, whilst also raising awareness of the issues disabled people face. Thank you for telling me about your son, it’s great to hear that he has loved his time at Orchard Manor. I appreciate it is a difficult time for you but please do be reassured that no decision has been made about the future of the service yet. I know that colleagues are keen to talk and listen to your views and support your during this time. Should the proposal go ahead, we will help you and your son to find the right place with the support he needs so he can make that transition.

    Rupy

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