Andrew talks about being a Personal Assistant - the highs and lows - what makes a good PA, what does being a PA involve and the frustrations of not feeling able to be flexible with a persons support plan. The importance of needing life experience, being able to deal with all the different agencies, understanding the letters, being an advocate and more... And the lack of peer support for PA's. And being able to give time to the person you are supporting and engage in a meaningful way - and how patronising  and impersonal some agency workers can be. 

He also talks about aspirations for personalisation and how it would be great to see peoples care plans tailored to them, being able to pay for physical activity, and the need to be realistic about what is accessible or not! 

And the frustrations relating to wheelchair access and lack of expenses for mileage etc...

Oh, Andrew to start. Good evening. And welcome to this, um, interview. Um, Andrew, could you tell me of your, um, experiences of, um, being a p a in Essex or sorry in your in Essex? That's right

Sorry. OK, experience of being a p A in Essex. Um, right

It's, um it's it's it's mixed. Um, on the individual level, the work itself is very rewarding. However, there's next to no support from, um from social services

There's, you know, um, they don't communicate with me as far as as it's as if it's as if I don't exist. Anything that I've needed to know about covid has had to go through David, the person I'm caring for, and that's basically so you, you know, and and and and all the The thing is to address d p. A

And things like that. And, uh, yeah, it's, um, there's in terms of peer support. There isn't any

There's no there are no, uh, support. No support groups, no support networks, nothing like that. Certainly not for not for paid carers

I think there's one for un unpaid carers, and I think there's there's one for, um, for special educational needs that sort of thing. But that's about it. Really

Um, OK, so that's that's that's That's the support side of side of things actually work its work itself. I I I enjoy it, I but But then, well, I I it's I always feel it's what you make of it. And I don't feel I'm constrained or Hebb in by what's what's in the support plan

Because the support pad, I think is very predicative and says, You know this This number of minutes on this this number of minutes on that and you know, there's stuff you can there's stuff you can't quantify. So also the sort of things, the sort of things I do as I do as a P a. Well, it varies

It's it's got a whole range of things. There's personal care. Um, that includes sort of washing dressing, um, dealing, dealing with any any dressings that need changing that sort of thing, um, through to cooking

Um, menu planning, which is a biggie, and social services don't even don't don't acknowledge that. That's that's a that's a need, um, offset cooking. Um, cleaning or washing? Yes, because of, you know, working out working out a schedule for what gets washed

When? Throughout the week, Um, doing doing all that. Loading the washing machine and making sure it's on the correct programme for the load unloading it, putting the clothes out to dry. Anything that needs ironing

Ironing those. Um OK, so So that's it I've said I've said about about cooking. Um, Also includes, um, accompanying David to meetings with, for example, Um, uh, people in authority

So that's like so social workers and the like, um, medical appointments. Uh, sometimes it can be really useful. Like, for example, we managed to get our our flu jabs done, um, at the same time, or rather, one after one after the other, but that that that would work really well, this this this year

Um, so I said medic medical appointments, Um, going with him on journeys where he's going to need assistance. Like like train journeys and that sort of thing to make sure that the the assistance with the travel make sure that all that works out. Um, so I quite for quite quite it's quite a quite AAA full a full time job

Um, I don't I'm I'm sure I work more than more hours than I'm more hours than I'm paid for. But but I'm sorry. I just do what I do, What's needed

And of course I have to balance this with working full time. Um, fortunately, that sort of job I can do, I could do anywhere and so that and and that's useful. And it's flexible with time, so I can actually do caring stuff in the middle of the working day

Take breaks for that and back to work again, that sort of thing. So to give you a bit of a background. Really? Yeah

Um, is there any additional, um, needs that you're caring for additional rate R. Yeah. That's an interesting one

Yes. Yeah, yeah. Yes

Um, the person I'm caring for has has autism and has some and dyslexia. So has problems with, uh, things in writing. Uh, emails, forms, paperwork, that sort of thing

And some letters because very often that things aren't worded very easily in a way that's easy to understand or to follow. So I help with that, and and with writing replies, um, also help with, um with with booking things. Um na navigating booking systems, things for like like train tickets

And that can be, um, pretty difficult sometimes. I mean, even even even even if I would say even for a for a neurotypical person would probably find things, things difficult. Um, sometimes I'm I'm Obviously there's there's there's the plus side to the a the autistic spectrum as well, but that's a separate conversation

Really? Yes. Holding all quite interesting. So, uh, so really, you Do you feel that, um, you're given some proper support with autism? Not really, No, no

There's some sort of in in information from the n A s, not national autistic society. But it's sort of like, um, idiots guide and help cards and things and not a There's nothing. And there's no I say and and, uh, until until until recently that support network being being being set up, um, in in northeast Essex at this at this very moment

But there's absolute, absolutely nothing. And in fact, if there's anything at all, it's for the it's for low functioning autism, not high functioning autism. And that makes that's so that that is that is so frustrating because the needs of somebody with, um with with high functioning autism are so different

It's that, you know, we're not We're not talking about basic needs here. We're talking we're talking about, um, you know, help understanding the nuances of language, gestures, emotions, facial expressions, all that sort of thing. And it's it's a lot

A lot, a lot to, um to deal with. Oh, Oh, yes. And of course, metaphors and Simon and all figures of speech and all that, all that sort of thing

You know, those, um, somebody, somebody could write AAA big training manual on it, but it would be out of date as soon as it was published. So really no, no supports you. Just It's sort of like have to muddle through really rather hard

Sorry to hear that. Um, so in your view, what do you think makes a really good P A. Well, there are a few things

I think the 1st 1st thing is you have to be a good listener. Almost. I'd say you have to be a good detective because you need to be able to find out

Find out from the person you're you're you're you're you're working for what? Their what their actual needs are as opposed to what some social workers put on a bit of paper. Um, you have to. So I have to have to do that

I have to be good at good at good at listening and and sort of Li listening in between what's being said and reading between the lines and that that sort of thing. Um, need to be able to work on your own initiative and do do what's needed moment by moment by moment because be because the support plan won't won't won't cover every eventuality, so you need to need to need to be able to do to do that need to. I I think a good a good a good p A needs to have a good grasp of the current situation

Like, for example, we are, you know, a covid pandemic. Need to be really clued up about what's what's going on. And you know, you just can't do the job

You need to you you need to need to have an eye open, an ear open for for current affairs. What's go? What's going on in the world. What's going on in society

Sort of what's what's what's coming up so that you can have conversations with a person. Excuse me, um, ahead of a ahead of that So they can be prepared for for changes that are suddenly sprung on you by the government and that sort of thing. Um, I think you really you need life experience

Really, you know, experience of a lot of a lot of things in life experience, of dealing with authorities, experience of dealing, you know, dealing with the health service and all that. All that, all that, all that sort of thing. So that because and part of it, I haven't mentioned as advocacy as well because a lot of people, a lot of a lot of people, um, with who who, who have P A s are people who are supported for allegedly supported by social services

Um, because because of the way the system works, they aren't really don't. I don't really get a top opportunity to pro to process how they feel about things and where they want to go, where they want to go with their life, what things they want to do. So, in the midst of doing all all the practical stuff, really, a p a needs to be able to give time to the person and and have have have those those sort of conversations with them

And I think that the the ability to do that and to engage with them in a meaningful way is is really important. I'm not sure that many people can do that. Well, I've come

I've come across, um, agency workers who do that in a very patronising way. And it's like they don't really understand. I don't understand

I haven't got a grasp of anything at all beyond. Beyond. Here are the Here are the gloves

There's the soap. There's the water sort of thing. Hm

Um, right, What I was gonna say What's the name? Um, in view of what you've said, Um, is there anything you would like to see? Um, changed within the whole aspect of the care that you give them the P. A s perspective in Essex? Yes. Yes, there is

I would I I would like to I would like to see full and complete personalization. I would like I would I I would like to to see people, people, people in people, in in in receipt of help, having a have a have a have a complete package tailored to them includes including money for doing things like, um, like physical, physical exercise, um, health and well being. Probably more because it's from social services more, more, more on the well being

But but thinking about the mental well, mental, emotional and social well being rather than just physical well being, um, I would like them to be realistic about what what's achievable and what's not. For example, when they say about accessing local shops, Um, for somebody who's a wheelchair user like, for example, in, um, you could probably count on the figures of one hand or the all all the, um all of the, um, commercial premises that are that are that are accessible to a wheelchair, you see, so that doesn't give you many options. So then you'd need to go elsewhere, so that means you then have to do research and find out what's available

And everything at the moment is all around. Pay time and that sort of thing. But there's nothing of no factor in, say, um, cost of petrol or diesel to get somewhere the cost of doing what Whatever you've gone to gone to do, I mean, So So at the moment you have the person receiving the, uh, carers' support having to dig into their own pocket to pay for pay for AAA lot

A lot of it, um which I don't think it is right when they're on means tested benefits because those aren't really designed for you to be able to save, Sort of you know enough to get enough to get by on. And often I found myself as the p a. Having to to dip into my earnings from the B A work in order in order to be able to make up the shortfall so that we can actually boost do do meaningful stuff

So you know the fact there's no personalization and it's all penny and every everything is everything is penny pinching. I I think if they were, if they were to realise that you can get a lot more done more effectively and at no extra no extra overall cost by actually by actually letting people personalise and then once it's once the money is given, you're actually trusting them to spend it in an appropriate way. Not saying Oh, it's only this is This is only supposed only supposed to be p A earnings

So that's all you're supposed to use the money for, and it's it. It it's it's It's ridiculous. Honestly, I feel I'm taking a job with my hands tied behind my back on a final note

Do you, um, think that the person you're caring for has, um, a good quality of life, and do you get a good quality of life out of it? That's really interesting. One. I think you actually need to make an effort yourself to make the have the good quality of life

Because if you were to rely, if you rely on what's provided for you and you just basically But you, you you you just basically, um, do what to do, what's in the in in the support plan that is no quality of life at all. Um, we tried it. We tried

We tried. We tried to stick it. Stick to it

Um, it's, you know, literally what it was. And you basically it's basically you just just add add up. Sit sitting on your all the time

And it doesn't It doesn't do anybody any any any good. Um, you know, you get on, get unhealthy, put put on more weight. And And that and that sort of thing

No, it's There's actually no real, no real incentive to have any quality of life. And if you mentioned if you mentioned this to social services, when you're doing an assessment or a review, they pay lip service to it. But there's but that's that's it

I don't you know, to be honest, I think you have to. You you have to look beyond you. You have to look beyond the, uh, caring situation to get any quality in your life because because you won't find it there

Hm. Ok, thank you very much for, um, uh, taking part. I shall just stop the recording

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