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Self Directed Support is part of the Transforming Your Care strategic approach to developing Person Centred Services. It is a pathway where individuals are enabled and encouraged to have more choice and control in how their care and support is provided. Self Directed Support is available as a way to meet the needs of individuals who access social care in both children and adult services.
This series tells the service users story on how self-directed support can improve health, wellbeing and maintain independence at home and gives listeners a unique insight into how the process could benefit those currently in Northern Trust arranged support.
Direct Payments EP3
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Welcome to the Northern Health and Social Care Trust podcast series, providing information on self directed support and direct payments. These podcasts will provide an insight into service user and carers experiences. It is hoped this will give those wishing to explore this option to meet their care needs, an understanding of the process and how it works.
And today we are joined by Jacqueline Kirkpatrick to describe how direct payments provide her with support to live with her multiple sclerosis. So I would like to welcome Jackie today. Jackie, suppose for us to get an idea of the support that you receive from direct payments, can you give us a bit of information about, suppose your journey with MS and how that began for you?
Yes. When I actually got my diagnosis? I was 32, but I'd had lots of symptoms before that, and because I'd taken a numbness in my jaw, and in my hands, it was like, my hands were numb for like 5 minutes, and I was like, i'm really really shaking, I'm trying to get the life back into them, and the doctor treated me for carpal tunnel syndrome, and then the numbness in my jaw, and the doctor said, I had to go to the Royal for an MRI test to see what was going on, and it was like, maybe three months later, I went for the diagnosis, and they turned round and said to me, Which I will never forget, you'll be glad you don't have a brain tumour.
You've got MS, and that's how I was told that MS, and it was me coming to terms with it. I knew of MS, but not really what happened, and, um, it was like, things started to go wrong, it was like, I was dragging my leg, and I got given a stick to use. And, um, it came to the point, whenever I was doing the shopping, and going around with a stick, I was picking stuff, and then I was going, I need to sit down, I need to sit down, and try to get those wee stalls to use.
supermarkets and I sat on them and then that's when I got a wheelchair and it was hard at the start because you get people saying oh what's wrong with you what's wrong with you and you see trying to tell people oh I've got MS it's just parts of your body don't work like the other. Yeah. And I said at the minute it's just this side.
But every time I take a relapse, I'm always left with a condition. And at the time, I had Relapsing, remitting, and then, because the symptoms never cleared up, then they sent me for another MRI scan, which had lesions on the brain, and they said you've secondary progress because the symptoms never cleared, and they gave me injections.
and the injections were taken off me because they weren't doing me any good. Because I progressed to the secondary progress, and it just says that there's nothing more they could do. So you're just left in limbo, like thinking, well, what else can you do? So it's like, yeah, you either sit in the corner or you get out and face the people.
Yeah, and that's always been my motto is to get out and try and do your best. Because I know there's people worse off than me, and that's one thing you always have to keep in the back of your mind. That, yeah, there is people a lot worse. But at the minute it's, it's tough. Yeah, like, everything you have to make sure you plan things.
That you know what's happening, where you're going, how you're getting, who you're going with and what you need the people to do to, to help you, yeah. Yeah. No, and it has been, Jackie, and I suppose, um, a very difficult journey for you to the situation that, you know, that we are now, where you're the full time wheelchair user. Yeah. But I must say, I have, your positivity, um, always shines through in everything you do, you know, regardless of what you have faced, you have faced it so well and you continue to maintain every bit of positivity. When your condition got to the stage where you were requiring, I suppose, that greater level of help, and I suppose it's to let people understand, you know, once we come out to complete an assessment with you, you required, you know, two carers at all times then when things had progressed. Yeah. But, outside of the regular care package that would be offered, you know, from the Trust, um, your limited movement meant there was so many things that you couldn't do for yourself. No, I could do absolutely nothing, it's, like, if you're on a cup of tea, you had to wait until the carers come in.
Or You needed your teeth brushed, or you wanted to put mascara on. Yeah. It's the simplest wee things, make a big deal to you. Yeah, and more than you actually realise. Yeah, and I think, you know, the realisation of that, and obviously week one, you had your care package, and then there was the assessment process, um, at that stage, people had the discussion with you around direct payments.
And the option then that, you know, a direct payment would be available, you know, going through a support plan with you of all the things that are important to you in your life as you've explained. Yeah. Putting your mascara on, drinking a cup of tea when you don't have that upper limb movement and you can't do those things.
It's, everything just is a big deal, no matter what it is, and to have the extra help or someone you can turn around to. And say I'm trying to keep up my persona, whatever, I was used to being out and well dressed and makeup on and you like to think you're the same person and you try and keep that to as much to your ability as possible.
Once, obviously, the assessment was completed and there was very much an identified clear need to fund the direct payment for yourself, um, how did you find your, um, your PA, your personal assistant, Tracy? How did you identify her to be your personal assistant? Tracy is actually my cousin, which was a godsend.
I knew she could be trustworthy. To have someone that can walk about your house and hoke and drawers. And you feel comfortable with? Yes, I do, yes. And that's a big thing, and I suppose once you identified your personal assistant then, there was the access NI process. Where we put through, you know, the, the enhanced check through the police to put everything together and then your insurance and then all the paperwork that comes with the direct payment.
Yeah, well, it's like, anything,if I have to do letters or any post that has to be sent, Tracy does everything for me. Yeah. And it's like, I have no secrets. But the support from Tracy means so much and that the flexibility that you have with that. And then I suppose we come out to do a review then on a regular basis, you know, um, you have your direct payment.
We're making sure that the hours are still working for you. Um, and I know there have been times where you've maybe spent periods in hospital or required additional care. There were times. When it was difficulties with packages. So we were able to increase the direct payment. Yeah. To provide you that greater care at those times.
Your movement and that gets lesser. So everything gets harder. I mean, even to bend forward. Mm hmm. It's difficult. Or to move sideways, you have to ask for help to do anything at all. Yeah. I found I really needed more help, you know. Um, what sort of things does Tracy do for you in the day? And what does that mean for you Jackie?
It's like you open my post. Um, it's like you just wouldn't let anybody open your post. Yeah. So, it's like suddenly you know, well, I'm not going to keep things to themselves. Yeah. You know, they're not going to shout about it. Um, I know life's not that exciting, but I don't want them saying, Oh, Jackie got a check up for this, for that?
Yeah, yeah. You know. And having the ability to choose your own PA. Yeah. And to be able to have that person that you feel comfortable and confident with. It's like, it's wee things like cutting your toenails, or your fingernails. Yeah. Just stuff like that. And you wouldn't ask anybody just to cut them. Yeah.
Plus, a lot of people's not allowed to do it , the carers. And they're not allowed to do things like that. Yeah. So. And if you didn't have, I suppose, a direct payment, and you didn't have the support that Tracy can provide for you, what would that, what would life be like then, Jackie? What would be different?
It's the wee things like you see. Something's sitting about, and you can't lift it yourself, you can't move it out of the road. I know it sounds petty like, but it's not really. No. Getting you shopping that you like to eat, you know. It's like, it's okay, ready cooked meals. Maybe a little time, but not, not a full week, you know.
No, you wouldn't want a full week. No. And I'm thinking even with other aspects, I know that when I've been up to visit you, um, I would see Tracy's maybe blow drying your hair and doing other things like that for you. Yeah, yeah, it does mean a lot. Um, it's nice, uh, plucking your eyebrows. Yeah. Or cleaning your ears out.
That's it. You know. And I think it's those personal things. Yes, but it makes such a difference when you can still get the things done. Yeah, if there wasn't the option for a direct payment for you to have Tracy to support you, do you feel that you would still be able to manage well enough in your own home?
No, no, definitely not. I mean, Tracy is such a good help to me. Nothing's too much to ask, she seems to carry on and do everything I ask her to do. Um, she tries to help me if I've got something I can't handle. And it's good to have that person there and talk to constantly. Because I just talk to the TV most of the time.
And that doesn't answer me back that's always positive. Yeah. With, obviously, the care package, I know that we can be restricted with timings for the care package, for your calls, for things like your morning, your lunch. But with a direct payment, you're not stuck with those times? No. It's like, if I think the carers didn't do something right, or do what I ask them to do properly, it's like, I always get Tracey to do it again , or it's like pulling up my pants, sometimes they don't fit straight enough, or it's just the hat, it's like falling down. But those are the things that are important, and I suppose this is why we want to make sure, you know, from your perspective, and it's important, because other people are maybe experiencing these issues, and Don't know about the help that's available through a direct payment or how that can be personalised for them.
Well, it's like I would recommend they try and get it because it does make a wild difference to you. Yeah. I mean, if I just had the carers coming in and out all the time, that's just not the same. Yeah. As having the whole person, you know. If you have appointments and things, I suppose, Jackie, given the fact that, you know, you do have such restricted movement, you do need Assistance and support to attend appointments with the direct payment.
I suppose maybe people are listening to the realise, you know, the limited movement that you do have, even things for you to be able to get a drink, to blow your nose. Yeah. You need that assistance. I have none at all. I can't do them. I can't. And it's like when you get an itch, people don't understand how bad it is.
Yeah. And it's like you get an itch up your nose and you can't pick your nose. To get the itch out of it or your eyes are itchy. Everything like that's a big deal aye. So, Jackie, I suppose it would be important to put where you are and the support that you get in context. I talk to different people and they advise me to go a certain direction.
About independent living, it was like, oh my god, what am I going to do here? I don't understand about tax, national insurance, and their wages, how am I going to work all this out? But because they have a payroll team, you can nearly phone them anytime you want. For advice or what you want know, but everything is absolutely worked out for you.
So you have enough of that to go through so you don't have to be extra smart. And I suppose when you got your direct payment at the start and you were allocated an amount of hours Yeah. Um, following assessment, all the paperwork, you know, was there much paperwork for you to do that way Jackie? There is no paperwork, well, apart from keeping your bank statements monthly and then it's like every three months you have to send them to the company and they take care of that from there on.
So everything's writ on your statements of what's been taken out, what's been put in. So that they know where they stand as well. Obviously, you wouldn't have, you know, the movement to send your emails and stuff. Were you able to do that over the phone with them, Jackie? I can't make a phone call myself, but at the minute I find SIRI
which is a godsend. I can usually phone by that. Everything's working out ok. And then once you contact the Centre for Independent Living at the end of the month, do you advise them of the hours or what work, you know, that Tracey, your PA, has done? I just go on them and I leave a message. Of what hours she's done, or if she's had any annual leave, or sickness, or anything like that.
Um, they work out that all, just from that one message. Right. And then, will they send you back that information, or what way does that work for you next, Jackie? So then, um Um, I get a, um, a letter with her payslip in it, and if there's anything wrong, um, I ask Tracey to go through it and if anything's wrong, you know, then I phone them up again and explain, um, then they work whatever the problem was, so you may like, that's it, that's as much bother as you have. Okay, so once you've the paperwork at the start completed and things are set up, it's easier to manage as you go along? Yeah, yeah. It is, okay. And they, you're saying they send the payslip then, and do you just pay then through your bank account, or what way does that work for you, Jackie?
I use direct payment usually. So you've always got a certain amount in your bank, um, on your certain account that the money's paid into that would pay the wages. And also, you get, you have to take out an insurance so that it covers for all the difficulties that might occur. And it's setting up the insurance.
Did you get that? Is that easy enough to set up as well? You just, uh, pay them, but it's never too much bother. Okay. If you just ask, you know, one of the people, they can really tell you what to do. No, it sounds like it's easy enough. In saying that, you know, I tried not to feel sorry for myself. Which took a long time for me to, at the start, you know, to even tell anybody what's wrong.
When they see you walking with a stick. Yeah. Maintaining this positivity, you're living at home, you're maintaining your independence, you have the support, you are the proof. It's like, I know there's people out there worse than me, so that's the way I always learn to handle it. So, as we discussed about the Centre for Independent Living, manage all your paperwork, you submit your bank statements quarterly, and then obviously, when social work come out to review, we review all of those bits that are together.
Um, Is there anything additional apart from that, once this is set up, Jackie, for a direct payment that you feel that you have to do, or maybe there's things that I'm forgetting that maybe you need to do, that would be important for people considering a direct payment to know? Direct payment, if they want to know about where's this money went to, or do you need, have you enough in your funds?
Which they have your bank statements and they'd be able to see, you know, what you needed this for, or what you were paying this person for, and they have the record in front of them, so which helps so that you're not spending money you don't have. And would that be the Centre for Independent Living has that information?
Yes. And they're a great help, um, if you've got a problem, you just, Give them a wee ring and they'll help me as much as they can. Okay. Um, would there be anything else? I suppose the purpose of this podcast is to provide information to people around a direct payment and to let them know, you know, I suppose the advantages of that.
If somebody was maybe looking or listening to this podcast and thinking, you know, that might work for me or I might be interested in a direct payment. What would your advice to them be, Jackie, as somebody who uses that? Yeah, um, I can only advise you to take all the help that you're given. Because it does change your life, really.
Yeah. At the end of the day. And it's been a positive change for you. Yeah, definitely. Okay. Jackie, um, thank you very much, um, for coming today and for joining us and giving us a great and valuable insight into the realities of living with MS and the support that a direct payment brings you with that. In this episode, we have discussed the flexibility of direct payments to support service users and Jackie has provided us with insight into how her direct payment supports her to maintain her independence.
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