Storyteller shares exeriences of information and advice in relation to social care and support for her brother.
Transcript
And was that was that was the information that you were finding things out. Who is that from relatives? Friends of mine, You know, people from mencap people, you know, people in the whole, you know, learning disability world. You know that, you know, because obviously we know we've been involved in men, cap for a long time, the local men cap group, and now you know so and then, like I say, and so and then like I did, I went to a signpost meeting where they were looking at different groups. And I remember one of the ladies who I knew from Mencap, uh was involved in the carers for adults with learning disabilities
So she signposted me there to them. And that's why I started going to those groups. Uh, and that's probably where I get kind of a lot of my information
Tell me a little bit about those groups. Are they local authority led? Are they, um, kind of carers for adults with learning disabilities is for carers. You know, we get we do, you know, it's meeting and we get people, um, Stockport Advocacy
Um, come to meetings, come to those meetings and help us with information and things and and then we have beers from the local authority. Mencap, um is a It used to be a lot more thriving. Um, they have clubs and the gateway clubs and things and and used to have social events
Dominic and I are both on the committee now. Um, but it's kind of, you know, basically we have a committee. We have, uh, um a building that, um, we can rent out for another organisation and we have to get a couple of gateway clubs, and then we have a Christmas party and a Halloween party and hopefully a garden party this summer, so that's kind of, you know that
So the committee meetings again are, you know, are, you know, just kind of very kind of, Yeah. So in, in sort of going back to sort of dom a little bit and I guess you're the the the journey of that. And has there been times where you've needed to access information or advice from your kind of local authority or council about social care for Dominic? Yes
Well, really, it's It's probably been, And this is where the curator for change lady was is has been to do with, um, direct payments because, um, basically, obviously, as lockdown happened, the lady who was Dominic's carer had her own health issues. So she then retired. And, of course, I was at home with Dominic
Anyway, um, so at that point, you know, we were having the direct payments made, and and with direct payments, if you have a certain amount, they'd take it away from you if you got if you exceeded it. But I wanted to kind of find out. I mean, I think I had a phone call
I did. I'm sure a phone call from a social worker early on in lockdown to see if there was anything they could do. But as Dominic is mobile, um, vocal and, you know, independent
Apart from, you know, daily living requirements. I was probably what would low priority, Um, and, you know, and again, I had I mean, it was difficult, but there was There was wasn't really anything anybody could do in that. Uh, you know, it was difficult being in lockdown with him, just the two of us, but it could have been a lot worse
He loved it by the way he really enjoyed lockdown. Thought he might never go back to work again. Um, but it was just, you know, it was just the thing and making him go for walks and keeping him entertained
But again, that was good in that we had family who would have face time with him and stuff with him and and, you know, um, because he's he's he doesn't like going outside in the garden, you know? So I had to drag him out for walks and things and contact with the the social worker and conversations around direct payment. What was that like? As it was it a positive experience. It it was quite frustrating in that, you know, contacting the local authority
And, um, you know, you went through to a call centre and a lot of the staff were working from home during the pandemic and and, you know, and I can understand that, but it was like, you know, I had a conversation with someone who was looking after his sister's dog that kept barking in the background. It was friendly, but it it was just it wasn't very professional, if you like, um uh the way things went, and I wanted some ideas of of, you know, that I wanted to use the money to provide Dominic with some experiences. Um, when he couldn't go out with his carer
Um, and we did, in the end, get a N a Nintendo switch. He eventually said we could get that so he could like to get the dancing and do exercises. And then later on, when we could go out more, I got him a national trust membership so that I could take him to places and go
I'm just going to go back. Because in 2019. So this was before lockdown
Beginning of 2019, I was diagnosed with breast cancer, right? And, um, basically, I'd already contact. I was having some issues just around, uh, how the direct payments were paid, I think. And And somebody did come out to see me
That was in 2019. I think she was a nurse, not a social worker. Um, but it was from the social care team
I forget why she'd come now. But, you know, I did mention I was about to start my treatment. Uh, but again, you know, it was if you need something contact us
But by the time I was having my treatment and the family were all rallying around, you know, it it wasn't. You don't want to kind of start getting the social workers involved, and, you know, and I wasn't in the, you know, you know, chemo, and it leaves you a bit drained. Really? So you don't wanna Did you feel from that conversation and any other conversations that you ha were had an understanding of what you might need in order to ask for something? Yeah, well, I didn't know what I might need, because it was a bit unknown
I haven't started my treatment. Uh, and again, it's just, you know, like I say, I had family support. Dominic doesn't like being with people he doesn't know
So there wasn't a lot. Um, I didn't feel that that I didn't know what they would be able to offer. That would work for me anyway
But I do have financial support from the family as well. Um, because their understanding is that, you know, somebody's got to look after him so they contribute. They do, and and you know so
And I'm very lucky in that respect. And I suppose that's why I just you know, I suppose the thing is, it's much easier to rely on the family, although it does make you feel like a bit like a charity case sometimes than having to go through the rigmarole of contacting social services and, you know, waiting for somebody to ring you back. Because that did happen then after because when I was claiming when I was contacting him about direct payments and I was speaking and I and I made two or three phone calls, then to adult social care regarding direct payments, and I was get getting different people and bearing in mind that, I mean, I've been I've been paying Dominic's carer as we called her, although apparently it should be P A
We're paying Dominic's carer, and we had been paying her since 2011, and I finally in 21 I think, was talking to somebody, and, uh, I was told I was paying them too much because it was the minimum wage they should be paid. So I said, Well, I've been paying, you know, and at the time that we set that, I mean, I've not had any contact with direct payments. Since then, when you had those conversations, were you given consistency of information? Or were you given different information based on who? Who you spoke spoke to? Well, what I think what happened as well, then, Because when the direct payments, uh, issue started, I got there was some issue, came up about direct payments and and I was also getting emails from brokerage and other you know, other people involved in in the payments and something came up and they said, and I got an email
I think this was from the direct Payments Finance Team, the the actual payment team, who said that whatever I was querying should would be included in the support plan. And I thought, I don't ever remember seeing Dominic's support plan. You know, I presume he's got one
Or what improvements do you feel should be should be made? Well, I think probably the one thing I think would be helpful is to have. And I know that's an impossible dream this day these days, but is have a named social worker, a named contact who and, uh, I suppose it's This is a theme that I know has come from elsewhere, but and I mean, it was not. It's not as though I'd be contacting a social worker and provide, You know, I'm not a case load
I just want somebody I can contact a name person I can contact who knows me. Who knows the situation and is able to make decisions or and tell me what or is able to go and find, you know, is able to have the decisions verified you know about and it And it is mostly because we don't bother social workers. We don't bother social services a lot
You know, uh, I look after him. You know, we have problems and issues. I sort them out within the family
But it's just really, I suppose, using his his money, the money that he is paid to access. Uh, you know what what direct payments is supposed to be for? I'd like somebody to contact.