Partners in Care and Health - Local experiences of info and advice - North West

tell me a bit about how you have found information and advice and guidance around the care for your daughter and the information, advice and guidance around the direct payment that you're entitled to. That's a good question. She is using this direct payment since 2008. But since 2020 they have since of the pandemic

They started cutting off all this, uh, activities. But again, she's using this from long time 2008. They were very, uh, flexible holiday and, uh, eating out

And for the swimming or gymnasium, it was all been funded, or it was going out of the direct payments, uh, benefits. But now it is restricted. They do send us this, um, kind of a booklet for the since they have got a new policy

Before that, it was all verbal and direct payment team were very, very useful, uh, to inform us. But now there are a lot of changes have taken place in a, uh, learning disability social work system. And recently they started to have a quarterly direct payments meeting at one of the places in Stockport

And I attended two or three times not all the time as and when it's suitable with the carer's help, then only we can me and my husband go and attend the meeting, and everybody has got their own issue and they discuss it before they would support where they would meet you and it would be verbal. They call it now a brokerage department. We had a good rapport with the two or three people over there

They have all retired now and now there are a lot of because of the top management has put the restriction to them so they can't help much as much as they used to to find a new carer or anything, right? Right, So that is a nobody can do anything about that. So what? So what happens now? How how do you find the information and advice and guidance that you need? I called them up. Ask them because the once once the user goes on a direct payment, they do not have a name

Social worker and everybody in that, uh, meeting are asking the top management. Can we? Why can't we have a A name, a social worker, so that whenever we need it, they are there to help us rather than a new on duty social worker. When they talk, we have to start the whole thing, whole scenario, whole history of my daughter again and again and which is very painful to us both

As a parent, they are still helpful. They are helpful. I won't say they are not helpful, but it takes time

And how does that make you feel some good? Some not good. Say more. You can see if I can get hold of the social service phone straight away, and somebody will come next day or in a week

Fine. Sometimes it's difficult to get hold of them because everybody is working remotely, and that is another delay in the case. But up until last, up until before the Christmas, she had a one of the social worker and one of the social community nurse, and they were very, very, very useful and taking everything on board straight away

But that social worker has changed the job, and then nobody was in. Our place has come back, but I think I had received a phone call yesterday from a new social worker, and she's going to find out few things, whatever are our requirements. I'm waiting for her to come back to me

So thank you. Thank you for sharing that I was just really interested in getting to for you to sort of share what difference it makes for you and the physiotherapist when she is still coming every today she is coming. Yeah, that's why I have to finish early as soon as she comes

She when she sees somebody else's face, she feels really that somebody is also caring for her. And at the moment, with the social services, My physiotherapy is a link for everyone. Whenever whatever

I have got an issue with my daughter. If I tell her, she will pass on my message to everyone because they have got a link of, uh, email. So my message has been heard

So just going back to the experience, particularly around the in information devices. When you ask for information and advice, how how quickly do you receive it? Variable. Sometimes you get straight away

The reply sometime It takes few long time. Or sometimes you don't get at all any reply. And who who is on the other side of the phone, right, so it it's it's hit and miss

And when you do you, when you get the information, is it the information that you needed? And does it make sense? Yes. Can you give an example of when that has been AAA? Good. A good experience most of the time is a good experience

OK, ok. Is that because there is another right? Another thing is like this we this, uh, quarterly meeting of direct payment is very useful. You they do please listen to you

And accordingly, they are trying their best to change all these policies. How many they have changed. How many not change can pinpoint because there are too many things

I don't have that much time to keep on reading all the policies. So tell me what changes and improvements would you like to see regarding what it was before 2020. We could able to use the direct payment without a restriction

Oh, with their policy, whatever the policy, we could able to use it, which is not now. There are so much restriction. We like to go back to the same

And how does that feel? Little bit. Not ok. And how would it feel if that was changed We'll be happy

My daughter will be happy, right? Yeah. And I can see you can really sort of hair. Um how and why? That is so important

Yeah. Is there anything else that you would like to say or share? Yeah, I remember something else. I like social service to give my daughter more support than what she's getting now

Uh, what respect? I have no clue. They have to come back to me. What is available in our area? She She likes to do, uh, more activities

But again, her mobility and all that is restricted. So she is mobile. She is not in a wheelchair, but again, and also a health issue is also putting her back not to do as much as what she could

She has got a complex issue. So I do not know what is available where because I'm more or less looking after her after the carer comes only for three hours or sometime, four hours a day. So I'm looking after her most of the time, so I like somebody to help her out

A little bit more will be helpful to both of us. Me and my husband and same with my daughter so that that this will bring me to kind of a final question, really, In terms of like we talked about, you don't know what is available or what I mean, how how how do you currently find out what is available? I need to ask the so social workers have got the whole list of activities and all that they have give us. But then also, it's a question of you

I have to keep on asking the people. I don't have that much time to call the people all the time because sometimes it's a remotely working situation. Whether you keep on holding the phone for an hour and no reply from the other side and what would make it easier? Social worker has to sort it out

Everything OK? It's also again, having said that about my daughter, really speaking as a parents as a carer. Also, we need a support as well, which we are not getting it, and how does that make you feel? I lived with it, so I won't say anything.