Transcript
and when you've needed help and support and you've contacted them. What's your experience been with, you know, accessing the website. Accessing the phone line. Accessing social services very, very hard
If you call them, you are press number one. Press number three Press number four. You are in the queue
Number 26. 28. How long it will take? You don't know Then when it comes to 1230 everybody has gone for lunch call later again
You have to start the procedure from beginning email. If you write they Oh, we have received your email. Uh, automatic reply
But the real reply No due or sometimes doesn't even automatic reply doesn't come to me with everything. Not a social worker GP NHS anybody you do, we are. We are waiting in the queue for Ivan
How long you don't know? Tell me why. It's particularly difficult for you with some of the, um challenges you have after having a stroke. I'm facing the challenge day by day because nothing is going straightforward with my life
Because whenever I want something, I I'm trying to get help. But I don't get the help. And then I I do mistakes
I create mistake because some are frustrated, maybe angry. And my mistake. I do my mistakes
And when you receive information, is it accessible to you? Can you always read it? Can you always? No, I can't read it at all because they are very small 1000 times I have mentioned them. Everybody. Not only soc Uh uh, this, uh, borough council
But NHS anybody nobody is bothering about. Uh, I'm partially blind. All the letters I will show you
I have whole file, which I save all the letters from doctors GP any other part? Nobody is giving me the They're supposed to write a big letter. So which I can read. Um, my mom is deaf, Fully deaf
She can't hear. She doesn't speak English. She only can communicate to people like me and my sister with lip readings
And my dad has been diagnosed for dementia. I think this over a year now. Um, and also my dad
Communication is not very good. He been living in the UK for a very, very long time. I think he's been living in the UK for 5060 years
But he always worked with the community people worked in a restaurant where people, um, only speak their own language. So since my dad has been diagnosed for dementia slowly, slowly, things is getting worse. You know, like any dementia Do
What you described was a really good experience of the diagnosis. How did you end up being in contact with social services in the first place? Yeah, it was through, um, part of GP. Um, when I made, I have made them concerned about the situation
And the doctor said, I you know, we we need to refer you to the adult social care. We need to refer you to all these services available, et cetera, et cetera. To to get you needed help
Because of that, I got contacted with all this support. Um, so some of the support is not any good to help my mom with the washing and the gardening once a week. Um, but again, my mom doesn't want what was good to her because she said, Forget about garden
I can't even can't even deal with your dad inside the house because he is working. Turning the gas on turning the boiler off boiler on opening the windows, trying to wash his watch. Yeah, it's just they're not listening
My my mom's situation, they're not They're probably listening, but they have to follow. Probably those tick boxes. That what is said, You know, your your dad is not eligible for full time care because of until this has happened
So that's the thing. So they need to assess my mom, not my dad. My mom is not capable to look after my dad
Yeah. What would make a difference? Uh, yeah, III. I think the, um, things need to be simple
That's like when you need to get information, advice or any guidance around mental health services services in the community. Things that might help you with your mental health. How easy is it to access via the like council website, or like, yeah, other ways of I've never accessed it like that
I didn't know you could access it through council. I don't really know who to go to. I've not been told anything about who you can speak to
Mm. What impact does that have on your mental health and well being a lot. I don't believe that we should be as people's mental health should be in crisis before we get help, I think that we should be helped before we get there
It seems to be that that's how they want you. They want you at rock bottom before they're gonna help you. I don't
I don't feel like there's support out there. It's part of people with severe mental illnesses like bipolar, to If I'm in a manic stage, I feel great and that I don't feel like I need help. Or but actually I do, and I won't engage
I'm not gonna be the person to reach out and say Actually, I need help because at that point in time, I feel like I'm on top of the world and I can take on everything when actually I'm really ill. And when you've been in crisis and called the council Crisis team, like what advice or support, like the crisis line has given you, I don't phone crisis line. Not after I had the experience with them where they didn't seem bothered and they just told me to go to A&E
I went to A&E. I sat there for 12 hours to have a nurse tell me that the doctors are really busy. Um, she's not gonna look me in my eye because she's too tired
Tell me a bit about how you have found out about that information. And yes, that good question. I 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 health, then only we can me and my husband go and attend the meeting. And before there was 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 and now there are a lot of because of the top management has put the restriction to them so they can't help much. 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 mode as a balance
Can I ask you, what would you want to say to those people offering information, advice and guidance and support around social care to get it right? What do they need to do to get it right? They're supposed to send me all the documents properly, which I can read myself from. I don't want in my mother lung language. I can read English
No, I can read English. I can understand English. So just send me the letter that, uh, G you are supposed to do ABC D EFG you are not supposed to do in case of emergency
Call this number in case of anything email this number we will touch. Get in touch you within five working days, something is should be there Not after six months or seven month or automatic reply. It's not acceptable at all Person like me because I am 24 7 housebound
I don't go out ok. My dream situation because I have thought about this quite a lot is that you have someone who meets with you when you first get your diagnosis if you like. If you if you can define yourself as someone who is eligible for needs, you know, then you don't wait for 18 months for someone to come along and to confirm that you you know
So So I suppose what I'm saying is that either socially or health wise, you need to have an immediate response. You need support, therefore you get it. So someone comes along and says, I know that you've got this situation
You need support. Tell me what it is that you actually need. And if you say I don't know, that's OK, I'm not just gonna go and say, All right, I can't help you Someone who walks alongside you and knows what's available but also is prepared to help you set up what might not already be available
So I after I'd done the partners course. I also did a support brokerage course with the national brokerage network, and that was about together. If you if you get sort of direct payments to get support or a individual service fund, you actually say right, if this doesn't exist in my area, we need to create it
Let's make it happen. Let's find that support. Let's let's define it and get people in who might be prepared to, you know, set it up and help make it happen
It means being quite creative, but that's that would be my ideal situation. If I'd had that from when my sons were really young, I think I could have I could have had a much more pleasant experience of what life was like as a as a parent of a disabled child, and I could have felt less frazzled, Less stressed probably would have been a lot happier. And what would you tell to people that are developing information, advice and guidance offers to people like you like, What do they need to know How What do they need to do different? They need to be patient with us
They need to think about the words that they're using when they speak to us again. They just need to basically just show a bit of compassion. Mm
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