The storyteller shares their experiences of information and advice in a London Borough, the impact on the care and support they recieve, and the inaccessibility of having to constantly chase and know what information and advice you need to look for.
The storyteller talks about calls not being answered, unanswered emails, and the frustration of people not getting back to them with the information and adivce they need.
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could you share with me a little bit about you and why you wanted to share your story about getting information, advice and guidance and support from adult social care? Uh, hello, everybody. My name is Jen. After getting stroke, I have been in a house barn and, uh, regarding my social worker from Harrow Council. I have never got any information which I'm supposed to be used in my daily use
There is a no social worker. Nobody is coming. They email me end of the year for what I have done in between whether I'm leaving, I'm having problem
Nothing. They are asking me no phone call. I'm not saying they should call me every day or email me every day, but at least in some time, like two months
Three months, they should ask. They are sending the progress report end of year. What? I shall fill it form and send back to them, which is in, uh, my mother tongue and in English
And when I replied, there is an email contact number is there. But even if you call that number, nobody is, uh uh taking the phone call. Even if you email them, nobody is bothering to reply Why? I'm emailing them
So I don't see any purpose of this council people when they want something. Then they call me what I'm supposed to do. What I'm not supposed to do
There is nothing. So I'm very confused. Even my sister next to King
Even she is confused because there is no any information. There should be 123 Plan one plan B ABC. They are stuck all like a on plan
B, they never move. Plan C and the alphabet of the 26 letter that I can say 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 2628
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 F from beginning email. If you write they Oh, we have received your email automatic reply, but the real reply
No do 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 by mistake. I do mistakes
So this is I want to stop these things to do. But it is keep repeating me because of, uh, they are not there for me. They say, uh, they will send me social worker when you need
But when you call, they say, OK, fine. We will tell you like I I call it is has been, uh, five months. I have asked for them to send me my blue badge
I told them I am ready to pay. I'm ready to do everything but five months. Nobody is bothering
I asked my blue badge early. At least one month because I don't want to get expired. Then I stuck at home, then wait for my blue badge
But they are not bothering. We will let you know. We will let you know
We will let you know. 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 even council
Nobody is sending. They are sending small. I can understand
Uh, election, They don't know about me. So they if they send me the small letter, I can understand. But GP NHS are, uh, place where they know about me
I'm partially blind. I can't read the small letter. They don't bother at all
Never. I told all the time Please send me the big letter. Uh uh
Letters to me. They say Ok, ok, we will send then when I receive again Small. Can I ask you what impact has this had on your well being? I In which way? What impact does it have on your mental health and your psychological well being? It hurts
I mean, I it is It is something. Yeah. It, uh it's I can't, uh, come out
You know, when I receive something like this letter or something, then I go back to the What happened to me? Maybe I'm fine today. Tomorrow. But let's say friday I get a letter
I have already came out from all this. But Friday when I received a letter and then I see the letter and I say, Oh, I can't read it. Then I go back to 2020
So all the time I'm going to be back to 2020 every now and then and even, actually, I have a problem in the night when I'm sleeping suddenly I will get a wake up because I'm going back to 2020 which is I cannot control myself, But daytime. I'm happy I'm watching TV. But then I wa I'm I'm out from that, uh, this, uh, problem
And then suddenly I received letter again. 2020. Tell me about 2020
What happened? Uh, I had a stroke and I was taken to hospital, and they, uh uh, not people. They didn't care about me and I left. They left me paralysed for life, and I was assaulted by even a ambulance staff
He dragged me from the second floor to the ambulance. The I have my finger, uh, was bleeding till now. It has not cured because I'm diabetic
So that, uh, finger will be like that every now and then. If I hurt, the blood is coming out, but that there is nothing no medication, nothing for that. They didn't because I'm brown person, You see, uh, we don't have value
It's only in the paper that Oh, we are looking for this person. But they are not. They are not at all
I can write a whole book on my, uh, this journey. What happened to me? Every step of that After 2020 it has happened like for example. Abuse, uh, discrimination
Colour based. I think that the researchers was researching on me with these old words. Harassment, bullying
Everything happened within this when I was in the hospital. Until a date still is going on, whether it is an appointment or GP. Same thing
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 supposed to send me all the documents properly, Which I can read myself from I don't want in my mother Lang language. I can read English. I'm not, uh uh stupid that I want to, uh, need in my, uh, language
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 if I want milk now, I can't go out to buy a milk. So this is the reason we I'm supposed to get all the information in advance, so I know that, OK, if I go out, I will buy more milk. Uh, because I can't go and buy on the weekdays when my milk is finished
This is just a small example. And you said when we had our preme You've got carers coming in every day. You've got a personal assistant
But you wanna be independent. How have they like what's your experience with the carers? Carers are good, but you see, they have their time limit because they have a lot of people other people to do. So they come
They give me shower. They gave me breakfast and they go. That is half an hour or 45 minutes
They are with me. Then whole day rest. I'm alone, OK? Or if they come, they do their part of work and they finish their lingo
I help my personal assistant. Very good kind. Everything
But it doesn't mean that he's supposed to come seven days a week? No. Then I will be very selfish. He has other job too
Because nowadays the jobs are very important for everyone. Everybody. So I don't want to become Oh, they should look after me
Only me only. No. They have time limit for everything, which I understand they understand
So other information council people doctors GP NHS They should understand what to give it to me. And what closing Have you got anything you would like to end this conversation with? No, I don't want I just want them to be very perfect. Like if they want me to be perfect, not do this
Don't do this. Then why? They are not everything. They are blaming me
If I do mistake, but what they are doing Do they care? They don't. Their mistake is my mistake. My mistake is my mistake
Why? Uh everything is coming to me only not to them. If I do some mistake, they will say, Oh, it's your mistake. If they do something mistake, it is
My mistake sounds really bad. And I'm sorry for those experiences. Anything else you wanted to share? Were you happy for me to stop recording? No, I'm happy
Mm. I'll start the company.