Life in lockdown, missing being able to hug, lockdown for disabled people is hard enough, imagine (DNR) do not resuscitate being another real life consideration while in lockdown. 

 

 

Okay, So who wants to introduce themselves first? Shall I? Well, first, what you want? What? What do you What do you want to just tell me what you want to know. Tell me your name and something interesting about you. How long you want for something interesting about me? Two minutes less than two minutes. Less than two minutes

All that could be a challenge. But what I will do my best, right? So my name is Vicky Booking jam. Something interesting about myself

Well, I'm a self advocate. Uh um Zumba instructor. Wonderful

And do you want to go next? Hi, I'm Jenny. I'm one of the direct directors of a South Africa C organisation based in the world called Together All available and one of the leads for South Africa seeing world. And I'm a member of the national co production advisory like myself

So we've pretty much got the same roles almost together. All are able. The only difference is Jenny isn't a Zumba instructor

That's great. Guys. I wanted to know, uh, how was lockdown being for you guys? Well, I spent the first two weeks of lockdown in self isolation

It was a and that was, I don't know what's the best way. It was lonely at times when literally only had my iPad and iPhone for a toy dog for company. Hired is low

And I guess after that is when it's sinking in a bit now held, to be honest, kind of what's going on. I'm sorry for start crying, but it's the social, social distancing rules of ready to eat. It's hard

Yeah, sorry, social distancing. It's not. It's not the lockdown, It's a social distance

And that's the worst of it all. Yeah, I agree. And this tape trip, taste, test and track

But they just introduced now isn't that easy? I don't think it's that easy to understand itself. If you tried the track and trace back and Jan not not not giving us access to that until later on. Later on in the month

Of course, it might not even work on iPhones or Android. We'll be a bit of a waste of it doesn't. But so what? What have you found? You know, you said about the social distance in So what? Have you kind of tell me what you understand of, like social distancing and how have you? You said it was challenging

How have you managed? What I understand about it is, um and you have to be as far away from people as possible, but no closer than two metres. However, managed with a bit of difficulty, to be honest, I mean kind of really missing the basics of things. Forget with people like giving them a hug or a handshake like I'm the only person I'm allowed to hug or have hugs off at

I mean, this is my husband. We all know, as Paul's just sarcastically said, Poor me, I you know, I try my best to try my best. Thank you

Let's just say the only thing that's been keeping one of the few things they've been keeping me sane at the moment is talking to people via the Internet on Zoom like I'm doing to you guys now all Microsoft teams or teams Or which which we've got to use tomorrow for a meeting. Indeed we have with the council. Indeed, they have well wishers

Look there, Isaac. I always wish you guys like great what we do. Jenny, how have you managed the social distance in, um, it's stopped It's really It was It was OK and it's just started to really sink in

And I have not seen Vicky for over two face to face it over three months. You're really starting to get me down. I'm like fed up with us

I want I want to. I want to see me mates. But now, even with this trip, taste, trip, take trap, test and trace

That's not easy to understand. And it's just just if you want to keep, stay, stay Wow, it's going to be longer for not seeing senior friends. They're all the government is saying, Oh, we want all this

We know what people weren't thinking for, but, oh, I went to a haircut or to see their rates and stuff like that. But actually, but actually, the thing is, is that after Dominic Cummings is thinking, we don't just stop pressing the pen because it's really after Dominic Cummings would going breaking, potentially breaking the rules. How can we trust our How can we trust the government now? You know you're talking about the rules and stuff you guys still working, doing all of this stuff around co production and the house that how are people? So I'm wondering how the kind of people you support and making sense of lockdown and covid 19

Um uh, the thing is, is that we've encouraged some of the some of the guys to use use assistant assistant technology like like Zoom, um, like like Zoom and Microsoft teams. Because just before we went into lockdown, when the when they first announced the the the what, they locked down. I had to set up one of our colleagues up on Microsoft teams because they were supposed to be a meeting on it and it didn't happen

But because he's on it, it's actually been worked is being he's able to get in, He's he's able to go to meetings and meetings on Microsoft teams, but a lot of self advocacy. A lot of lot of people are actually only just realising that we've got to have set up on teams and zoom, particularly for councils and CCGs. And I don't think some of the self advocacy groups are prepared enough for it

We're being told Oh, you're you are unique. I might go. No, I'm not

We're not unique. The thing is, is that Is that the South advocacy groups have got some. I've got to be prepared to use teams

Anzu because the thing is is that local authorities and CCGs are using Microsoft teams because for them, it's more secure. Microsoft, Microsoft teams. In my own experience of it, I'm actually really struggling to get my head around it

And some people, a lot of people calling with a fairly turkey savvy. I'm good with most most UPS and that had bought Microsoft teams. Even I'm offering a real problem

Get me out around. You'll find Zoom. Zoom pretty much mastered most of it by now

I mean, I still wouldn't call myself a true experts about it, but I've mastered most of it, and that was pretty easy. Teams is another matter. There is probably one of the most inaccessible video apps I have ever used in my life that says a lot

Are there any sighting bits of work being involved in it? Uh oh, gosh again. Do you want a big lit? I do want to hear about everything that you guys are doing because I know it's so great. Well, the most obvious

Um, well, two of the most obvious and most successful ones so far, uh, working alongside Jenny and getting various self advocacy things going on. Uh, Rosenberg Gold Online seems to be proving successful as well. I've had quite a few people make contact with me just this week, actually, by asking, can we burn 100 borrow you for some online zumba? So proving very popular, they in terms of co production, the online coproduction training that Hasker Limited doing, obviously because it's done online

And that went ahead. Um, since lockdown, we've had two sessions of it. Um, they have been pretty successful

Well, I thought they were quite successful. It was quite positive feedback from that. So, um, I guess thanks to the Internet, if you you like, it's almost business as usual

Not quite, but I'm almost Jenny. You want Vic? The go quiet is because of them getting emotional also. Um, so I apologise

We can stop at any time like I said earlier, but that's all right. Just give me if I go on music because I'm just trying to pull myself together. So say that was great to hear about using teams, and we're not great

The team's isn't so user friendly. So, Jenny, the work that you're doing is any of it like covid 19 related or not Down related, um, as a as a look. Um um, as there's there's been a meeting that mean Vickie has been involved with that Joanne Andrew Lee from People First and Philippa do honest on a, um, on Wednesday on Wednesday after afternoon that we that we're involved with online metre, Yes

So do you think people are still co producing? I I don't I don't I don't I can't I can't really say yes or no. So that to be honest, because it's we don't, you know, it's well, I just feel sometimes I'm so in the dark about some of the stuff that's actually going on the community. Actually, I think the communications gone, gone, gone to the dogs dogs, actually, so do you think that people aren't getting information and didn't need to get about co production? Nobody really shares what they're doing about on the co production

That's not that's not what I think that is not a reflection on t lap in any way shape or for I'm just saying in general co production coproduction information and what they're doing around Cone production is non existent. It's been forgotten about because everybody is so busy with covid 19 or coronavirus and all these talk about do not D N r orders do not resuscitate these orders isn't exactly giving me much survivor. And that's not just people learning disabilities

That also goes for older people. Yeah, that was shocking. Really shocking

I mean, I was really upset by that. And who isn't in terms of the work? So how did you find out about all of those, you know, resuscitate orders? And I thought I saw the the what? The the older people's one on the news, but actually about the learning disabilities one. I actually, I actually eventually it took took a bit of a while, but I actually saw and somebody retweeted a tweet from the CEO, avoid your care

The CEO that actually tweeted out how disgusted he was that people in his in the care of his, uh, organisation, we're actually being given blanket do not resuscitate orders. And he was treating up. His disgust with that particularly worries me about people with learning disabilities who might have all or manner remains of health conditions as well

To be honest, I mean, uh, if any of them, there's a few members of my family of Paul's family that fall probably fall into that category easily. Uh, if they're unlucky enough to catch the coronavirus and they need to go into hospital because they when they could potentially, seriously enough that they could die from it. Uh, from what, uh, first, are they in danger of getting a d n a

Or on them? Um, basically being being left to die. I think we've all had very similar concerns. Really

Not a good position. Not a good thing, really. I really hope it never happens and that if they if the worst does happen and they are threatening to put a d n a r on that, I would over me or Paul would be consulted, and we could challenge them on it

But it is, but it is really a big worry, but I did actually note a notice. It was also on the new news, of course, but but week or two ago that one of the one of the families that was on the news talking about do not resuscitate orders had actually said to the doctors used every action necessary. And the point is that when she said that, he didn't think it meant a d n a any any in and use all the in in in what's the names possible, which she didn't realise that that one of them would be the end

Do not was so something which I think was a bit of a It's just silly. It's just silly. The This that is, if you're talking about that article that was on the BBC news Jan, I saw it as well

Um um, it seemed to me like they were going around the houses, but in the background, they were asking Think Banks, can we put a d n A notice on this person's note, even though how it Laden later had turned out? Turned out the if they ask that question directly. Well, hold the answer would have been an absolute straight No, no, no, don't put it. Don't put a d N A on my notes on this person's nose it in interventions

That was it. Use all the interventions available. What she didn't actually realise when she actually said that today and include a do not resuscitate order

Do not resuscitate order. Shouldn't have been put on anybody unless they've exhausted all of her options and the person is definitely gonna die, right? Right. That is the only time it would be accessed

Some acceptable to put a d n r notice, but not otherwise. Uh, people who are, however, with in this movie are getting it and are recovering, which is good. More people recover from it than die from it

My sister, my sister add it, Um, and she's fully recovered now, Uh, one of my cousins had it, and the last I heard is he was on the mend, so we can only presume he's a lot better. Now I'll need to message me, auntie, and check about that. But then both my sister and my cousin, As far as I know, I don't have a disability

You're any underlying health conditions. But if they did have any underlying health conditions and they, um, they tested positive for coronavirus and when they had to go into intensive care, if they didn't have a disability, then they would do the resuscitation if it was needed. But if they had a disability, would they say Sorry

No. D n a terrible. I'm just I'm sorry I keep going on about it, but it just terrifies me kind of finger

But what's going on? It's not I don't think it's in every case, but I do think that it is It is a risk. Yeah. It's a risk that really is frightening for a lot of people

Moms, dads care as as well as the people themselves. Yeah, it really is if I am lucky enough to get the virus, which I hope it doesn't. But if I am unlucky enough to, uh, it's obviously on my records that I have autism and learning disabilities

And would they put what they put a d n A on me? Has anyone spoken to you about it? No. Oh, but if anyone did and I would. I look, and I do not want you to put a d n a r on my record

Um, you only do that as an absolute last resource. Yeah, And the only way I'm literally on the last breath. And how do you do? You put a d n a on me, Jenny

Hmm? Yeah. How so? this is you've been keeping up with lots of news and stuff. So you you So you mentioned that you saw this dinner offering on the news

Do you Have you found all the news? Because I found it really overwhelming and confusing. Some of it has been really depressing. Actually, some of it, yes, has been depressing

But I think that that that that lately what's actually happened is is that is that more things have been in the news. More things have been dominating the news than just coronavirus, which actually, I think it's been quite helpful. I'm not sure and actually getting people to think

Oh, it's not just business because at the middle of the middle of it, it was like everything. Everything. Everything was about coronavirus

Everything was about coronavirus and actually trying to find any news that wasn't coronavirus. It wasn't easy. Although I did go on to our actually to be quite an innovative innovative as I am, I actually went into the BBC sports app and found some found some stuff that wasn't coronavirus related stories about sport

Yeah, so I was also, like, wondering like you. So I know you guys and I've always found that you're really, um, very forward in terms of kind of connecting digitally. So have you used kind of Facebook and other ways of connecting with people or keeping yourself, um, kind of busy doing lockdown? So because I know like, youse lot, you, both of you guys are just so good on social media, Facebook zoom teams, God knows what

Let's just say hey, the Internet and telephone above. The only way we keep it going, um, it's enabled us to adopt a relatively business as usual approach. Not fully, but but just but just about almost business as usual

And we had to stop virtually all all the whole of face to face stuff. We stopped moving nice and no, no. And then there was there was some there was there was some voices that were saying, No, we need we need we should we should We should not do stuff

And I went No, we are doing something. We are doing something about this. And eventually we got to the position that I ended up doing all ended up doing most being Vicki just ended up doing most of most of the odds and sods

And actually, one of the outcomes of actually doing all that is now we have a coffee morning, every two coffee event, every two every two weeks that you want. Anyone can join up and down the country. Your coffee event? Um, well, I wouldn't say it's our true coffee

Morning style was usually they're open and we provide teas and coffees and or coffee, and it's gone on. But obviously I can't go deliver teas, coffees and scones. One round of people's houses, especially if they don't live on the women rule

Also, I would describe it probably more like a coffee and ketchup kind of kind of thing, like, and they've been success successful. We've had someone from Grantham join us before now, huh? Um, didn't we have no visibility? Concern coming? Always are that they're always at that. There's even some of the songs, advocates, the outstanding leader

She's so bored that she's actually keeps asking for links and stuff to do, which I think is absolutely for me. I'd rather have somebody that's absolutely begging to do things and get involved in some shows. You just shows you our board

She is. I mean she's asked me for the I mean, she actually rang me earlier on today. I when I went out for a bike ride, I just asking our was and I'm not

And I was asking how she is. So And he's asked me for the link to Zumba on Friday, which, of course, have sent to her somewhere. Bet Zumba on Fridays

Uh, Zumba on Fridays. It's pretty much like the normal Zumba class. The only difference is we're seeing each other through screens, right? And but still held the same old number music, and I still know how to work

You are. I believe you may. I can throw a few fast ones in there, especially after learning a couple of new song rhythms only a couple of days ago

Uh, it's pretty much as we're doing now. So I see you through the screen and, like, vice versa. Obviously a difference being I'm not sitting here

Uh, I'm standing and I'm saying this is how you doing? How you doing? Yeah, for me, that's been a bit of a challenge bench of Look at me, I suppose, brought the challenge of its own. I mean, normally, I mean last Friday. I had the class with him

Jenny was like join English. He had something else on. So I had to keep an eye on who wanted to come in and who wanted to come out as well as keep an eye on what what the class was doing and make sure I was teaching

Correct. Got me moves. Correct

So, yes, it's an opportunity. But it does bring with its own challenges as well. But, uh, I must join one of these glasses

Vic, you can come and join in on Friday. Friday, often. Friday morning, half 10

More than area. And thats could actually be match, actually, advertiser on his behalf, Which is good. Yeah

True coproduction spirit. Really meet a match have gotten Got the people. They've got the advertised rising means Well, I've got some people on advertising means as well

Oh, so, um, so we work together, and, uh, and off and off turn the music on and off we go. We've got about another five minutes. Is there anything that you want to say or add? Thank you so much for being, um really considerate

Thank you for bringing the really horrible thing around the deer not resuscitate, um, and learning disability. So, yeah, I'm just wondering if you wanted to add any think, but I think I think there's positives coming out of this as well, because one of the people that that we actually we, me and Vicky had asked to make self advocacy happened virtually 10 years ago has actually come back into the fold again. Become it's gone from a non active member, it to or not to an active member quite quickly, which, and I think that's a testament test on foot is to do with coronavirus

But I think it's also a testament to how determined they determine mhm. That person is Vicky, you're a mute. Do you want to say anything before we Yeah, sorry, I was muted myself and well, while our port while our falls on the phone

I can't really think of anything to add, but all I'm gonna say is the moral of this story is, don't give up, thank you. Don't give up where there's a will. There's a way

You know why you're always welcome to join some of some of some of the activities, especially if it's open, open ones. Well, you know, Vicki talked me Zumba when we did the pride march, didn't you, Vic? And I have to say my body was feeling it the next day. I can imagine, But then that's a job Well done

As far as I'm concerned, if people are feeling it and muscles and that I'm gonna Paul, I'm gonna stop the recording now..

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