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Lockdown: The anniversary no one wanted

Reflecting on a year in lockdown with Nikki Fox.

The UK has just marked one year since it officially went into its first Covid-19 lockdown. It鈥檚 the anniversary no one wanted.

On this episode we discuss the highs and lows of those 365 days for disabled people across the country.

Nikki Fox, the 麻豆约拍鈥檚 disability correspondent, has spent the past year finding out how disabled people are managing in the pandemic and practicing her ukulele.

She鈥檚 joined by Jonny Benjamin MBE, an author, vlogger and mental health campaigner who talks about the rollercoaster of emotions the pandemic brought up for him, and how he ended up in a psychiatric hospital in the middle of it.

麻豆约拍 Ouch producer and mum Emma Tracey chats about doing the online shop and what lockdown鈥檚 been like for blind and visually impaired people, while writer and campaigner Ciara Lawrence reveals what the pandemic has been like for people with learning disabilities - and why she wrote to Boris Johnson.

Presented by Nikki Fox.

Produced by Keiligh Baker.

If you鈥檇 like to get in contact with the team, email ouch@bbc.co.uk.

You can hear our latest podcast by saying 鈥淎sk the 麻豆约拍 for Ouch鈥 to your smart speaker, plus you can listen and subscribe on the 麻豆约拍 Sounds app.

Release date:

Available now

39 minutes

Lockdown: The anniversary no one wanted

罢搁础狈厂颁搁滨笔罢:听

NIKKI -

I鈥檓 going to go for it. Are you ready?

KEIRA -

Yes.

NIKKI -

Are we all ready, gang?

EMMA -

Yeah.

JONNY -

Yeah.

NIKKI -

All right. Let鈥檚 do it, let鈥檚 do it.

[Music]

NIKKI -

Well, it鈥檚 definitely the anniversary nobody wanted, or even expected. This week marks one year since the United Kingdom officially went into its first COVID-19 lockdown, but some disabled people, particularly those that fell within the high risk category, had already been shielding, or taking extra precautions for weeks. I鈥檓 Nikki Fox, the 麻豆约拍鈥檚 disability correspondent, and I spent the last year finding out how disabled people are managing through the pandemic. Taking my own disability into account, muscular dystrophy, and dyslexia, just in case anyone鈥檚 interested 鈥 it鈥檚 not like I don鈥檛 bang on about it enough 鈥 I can safely say that the last 365 days or more have not been easy for anyone. So I thought I鈥檇 sit down, grab an espresso con panna, because I am that person, and have the mother of all debriefs with three people from across the disability community. So let鈥檚 meet them. First up, Jonny Benjamin, MBE is here. Hello Jonny, how are you?

JONNY -

All right. Yeah, yeah, I鈥檓 good. Thanks for having me on.

NIKKI -

Now, Jonny is an author, blogger and mental health campaigner, best known for Find Mike, which was a social media campaign, searching for the stranger who talked him out of taking his own life. Now, Jonny does lots of work to raise awareness of suicide and mental health difficulties, something we know many have struggled with during lockdown, so I am sure he鈥檒l have plenty to say about how the year has been. Emma Tracey is here.

EMMA -

Hello.

NIKKI -

Ola, Emma. How are you?

EMMA -

I鈥檓 all right thank you. Good.

NIKKI -

You see, now Emma鈥檚 normally in my ear when we do these things. You鈥檙e normally doing producer.

EMMA -

Yeah.

NIKKI -

It鈥檚 her job on the Ouch podcasts, but this time she鈥檚 chatting about what lockdown鈥檚 been like for blind and visually impaired people like herself. So this is kind of new for us, Emma.

EMMA -

Yeah, we鈥檙e on the other sides of the fence today. And, you know, I鈥檓 a little bit uncomfortable, I want to talk, I want to say the intros and the outros and things, but actually it鈥檚 really nice to sit back and hear you do it and hear Keiligh producing as well. And I鈥檝e been living my own blind-y lockdown, but also talking to lots and lots and lots of people about theirs as well, so it鈥檚 something I can certainly talk about.听

NIKKI -

Perfect. We鈥檝e also got writer and campaigner, Keira Lawrence. Hello, Keira. How are you?

KEIRA -

Hello, Nikki. I鈥檓 very well. How are you?

NIKKI -

I鈥檓 very excited about this because we follow each other on Twitter don鈥檛 we?

KEIRA -

We do.

NIKKI -

And, you know, I sort of speak to you a lot and it鈥檚 lovely to finally actually get to interview you. I鈥檓 really excited about this. Now, Keira works as a campaign support officer for Mencap and has been advocating for people like her who have learning disabilities for many, many years now. Thank you all so much for joining me. So what about you guys? You haven鈥檛 been shielding but I鈥檓 guessing lockdown has thrown up some interesting disability related stuff for you? Shall we start with Jonny?

JONNY -

Gosh, where to start really, where to start.

NIKKI -

I know.

JONNY -

It鈥檚 been just a rollercoaster. I think that鈥檚 the right word for me and for many others, is just a rollercoaster in terms of mental health. I know so many people that have had really, really, kind of really low points, and then, you know, maybe better points, but lots of low points, lots of anxiety. For me, I know lots of people that perhaps haven鈥檛 struggled so much before with their mental health, this year have said that they鈥檝e really struggled. And yeah, it鈥檚 really tough, people just don鈥檛 know how to cope. For me, I started off, the first lockdown I was doing okay, and then I had a breakdown in the summer in the break between the lockdowns and I ended up in hospital last September, which was really tough because of all the restrictions. And especially being in a psychiatric hospital and having all these restrictions. I couldn鈥檛 leave my room for days in case I had COVID. They had to test me.

And that was really hard being confined to this small room when, you know, your mental state is already鈥 I was in a bad place and I found the hospital really challenging, and then my sort of recovery since has been鈥 I mean, I鈥檓 in a better place now, but yeah, it鈥檚 been tough. I need people around me when I鈥檓 not in a good place. I need people to support me, I need connection, but I didn鈥檛 get any of that obviously in the hospital, or even out of the hospital.

NIKKI -

God, that must have been really difficult for you. It鈥檚 a double whammy almost isn鈥檛 it, being in hospital during that time. Do you feel that you ended up in hospital because it was all compounded by the situation that we鈥檙e in now?

JONNY -

Yeah. No, definitely. I mean, to be honest my diagnosis is schizoaffective disorder, a lucky combination of schizophrenia and bipolar, and I really noticed the paranoia really taking over during lockdown as we went on and on. And I鈥檇 get so, so paranoid about germs. You know, I鈥檇 always disinfect, like, the disinfectant. Yeah, I think I lost it a bit, especially actually when we came out of the first lockdown and we started to see people I was even more paranoid about the germs because I was starting to go out and I was like, what if other people haven鈥檛 washed their hands and I鈥檓 touching something? And it kind of took over my life actually. Yeah, it really did. And then obviously I became unwell. But, you know, I took a step back from everything and I took a few months off and that definitely helped. A few months away from media, social media, I think that really actually helped.

NIKKI -

Keira, as well for you, I know a lot of people with learning disabilities have been struggling throughout the pandemic. I mean, we鈥檝e covered a lot of stories that have impacted people with learning disabilities. How has this whole year been for you?

KEIRA -

It鈥檚 been up and down. It was strange actually, because on 16th March I went into work in London to the Mencap office and everything was fine. Normal day, everything was going clockwork, and I was, like, oh it鈥檚 going to be a great day, everybody鈥檚 here, blah, blah, blah. And, like, happy as Larry, and then literally an hour later I was told to go home because somebody in my team was at home with the possible symptoms of COVID. So I was sent home out of safety. So then two weeks passed and I was like, okay, maybe I have to stay home a bit longer, that鈥檚 fine. And then I got furloughed right at the beginning of April until the second week of June, and then I was invited back to Mencap for a special secondment job and my job from June to January this year was working on making all the COVID guidance, government speak, into Easy Read to get it out on our website, our social media, all our comms. So that was very challenging but I really enjoyed it and I worked with lots of fab talented people in Mencap to do that. And then in January this year I got an internal promotion job, so I鈥檓 actually now their plan engagement lead in the transformation team at Mencap. So, yeah.

NIKKI -

Oh, Keira. Amazing. Do you think in some ways though the whole year has been slightly easier for you because you鈥檝e been so busy?

KEIRA -

For me, I think at the beginning when I was working I was happy because I was doing something I loved and I was doing something that I cared about, but the first day of being furloughed I literally sat on my sofa in my PJs while watching my husband go off to work, because he works in a Royal Mail depot, I literally cried. I think I spent the first week just going, what do I do now? I don鈥檛 know what I鈥檓 meant to do. I don鈥檛 have anything to do. I can鈥檛 have anybody round to comfort me. It was really hard. When something that you love is taken away from you it was really, really hard. And I remember just one day going on Instagram and I did the live thing on Instagram, and I just sat on Instagram crying to my friends, going, 鈥淧lease someone, just talk to me. I鈥檓 on my own. I feel so isolated.鈥

And, like, so many people responded and were so lovely, and so then I kind of pulled myself together and I was like, right, I need to do something practical now, I need to kind of cut myself off from this, and so I did some volunteer work for some of the other charities that I have roles with outside Mencap. And actually, once I had that and I had things to do it got easier, but I think for the 1.5 million who live in the UK with a learning disability not everybody is as lucky as I am. I have a voice and I can use my voice, but some people don鈥檛 have a voice and it鈥檚 been really hard. People have been at home, not being able to go out, not being able to understand the guidance, it has been a really hard year for people with a learning disability. So I鈥檓 looking forward to being able to see the day when we can all go out and we can all celebrate and be together. That鈥檚 going to be amazing.

NIKKI -

Ah, and we can dance and we can chink glasses and we can give kisses... [Laughs] Right, I just went off on one. I got lost then. I was in a club in Ibiza somewhere. Emma, obviously I know you professionally, I love and admire you very much, but on a personal note how has this whole period been for you?

EMMA -

I think in a lot of ways it hasn鈥檛 been a huge amount different for me than for someone who isn鈥檛 disabled. I mean, the first lockdown, myself and my husband were working full time and we had two small children at home because one was not in nursery yet and one, the nursery was closed. And I think it was just, it was really, really intense, and actually with Ouch we鈥檇 just started Cabin Fever which is our strand of podcasts where we talk about COVID-19 and the lockdown and how it affects disabled people so, you know, we were really pushing to get as much sort of disability stories out there, as many people鈥檚 voices heard. So it was busy at work and busy at home.

And then I guess, as with everybody, things changed over time and the kids went back to school and then they came back home again. And something I鈥檓 really looking forward to is a bit of time by myself, because it鈥檚 not鈥 I heard someone say the other day that there are two different types of people in lockdown. There鈥檚 the people who are really genuinely and understandably lonely because they鈥檙e living by themselves or with one other person who goes out to work, as Keira is, and then there are the people who鈥檝e got a house full and nobody can go anywhere and nobody can leave.

So I have to say, one of the things that鈥檚 been interesting for me is that there hasn鈥檛 been as much of that drip, drip, drip disability discrimination as before lockdown. So, you know, not as much chipping away that, you know, when you meet someone on a train station or you meet someone in a cab and they鈥檙e asking what鈥檚 wrong with you and they鈥檙e being unintentionally, usually, discriminatory or just not thinking and saying things that kind of chip away at you all the time. So I was out with my husband for a run and he was guiding me the other day and someone shouted out to him, 鈥淥h, I respect you, sir!鈥 And I鈥檓 still thinking about that a week later because it probably would have happened to me four or five times a day before when I was out and about and doing things, but this happened a week ago and I鈥檓 still thinking about it, you know.

NIKKI -

How鈥檚 it been as well with, like鈥? Obviously you鈥檝e not been going out and about. Well, none of us have been going out and about as much, and obviously when you鈥檝e got sight loss or you鈥檙e visually impaired does it make you almost鈥? Do you get a bit nervous. Do you get anxiety at the thought of actually coming out of lockdown and actually getting out and about more?

EMMA -

Yeah, I do. So not just because of the chip, chip away, but also because of just mobility. You know, I actually was matched with a guide dog and trained with them for seven weeks and then it didn鈥檛 work out because the dog had been in lockdown from once before it came to me so it had kind of got used to being a pet [Laughs] and not going any work. And most of the training that we would usually do we couldn鈥檛 do, so we couldn鈥檛 go into shops and we couldn鈥檛 go on buses and that kind of thing. And it was really stressful, so that kind of knocked me back a little bit, and my old guide dog died as well, so that was difficult.

But also, you know, I have to touch everything all the time and I have to get guided. If I do take public transport or a taxi I need to be guided by somebody I don鈥檛 know and I don鈥檛 know where they鈥檝e been. So I have lost a lot of confidence and I do tend to let other people take the kids to school or to the child minder. And I鈥檓 not proud of that but I鈥檓 hoping that when things open up that I鈥檒l sort of鈥 I鈥檝e never been brilliant with getting around by myself, but I鈥檝e got high hopes for when the kind of new normal arrives, if it ever does, for getting some of my confidence back in that regard. And you have so many strategies as a blind or visually impaired person, or as someone with any impairment, you鈥檝e got so many strategies that means that people don鈥檛 actually realise that you鈥檝e got a strategy. And people don鈥檛 realise that you鈥檙e getting around something in some way.

And one of the big things that I did in the house was the online shopping and that was one of the big contributions I made, and then all the slots were gone. And I did something that I鈥檝e not had to do before, I rang the supermarket and I put myself on a vulnerable list, so now I get the vulnerable slots, so I get a slot a week to get my shopping. And, you know, it鈥檚 not something I鈥檝e ever had to do before, it鈥檚 not something I鈥檝e ever thought about before, but it was weird, like, sitting on hold and then the person coming on and having to say, 鈥淲ell, I鈥檓 blind and I can鈥檛 do the shopping myself,鈥 and tell this random person in a call centre my life story. And I鈥檝e got two small children and they鈥檝e got allergies and I need to know the ingredients and I need to be able to read them on the website. So yeah, it was a bit of a鈥 It felt difficult but I think I would do it again and I probably feel a bit more comfortable about putting myself on such lists now because I鈥檝e done it once and it's helped me a lot.

NIKKI -

It鈥檚 kind of a means to an end isn鈥檛 it really?

EMMA -

Yeah.

NIKKI -

Yeah. I just wondered what you all thought, because obviously shielding鈥檚 coming to an end now on 1st April, but there was some research by Scope which showed that 75% of disabled people do plan to continue shielding after the second vaccine dose, which, you know, means many months more of isolation. I mean, Jonny, coming to you. I suppose you weren鈥檛 shielding, shielding, I imagine, in the period that鈥檚 just been, were you?

JONNY -

No, I wasn鈥檛. But interestingly, I鈥檝e spoken to lots of people about the transition out of lockdown and there鈥檚 so many different views. And actually there鈥檚 quite a few people I鈥檝e spoken to who feel very anxious about coming out of lockdown, that transition. And I鈥檝e spoken to other people and they鈥檙e not so empathetic, and I鈥檓 just like, be kind. As we always keep saying, be kind, you know. If someone doesn鈥檛 feel ready or comfortable, I think I鈥檓 concerned that people are going to put too much expectation on other people. You know, 鈥淵ou should be out now. Come on, come out,鈥 you know. Or if you don鈥檛 feel ready or safe yet to come out, to transition out that鈥檚 absolutely fine, we need to be respectful of that.

NIKKI -

And it varies very much like it does with all kinds of disabilities and all kinds of mental health issues doesn鈥檛 it?

EMMA -

Or to go into a workplace as well, you know, to be back in the office. Some people have found that not being in the office has been a massive benefit, but also they鈥檙e worried that they鈥檒l be called back in when they don鈥檛 feel safe yet.

NIKKI -

Yeah. And I guess when the shielding ends, when official shielding ends, that kind of protection goes doesn鈥檛 it? So, Keira, I was interested as well about how you feel about the whole shielding coming to an end on 1st.

KEIRA -

It is really important that people with a learning disability can get the support they need to come out of lockdown safely. And obviously, I wasn鈥檛 shielding, but I have been at home since 16th March every day since. The only times I鈥檝e literally been out are the supermarket with my husband, food shopping, having a socially distanced walk with my mum, apart from that I鈥檝e literally lived within these four walls of my flat. And I feel like I鈥檝e shielded. Even though I haven鈥檛 officially shielded I feel like I鈥檝e been shielding. [Laughs]

NIKKI -

Yeah.

KEIRA -

And actually it was really lovely because last week I actually saw a friend of mine out for a socially distanced tea and cake outing, and I hadn鈥檛 seen him for a whole year and it was so nice. And I was like, this feels like a new normal, it feels nice.

NIKKI -

Let鈥檚 move on quickly to chat about the V word. I鈥檓 talking, people, vulnerable. We鈥檝e got a clip from Ouch鈥檚 Cabin Fever podcast which has been brilliant, with the gang talking about the initial way people were told they were vulnerable.

[Clip] So the text that I know my friend who has a condition got, 鈥楴HS coronavirus service. We have identified that you鈥檙e someone at risk of severe illness if you catch Coronavirus so you need to remain at home for the minimum of 12 weeks. 麻豆约拍 is the safest place for you. Staying in helps you stay well and will help the NHS too. You can open a window but do not leave your home and stay three steps away from others indoors. Wash your hands more often for at least 20 seconds. Read more advice here鈥.

鈥極pen your window鈥. I think the advice is confusing as well because I thought that if you walked for half an hour somewhere where there were absolutely no people then that would be okay, but that text sounds like that鈥檚 not the case.

NIKKI -

Blimey.

EMMA -

Gosh.

NIKKI -

Yeah, I know. The whole kind of extremely clinically vulnerable, you know, the list, the whole kind of name, it鈥檚 a mouthful, it was always going to get shortened to vulnerable unfortunately. It鈥檚 a shame it wasn鈥檛 just shortened to extremely. Ha, ha. [Laughter] But it turned out to be such a controversial time, and I know for me in the job that I do I always keep a check on language and the way that we use it and I always think, particularly for people with learning disabilities as well, Keira, correct me if I鈥檓 wrong but, you know, we need to use an empowering language, we don鈥檛 need terms like vulnerable.

And it鈥檚 funny how it very quickly, you know, it was a shorthand for anybody with a disability and I was noticing it more and more and I became very grumpy and started sending off emails to people I didn鈥檛 even know about it. I am completely aware that not everybody is familiar with disability or has anybody in their life that鈥檚 disabled so might not get it but, you know, it鈥檚 like, come on now people, like, just because someone鈥檚 disabled does not mean that they鈥檙e vulnerable. But it was amazing how many times I had to say that. [Laughter] But, Keira, from the learning disability aspect language is so important isn鈥檛 it? I mean, don鈥檛 get me started on the amount of times I have to pull people up when they say learning difficulties.

KEIRA -

Yeah. So learning difficulty and learning disability are two very different things. So learning disability is lifelong, there鈥檚 no cure, you have it your whole life. You can鈥檛 take medicine, that鈥檚 not going to happen, you have it your whole life. So it鈥檚 the way you learn, understand and communicate, and it鈥檚 about, actually, if you have the right support around you, you can achieve, and we can all achieve with the right support in our lives, and I think everybody has a certain type of disability in their life, everybody finds things hard, but when you have a learning disability it鈥檚 understanding information, it鈥檚 communicating, it鈥檚 finding new things hard. And during lockdown I certainly found all the guidance really hard to understand myself. I had to explain it to my friends which was an enormous challenge, but I ended up doing it. And for people with a learning disability the government were very, very slow to put accessible information out right at the start of the lockdown. They left it to charities like Mencap to do it.

And even at Downing Street briefings, I can鈥檛 count on my hands the number of times I watched those and I was literally tweeting, 鈥淵ou are talking jargon. You are using big words. I ain鈥檛 understanding you. Nobody鈥檚 understanding you.鈥 And I wrote to Boris Johnson and I said, 鈥淟ook, please, please, please can you make them accessible, because you are cutting out a whole community of people,鈥 and they just said, 鈥淐harities should do it. Charities should be making them.鈥 And then I got invited to talk at a parliamentary meeting about it and then I was invited on to a group in parliament online to talk about it and I raised my voice.

And I think they have really tried now. They are starting to do it, they are trying, but it鈥檚 a bit too late, they should have done it from the beginning. And no wonder people with a learning disability didn鈥檛 understand about social distancing, like, even my mum, when I was out with her having a walk one day she had to remind me because once I got quite close to somebody and my mum was like, 鈥淛ust move out the way,鈥 and I was like, 鈥淥h, okay.鈥 And I think had I had really accessible guidance and rules given to me from the start by the government I could understand them much better but we didn鈥檛 have that.

NIKKI -

And I鈥檓 just wondering, Jonny, from your perspective?

JONNY

Again, I feel like Keira, the government has started to talk more about mental health but it鈥檚 come too late. You know, at the very beginning they should have realised that mental health needed to be a priority, or mental health support needed to be a priority. I mean, if you look at the stats now, so for example, CAMHS, the Child & Adolescent Mental Health Service, are now seeing the highest level of referrals on record. So many people are needing mental health support. It鈥檚 always the same, it鈥檚 so reactive, you know, why can鈥檛 we be more preventative? I know a lot of people that were really struggling with, you know, again, things like the news, having to watch the news and the briefings and the type of language that was being used.

NIKKI -

And talking鈥 I mean, I suppose moving on to lockdown and loneliness really, I mean, we know that 57% of disabled people who live alone haven鈥檛 seen anyone outside their support bubble since the pandemic began, 20% haven鈥檛 seen their support bubble, I mean it鈥檚 difficult isn鈥檛 it?

JONNY -

Loneliness. Yeah, that鈥檚 so tough. And actually, we鈥檙e seeing younger and younger people struggling with loneliness, particularly, you know, I have a youth mental health charity called Beyond, and we were hearing from so many, particularly actually really young children or rather, we were hearing from parents actually about their four year olds, their five year olds, six year olds, really struggling with that loneliness, because they were away from school, they were away from their teachers, away from their friends. You know, we were hearing from parents that were having to juggle, you know, Emma, you talked about it, you know, having to juggle home schooling with working themselves and trying to look after their children. We know that children and young people, you know, their brains are developing and they need social interaction, or a lot of them need social interaction, they need to be outside in nature, having play, being creative, and that was all stopped when children were having to stay home. And the loneliness became a real issue. I mean, we鈥檝e seen a massive rise in texts to Shout which is the kind of text service that a lot of young people use, a massive increase in texts, particularly focused on loneliness actually.

NIKKI -

Really?

JONNY -

Yeah. So many people, so many young people, and actually what worries me is, again, the lasting impact from that. So I鈥檝e been speaking to some schools that are saying a number of pupils haven鈥檛 returned to class, they鈥檝e lost so much confidence and so much kind of self-esteem that they haven鈥檛 actually returned to school.

NIKKI -

Now, I was going to just move away slightly. What we鈥檙e looking into at the moment, it鈥檚 very distressing for many families, but we鈥檝e heard a fair bit now about do not resuscitate orders. So as I鈥檝e learnt a lot, DNA, CPRs, do not attempt CPR, and it鈥檚 best to use the official term, but we know that they鈥檝e been inappropriately placed on disabled people during the pandemic. Let鈥檚 hear another clip from Cabin Fever. Here鈥檚 Baroness Jane Campbell talking about this issue.

[Clip] Within this pandemic there have been some very worrying issues emerging. One of those was the do not resuscitate conversations that GPs were having with disabled people. Whether we should or shouldn鈥檛 go on ventilators. Should we stay at home and not go to hospital because there were fitter, more able people to help first. And it was all about survival of the fittest. And some of us got together and we wrote an open letter saying, 鈥淗ey, hey, hey, stop all this, you can鈥檛 do this, this is discriminatory,鈥 and actually, you know, to give them their due, the NHS responded within a week, basically mirroring what we said in the letter and it was sent out to all NHS trusts.

NIKKI -

I mean, Baroness Jane Campbell鈥檚 been phenomenal throughout this pandemic. I know because I鈥檝e spoken to her a lot, and I know how much work she鈥檚 been doing and we鈥檝e spoken about this very issue. We have got something more concrete now because the Care Quality Commission released their report last week and whilst it wasn鈥檛, I think, as thorough as many people had hoped for, they did find that more than 500 cases where do not attempt cardiopulmonary resuscitation decisions had been made, CPR decisions had been made, without the family or the person being informed of it. So, you know, it鈥檚 awful really. I mean, particularly for people with learning disabilities. Keira, if I could bring you in here, because I know that I have spoken to a lot of people who are concerned because they support somebody with a learning disability and they鈥檙e concerned that if they go into hospital they鈥檙e not generally going to get the overall healthcare and the treatment that they need and deserve. What鈥檚 your take on it?

KEIRA -

Well, before the pandemic people were dying needlessly in hospital because they weren鈥檛 getting the right proper care they deserved. During the pandemic people have struggled to get the healthcare they need and they鈥檝e struggled to get support and reasonable adjustments. I don鈥檛 think I can comment on DNRs, but I definitely think that healthcare professionals need to have the right training in order to support people with a learning disability, and we鈥檝e done that through our Treat Me Well campaign at Mencap that we ran over the last three years, making sure medical staff had resources and training and tools and tips. So yeah, I think, you know, it鈥檚 a very difficult situation, and the only way things can get better is if people have the right support and reasonable adjustments, and under the Equality Act they have a right to those. So as long as those are used then people shouldn鈥檛 have to go through that kind of situation.

NIKKI -

Yeah.

EMMA -

I think it鈥檚 just that the death rate and the illness rate amongst disabled people in this pandemic鈥檚 just been so high and so scary that I think we鈥檙e all absolutely, I鈥檓 going to say, I don鈥檛 know, freaked out by it. I鈥檓 shivering listening to you and to Baroness Jane Campbell and to Keira and knowing that the stats are so, so high. I think that鈥檚 the really sad thing isn鈥檛 it?

NIKKI -

Shall we move on to a few positives? There were some positives. I know personally pre COVID I鈥檇 spend about nine hours a week driving up and down the M6 to Manchester and back, working very intensely and being absolutely pooped at the weekend. And actually, since I鈥檝e been working more from home, I obviously have gone out and done some filming for news and 鈥榃atchdog鈥, but I鈥檝e been working in the majority from home. The balance I feel is a lot better, I鈥檓 a bit stronger because I鈥檓 actually managing to do a few exercises, you know, so my life has definitely improved in that area. Of course I鈥檓 going to be going back to the office a bit more, but any positives? Let鈥檚 start with you, Jonny.

JONNY

Sure. So actually during this time I鈥檝e been putting this book together, which is called 鈥楾he Book of Hope鈥, because I think we could all really do with some hope and inspiration, and basically it鈥檚 101 different contributions from people from all sorts of backgrounds, walks of life, all who have overcome struggles and challenges and it鈥檚 how they found hope again. And it鈥檚 really helped me, the book. Actually putting the book together during lockdown has helped me. Because I get my sort of strength from other people, from learning what other people have been through, what鈥檚 helped them.

So we鈥檙e putting the book out in April and yeah, I just really hope that people can benefit from it. I guess, I feel very grateful, very grateful for technology. I mean, the fact that we鈥檙e all sitting here right now having this discussion, I mean that鈥檚 pretty amazing. And people also giving their time. So we actually did, my charity did a mental health festival for schools during the pandemic. Everyone was being home schooled and we wanted to put stuff out there for young people, for teachers, for parents, and we had 400 volunteers, which is amazing.

NIKKI -

Wow.

JONNY -

All different, you know, mindfulness teachers and yoga teachers.

NIKKI -

Love it.

JONNY -

Yeah, it was fantastic. Different charities like Anna Freud Centre and Place To Be, they all got involved and they volunteered. As a charity, again we鈥檝e lost money, I mean that鈥檚 a whole other thing, you know, charities obviously losing all their fundraising, so we didn鈥檛 have any money but we had all these volunteers that gave up their time for the sake of, you know, people鈥檚 mental health. And it was just incredible to see so many people come together and yeah, offer their time. I think that鈥檚 been amazing, seeing actually yeah. No, I do feel much more positive. I think, yeah, there鈥檚 been so much kind of goodwill out there from the public.

NIKKI -

I love that.

JONNY -

And I just hope that continues. I hope we don鈥檛 lose that sort of spirit.

NIKKI -

Hey, Jonny, talking about volunteers, do you want a 41 year old that knows a few chords on a ukulele? [Laughter]

JONNY -

Oh, yeah. Absolutely.

EMMA -

She鈥檚 about to break out the Scooter song now aren鈥檛 you, Nikki?

NIKKI -

Oh, you know it, Emma? I鈥檓 so obvious. Have you heard it? She knows it. Any positives for you, Emma?

EMMA -

I was desperately trying to think of something very interesting to say while Jonny was talking there. I think for me being blind with small children, getting them out to classes and going to playgroups and just getting them to parties. I mean, they鈥檙e all great things for them to do, but I find it really hard, and I find it really, really stressful, and my house is, like, I know where everything is and I can do lots of things with them, and we鈥檙e very, very lucky to have a garden. So I think my home is my castle and I鈥檓 happy there, and I feel like, I mean, I can鈥檛 wait to go to London and I can鈥檛 wait to go for dinner and I can鈥檛 wait to do all these things, but I suppose if there was a positive it would be, A, that I鈥檝e been able to spend lots of time doing things with my kids that I don鈥檛 have to worry about anyone else鈥檚 judgement or I don鈥檛 have to get anywhere or I don鈥檛 have to find my way around a big loud noisy hall full of toys. I don鈥檛 know how they feel about that, but鈥 [Laughs] And I suppose the working from home as well, you know, they were positives but I wouldn鈥檛 like that to last forever. Yeah, there have been positives but I鈥檓 looking forward to all the things that I鈥檝e just said that I find stressful as well.

NIKKI -

And what about you, Keira? Have you learnt anything as well, Keira, about yourself in this period?

KEIRA -

Definitely, definitely. I think right at the beginning I felt very isolated, even though I live with my husband, but he was out working, he was a key worker and he still is, because he works for Royal Mail, but I was on my own during the day a lot and I felt very isolated, I felt cut off, especially when I was furloughed. Like, that was really hard. I took it really personally. I was like, but you can鈥檛 furlough me, like, I love Mencap, I love my career, like, what are you doing to me? And I felt everything I鈥檇 ever known was just gone and I was like, it was so hard. But I think technology has really helped, so I have literally been doing Zoom quizzes, Zoom baking, Zoom everything. All my family are on Zoom, we do Zoom calls with my friends, Zoom calls with my family, and that鈥檚 been so nice. I鈥檝e needed that. I鈥檝e needed that for my mental health, I鈥檝e needed that for my own sanity.

But one thing I can say is I feel like I鈥檓 definitely going to come out of this whole pandemic stronger as a person than I was at the beginning. I feel like now if I was thrown into another situation, God help not, but if we are, I know that I鈥檝e got the coping skills. I know that I鈥檝e got tips on how to react to it. I鈥檝e got resources now that I can go to. I know where I can go for help and I know who I can talk to and I trust. I won鈥檛 cry so much which will be lovely, because I think I鈥檝e spent the whole pandemic in tears, so it鈥檒l be nice to be happy for a period. So yeah, like, it鈥檚 going to be really great to see my friends. Like, the first night out, like pub night, can鈥檛 wait, like, I鈥檓 literally going to be running to the pub door. So yeah, I鈥檝e learnt a lot about myself and so yeah, I think I鈥檓 definitely going to come out of it feeling like I can take on the world one day at a time, but I鈥檒l be mentally stronger, yeah.

NIKKI -

Oh, Keira!

KEIRA -

And I鈥檝e got my new podcast.

NIKKI -

Yeah, your听 new podcast. And I鈥檓 going to go on it aren鈥檛 I?

KEIRA -

Yeah!

NIKKI -

You鈥檝e totally pumped me up there, because I feel like I鈥檓 going to come out of this bloated with massive roots. Like, my adult acne, it鈥檚 reappearing. I mean, honestly, I鈥檓 frazzled. I think this podcast could actually be a six parter, there鈥檚 so much. But I thought we鈥檇 be done within an hour. My PA鈥檚 been here for half an hour and we鈥檙e still going on. Thank you so much for joining me and being so open and so honest, and it was great as well, Jonny, just to get the perspective from you, it鈥檚 really interesting and I鈥檓 so glad that I now know you, and don鈥檛 be nervous, but I will stalk you on the internet. [Laughter]

EMMA -

And I鈥檓 so glad you鈥檙e doing a bit better as well. It sounded really scary.

NIKKI -

Yeah, I鈥檓 so glad.

KEIRA -

Yeah.

JONNY -

Yeah, I just think, you know, I know a lot of people are struggling with their mental health right now and know there is support out there as well. I think that鈥檚 really key, there is support, there is help. There鈥檚 a great organisation called Hub of Hope, and basically type in your postcode then it brings up all your local mental health support groups, charities, organisations, so please see what鈥檚 out there, because there is help and support. You don鈥檛 have to do it alone.

NIKKI -

That is a brilliant link. That鈥檚 a brilliant link. Hub of Hope. Here at Ouch we鈥檙e always interested in hearing your opinions and experiences, so remember, you can find us at 麻豆约拍 Ouch on Facebook or you can search @bbcouch on Twitter. And I鈥檝e been well impressed, like in awe actually, as the Ouch team have been working so hard throughout the year to bring you so many podcasts that have reflected the many stages and the struggles of the pandemic. And, you know, creating Cabin Fever, it鈥檚 just brilliant. Brilliant, brilliant. So thank you for listening and here鈥檚 to a future 12 months there鈥檒l be a lot less drama. And banana bread. Oh no, thank you so much guys.

KEIRA -

Thank you.

EMMA -

Thank you.

JONNY -

Thank you.

[Music]

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