Baroness Sal Brinton has vast experience of health and social care legislation through her work in the House of Lords. She explains to Isaac why the entire system and attitudes towards pandemics has to change, particularly for Deaf and Disabled people and the most vulnerable in our communities, because during COVID lockdowns the required support mechanisms for Deaf and Disabled people were not available.

Disability Rights UK (DRUK) and  People’s Voice Media have engaged in dialogues with Deaf and Disabled people about their experiences of the COVID-19 pandemic and lockdowns. These lived experience narratives detail how people were treated by health and social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities. Additionally, the dialogues explore how Deaf and Disabled people are currently managing in their daily lives, their hopes and expectations in terms of the COVID Inquiry.

These narratives are great ways to learn from one another, and can be powerful communication methods. Some of the people sharing their lived experience are speaking on behalf of people they care for who do not communicate verbally.

Can I get you to introduce yourself, please? Yes, I'm Baroness Salton. And, um, I am the Lib Dem Frontbencher for health and social care. I am also disabled. Bank sell

So what does the feminist do that? Well, the House of Lords is the second chamber in our parliament system. But we're very different to MP s. We spend most of our time going through legislation in detail

We call it scrutiny as the technical word. Uh, but I spend my life reading, um, proposed legislation, proposing amendments, talking to other members of the House of Lords and then making sure that ministers understand where our concerns are. I think so

So can I ask you, what impact did the Covid pandemic and the lockdowns have on your life as a disabled person? I'm disabled by my disease. I have a number of autoimmune diseases, and I mainly use a wheelchair and I can walk a bit, so I use a stick as well. Uh, but my main problem for covid is that I'm on severely immunosuppressing medication the whole time

So I was in that group of people described initially as vulnerable and then clinically vulnerable, and then I moved into the the Group of the Million who were eligible for early vaccinations and and other medication. And although I I don't I'm not one of the half a million people with blood cancer and others who are still shielding at home. I only go into work if the numbers the covid numbers are below a certain level

And I will talk to my consultant or, um, rheumatology nurse about what? What I should be doing. Thanks. So can I ask you about what impact did it have on your work and what was happening with you at the time of like in terms of work wise? But it became evident to me at the beginning of February that things were beginning to happen

And at that point, my work life changed completely because the point about being a frontbencher a spokesperson for my party is that with anything new, you have the responsibility to keep yourself informed. And I was talking to my local director of public health who was explaining after that spring half term, why they suddenly saw a spike after people have been away for half term. But nobody knew at that point exactly

how to treat it because, you know, 2020 that early we didn't know. Um The big effect, though, was as cases started to build up, was preparing for what everybody knew would be a pandemic. And in my personal life terms, that meant, I mean, I luckily had an appointment with my consultant anyway

But I talked to him very early on about what I should do to keep myself safe. And I felt it was important to make sure that any legislation that happened also reflected not just coping with people who'd got it in hospital, but how it was going to affect other people's lives as well. And and then the cases went above a certain number, and I had to dip out

There were no arrangements for, you know, remote zoom contributions to parliament. So I'd done a lot of work on new emergency regulations, and whilst at that point we just said, Look, we've got people becoming ill and dying, we've got to do something for us in Parliament, the real horror was there was no time, everything was introduced, and then we were asked to comment on it, so we always felt we were on the back foot, and I'm afraid that still continues today. I mean, we're not in the same emergency, but two weeks ago, we were debating a regulation that the government had introduced the day before it came into effect, and we didn't talk about it for two weeks

So from my perspective, the worry is we can't do our job properly and things got through that shouldn't have got through. Can you tell me a bit more about those things that got through? And also you talked about the shielding group and, you know, being on the back foot. How do you think people with disabilities are included in some of those decisions? Uh, well, some of the things that got through was the not understanding people in social care or vulnerable people who had not at that point even been asked to shield

That happened, I think early April mid April, um, and making sure that they have protections, and it was also very evident to us. I mean, most, most of us in in in in Parliament and have somebody who is has social care, whether it's, um, an elderly person or an adult with a disability who needs social care support, whether domiciliary care or or whether it's it's living in a a care environment or even sheltered accommodation. And they were just forgotten

So some of the real horrors that went through was the powers for bodies to be able to commandeer things. And I was absolutely horrified when I heard that consignments of P PE that social care providers had managed to buy from abroad were being commandeered for hospitals because they didn't have enough. So when Secretary of State said, you know, they'd thrown a ring of I can't remember the the words he used but a ring of security around our care homes

I knew the opposite was the truth, and my role as soon as we were able to contribute on Zoom to Parliament because we were all in lockdown was to say it loudly and clearly. And I did, uh, but the other thing I did was to challenge the shielding guidance because if you looked at the guidance properly, it was telling those of us in the shielding group that we had to be very, very careful. But the support mechanisms were just not there to support that at all

So, for example, it was only the person it wasn't their family or immediate contacts. There were very few arrangements for work, and so my role was, you know, somewhat tediously, to go through these things every time they were published. Then go and speak to the minister

But sometimes privately and then obviously in public, on on the Lord's, uh, parliamentary zoom, and it was utterly relentless. I mean, we have Usually we'll do as a parliament in the House of Lords. We'll probably do about 15 regulations across the entirety of government

For the first two years of covid, we had 400 just for health, just for health. So it was relentless, absolutely relentless. And in terms of shielding, um, one of the things that became clear was that as people understood what was going on, the NHS needed to change what it was doing

And the initial every everything seemed to be designed to protect the NHS, which was completely understandable because we didn't want the NHS to fall over. But it took even the NHS a while to understand the consequences elsewhere. So I still speak to this day about what the arrangements are for people who have vulnerabilities, uh, for people who live in social care

Um, because part of the problem in our NHS at the moment is that we've got over 5000 patients with covid in hospital and a lot of them are vulnerable. They have got immunosuppression, immunocompromised, and yet we're still having trouble being heard by the government to make sure that whilst we hope covid is on the decline for some people, it isn't But many people who shield still now to this day because they have to tell me that they fear for their lives. And they're right to I had a very dear friend who, uh, had an autoimmune disease who had a lung transplant which went extremely well

This was in the first SEC first lockdown, second lockdown went home and unknowingly, his carers brought in covid and he died, uh, which was awful and almost unpredictable because you can't tell often in the early stages and that that carer was probably devastated. But the problem is, we as a group remain vulnerable and will do so. And until the NHS and government understand that they have a duty of care towards this group of people

We will still continue to see people either becoming ill and dying or having to live a completely different life losing their jobs, not being able to see friends and family. And that really shocks me. Can I ask you? Uh, so I I'm just wondering if you have a view on, Why do you think that some of these decisions have been made? Do you have an opinion why some of the decisions were made? So I think at the start it was a genuine lack of understanding

And, you know, I think we all have to understand the the nature of that first pandemic wave and then the lockdown and how everyone was trying really hard to to try and make things work. But that became unforgivable After the vaccination started to arrive and they realised within two or three months that that particular group of shielding people were not protected, they couldn't make antibodies and therefore they were not protected. And that, for me, is the boundary

So 2020. Just trying to think it's the end of 21 wasn't it? And, uh, people were beginning to have vaccinations. I still can't get ministers to hear it

In fact, it's worse now than it was before ministers stand up and say regularly in parliament. Covid is over. Covid is over

No, it's not. But I think there is a bigger issue, which is about how the disabled are perceived and one of the things that shocked me most. And obviously, I mean, I use a wheelchair in Parliament, a very visible disability

I sat and watched peers who are covid deniers who thought the vaccination was unnecessary. Stand up and say, Well, you know, we're gonna lose some people if they're vulnerable. If they're disabled, that's just life

And I thought, They're talking about me. They're talking about me and it. It's bad enough when people generalise, but they had people who they knew were in the same debate as them who they whose lives they were utterly dismissing

And I see that in lots of other ways, not covid ways at the moment as well, about that attitude towards disability benefits and not operating. Um, it, I mean, it's it's appalling, absolutely appalling, I think so. It's and it just sounds really heartbreaking to hear that these things continue and and I'm I'm wondering you, you're sort of touch on this

So there is lots of talk about a post pandemic world. Um, what does that feeling look like to you? One as a disabled person, but two as somebody, um, you know, working in the House of Lords and as a person championing in sort of disability rights issues. Well, I think the pandemic as with the Spanish flu outbreak in 2017 2018

Sorry. Let let me start that answer again. Um, so I think that the pandemic, as with the Spanish flu outbreak of 1917 1918, um, stopped everything in progression terms

And the real worry to me is that it all went backwards to life beforehand. Um, I came into the House of Lords er very early in 2011, and, uh, in my wheelchair, I sit next to Tani, Grey Thompson and to Jane Campbell. I mean, you know how inspirational to sit beside those two wonderful campaigning women

And we debated a lot both publicly and privately about 2012, and the Paralympics about how were things going to change? And that's my yardstick. Because the public think things did change, but they didn't there were some improvements. I mean, I I I was on the Lord Select Committee on on Disability looking at the Equality Act 2010, and and, um, whether things have been brought in and some of the things have changed, but far too many have not

And I know that from my own lived experience, um uh, the the current train strikes. I mean, I I say to ministers, I'll be saying it again tomorrow to the transport Minister. You know what? Whatever the merits or not of of the pay strike, it's not just about pay

It's about ensuring that trains are accessible to everybody. And I have been left on trains. I have overshot the the station because the station I left from didn't alert the station

I was arriving at that. I was there and it was too late. Um, I have been abused on trains by individuals

Um, British transport police found some CCTV but couldn't find the culprit. And I know that is the lived experience of far too many people with disabilities. I am fed up with being told when I have to go in early that people like me should not be travelling during the rush hour

It it is there in every part of our lives, and it's so wearying. And when you tell the stories people say, Oh, that's really shocking that shouldn't happen. But this isn't unusual

It really isn't unusual. So I tend to speak up if I can about things as they happen, because I actually think that I have a responsibility in my role to say, Look, this still isn't working. You've got to change it and make it work really important

And I was wondering if, um so the, uh, the in during covid there were things like the care act easements and then they would do not resuscitate orders. These things that surprised you or yes, they do not resuscitate orders. Deeply shocking

We had actually had a debate in the Lords the previous year about, um, how how they worked, what was ethical, what wasn't ethical. And, um, I mean to be to be fair, ministers didn't have nothing to do with this. This was it tended to be some misguided people in areas mainly GPS, who were struggling under the weight of things

But the problem is, it wasn't stopped fast enough and I I think it was appalling that anybody could just start applying, um, DNA PC r s, uh, without reference to the individuals, or if they didn't have competence, their families just happening automatically. Um, I think one of the most shocking things about that first email to people who had to shield right at the start was, Please think about whether you want to go to hospital at all or not, or what you want to happen in the event of you catching covid. Do you want to essentially have treatment? Uh, and that really made me think very, very carefully

Um, and unfortunately, doctors decided some a very small number of doctors decided, probably misunderstanding the rules that in a crisis they were able to do that. But that was stopped, and it was stopped pretty quickly once it was discovered. So I wanted to explore with you

What do you think we've learned? Um, from the pandemics and lockdowns. Hm. Um, so I want to go back to Spanish flu very briefly

There is a brilliant book, um, published in 2016 called Pale Rider, which is written by, um, an historian of medicine and in the last two or three chapters. She looks at the next 10 years and it's very interesting. Um, people's deaths by heart, disease and other and respiratory disease continued high for years and it was probably the equivalent of long covid

But she pointed out that all the benefits that have come in for looking after people and particularly the vulnerable just went straight back to how they had been before. And I think that the thing that I have learned is that even though I've been saying this loudly for the last year we've got to learn is that both the health systems and government have all gone straight back into the old ways and it profoundly depresses me because we know that we are more likely to have pandemics because we're in a global world where people travel much faster than they ever used to and we have to be prepared. So I hope the pandemic inquiry is going to provide some good results, but that's not good enough

The thing is that the entire system and attitude towards pandemics has to change, and in particular it has to change towards disabled people and the most vulnerable in our community. What would you like? The covid inquiry to hear. So what are those key things you would like the covid inquiry to hear

Well, thankfully, they are going to hear the story of the, um shielding people immunosuppressed or immunocompromised, and And look at that and look at the decision making process. Um, I hope one of the things that they're going to be looking at, I'm not sure they will, is how particular groups of people's lives were affected, which would include disabled people who may not have been, um, immunocompromised. Um, it's an enormous, Um, it's an enormous task

I think one of the things that mattered for me a lot with the correspondence I was getting was people stop thinking that reasonable adjustments were appropriate because once you're in an emergency, you just do what you have to do. And I think from some of the the the social media groups I'm on for people with my sort of condition, I I'm saying that that's changed, and I do hope the inquiry will start to look at that, but in a much more fundamental way. It's really got to look at the breakdown between the NHS and social care because the real scandal and that will come out in the in the inquiry is what happened to people in social care, Absolutely appalling

And it it has to come out in detail and lessons have to be learned. And I think to be honest, it's much more about the way we view social care in this country. And governments of all colours over the last 2 to 3 decades have stopped thinking about how social care works and how it is funded

And it's being blamed for systemic problems about funding and about the way people operate and the way the NHS and social care interact. If the pandemic inquiry can do some pointers towards that, that starts to change that attitude. It will be good

Thanks. So, I, um, the other day heard you talking about long covid. Um I was wondering if you could share with me, uh, kind of what's what's happening? What what kind of debates are happening and you're involved in around long covid and And, Yeah

So there are quite a lot of questions still being asked in both houses of Parliament about long covid. Um and indeed, we had a debate. I think you may be referring to the the debate we had, um, about three weeks ago

Now, where, um, we spent, um We spent an hour with various speakers going into detail, including some very senior doctors in the House of Lords also saying, explaining how things are broken down. Uh, and I I do think that as far as the minister and the Lords are concerned that that was heard. Uh, my worry is, I'm not sure the secretary of state is likely to do anything at the moment because he is one of the people that keeps saying covid is over

But long covid is not over as either. Not just covid but long covid. I'm vice chair of the all party group on a coronavirus, and we take evidence

And we've recently published our report on long covid. Um which is, I think, our following our third session over the last 18 months with long covid patients and with doctors and with health and safety at work people as well. Uh, and that what we're hearing now is that many people who are still really struggling with long covid are losing their jobs

um I've seen that as many as 400,000 NHS staff have got long covid. I have a friend who is a AAA senior midwife who has lost her job through long covid. And we know we are desperately short of midwives

I'm really worried that some of our public services are not trying to either treat people with long covid properly or build up the NHS to make sure that they don't lose that expertise and find part time roles, slightly different roles where their expertise can be used. Uh, it's really, really shocking. Thanks

So, um, I was wondering if you could share with me your experience of being involved in the, um, working group for the a p p. G on adult social care and what that felt like during covid. So all party parliamentary groups are brought together by people

Um, have to have MP s and members of the House of Lords in it. When those people have a particular interest, uh, that they share and the adult social care group, um, was formed in order to make sure that parliamentarians were listening to and hearing the needs of people in the adult social care sector. And, um I mean, it's been going for a while beforehand, and it and it was it was extremely useful because of the debate

You know, I just referred to about the crisis that we've got in social care at the moment. But during the covid pandemic, we started to meet weekly on Zoom. In fact, we were meeting weekly on Zoom before parliament got its act together to work on Zoom itself

Uh, because it was so important. And it was through that that myself and other parliamentarians were able to hear frequently weekly updates by email on what was going wrong and that enabled myself and other parliamentarians to ask ministers really difficult questions, really difficult questions. You know, I I referred earlier to the consignments of P PE

I mean, the minister was shocked when myself and and one of the other peers on the group said to him, We we're hearing this is happening. Please, can you find out and stop it? So the all party parliamentary group, adult social care provided a vital role to make sure that a sector that isn't normally heard in Parliament I mean, there's a AAA group of us who speak about it often, but it's not generally there. But during that pandemic the voice was absolutely vital

And we heard from all types of providers across the board, whether it's from individuals with their own p a s through to charities co-ops right through to small private providers to the mega providers all coming together for one particular thing. And that was to keep their clients safe and find out what on earth was going on with the pandemic. So it was a privilege to be part of it, and I'm still a part of it

And I you know, I I I enjoy it. I enjoy the the interactions, even though sometimes it can be pretty hard listening, definitely, and myself and Sally being people that were in that space, we've lived experiences. It felt very different

It felt like, um, no other kind of co-production or spaces we'd been in before because it was very intense. And we had met so often, Um, I was wondering about Do you have anything else you wanted to share about your experience of the covid pandemic? Um, I'm trying to think of just just one thing. I think The hardest thing is that I have three grandchildren, the youngest of whom was born in the summer of 2019, and I still have to be careful about when I see them

Um, so this year I've decided that, you know, I'm going to be with the family for Christmas, first time in three years, but I've also said I can't eat with them. I can't take my mask off for that long so I will see my grandchildren this Christmas. But I cannot sit around and eat with them

I'll have to be in a different room and it's a lived experience. I I'm not alone. I know many other people who won't even feel that they can go to see their family

But I've been watching the numbers. We're only a few days away now, and I think I can probably do it that way. Missing seeing your grandchildren growing up or your Children going through life crises where you would normally have been able to see them physically and do things

It's it's affected me and will affect me for the rest of my life. I'm I'm so sorry to hear that, and I think so. many people are just trying to find a way through

We all are. I suppose the good thing is, I know I'm not alone and that there is a voice. And there are people who are saying it loud and clear on social media and and thank you

Anyone who's watching this? Who does that? Thank you. I watch I speak in parliament and I will go on speaking in parliament. But we're fighting this together

Thanks. That's a really important thing to to hear. And my final question, um, you might have some questions for me is what are your hopes and futures? What? What next? Well, I'm about to stand back as the health spokesperson for my party and the Lords

And, um, one of the reasons for that is that, um I had been my party president and chair for five years up to December 2019, which had been an exhausting job because we had three general elections during that time and a referendum on a certain issue about Brexit and I hadn't stopped and And when I got back full time in the Lords, my boss, my leader, said to me in January 2020 Would you like to be our health spokesperson again? I've done it in the past. Um, there's not very much on. So, uh, I I I've done three years now of of covid plus the day job part, and I I I'll be honest, I'm exhausted

So he's very kindly accepted my resignation, and I'm going to the back benches, uh, and that will give me the freedom to reenergize and the freedom to do the things that I really, really care about. And disability issues. Covid long covid working with families with disabled Children

All of those things are my absolute priorities. And I will be able to give them probably more attention than I have been able to in the last 23 years. So may I take the opportunity to wish you all the best in your new roles or new ventures? Less, Um, yeah

On the backbenches and just say thank you so much for all you've done for disabled people. You certainly made us feel very welcome in all those calls. Uh, well, Isaac

Thank you. And you, I think you know how important that group is for me as well. Uh, and and and actually, some of the, you know, the other groups online that I'm involved with, They really help what I do

And being able to say to ministers I don't think you're aware of this is is absolutely my key role in the Lord. Thank you. Do you have anything else you wanted to add? Yeah

Cool. I'll stop the recording there, then, OK?.

This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.