Speaker 1 00:00:05 Hello, and welcome to today's episode of Accessibility and Me. I'm Anica Zeyen from Royal Holloway University of London, and I co-host this podcast with Oana Branzei from Ivey Business School in Canada, and Luke Coughlin, also from Royal Holloway.
Speaker 2 00:00:21 In this episode, we spoke to Fazilet Hadi, head of Policy at Disability Rights uk. Her recent advocacy work is focused on highlighting the unequal treatment of disabled people during the Covid 19 pandemic.
Speaker 3 00:00:34 Thanks very much for joining us today. Could you summarize the effect of the Pandemic on Britain social care system and what went wrong in hindsight?
Speaker 4 00:00:42 Yes, thank you, Luke. Um, the, the pandemic had a devastating effect on the lives of millions of disabled people in various ways, some of which could have been predicted in advance if, uh, the government had thought about it in terms of social care. There were a few different factors. So the government kicked off the pandemic in March, 2020 by implementing something called the Coronavirus Act. And in that act, which contained lots of clauses about, you know, recruiting more, uh, medical staff to the nhs, um, rules on policing. Um, it also included a diminution of the rights of disabled people, which was a very shocking way to start the pandemic and rights to social care rights, to special support in education, and some mental health protections were all reduced. So immediately we see social care being deprioritized right at the outset of the pandemic. And then if we, um, think about what happened, the NHS was very much prioritized.
Speaker 4 00:01:56 I don't know if your listeners remember, but it was quite a few weeks before the social care action plan came into being. And in those few weeks where there was a very high number of deaths, there were care workers. Um, without the right p p E, there were vulnerable people in care homes, um, having, um, people with coronavirus discharged into their homes. There was little planning for social care generally, and I think they took the government quite a few weeks to come up with the social care action plan, which then did begin to prioritize getting, um, P P E and test covid testing out to care workers. But it was a little late, unfortunately, and certainly discharging people with covid into care homes, um, had very, very serious impact. In fact, there is a judicial review at the moment of that decision. And more generally with social care, eight local authorities did take advantage of the government's Coronavirus Act, and they actually reduced rights for disabled people accessing social care.
Speaker 4 00:03:12 But I think it's fair to say that, um, we heard that social care packages were being reduced across England. Local authorities were taking away hours. They were saying, well, you can't go out anymore, so you don't need these hours and hours were being stripped back. And local authorities would say that they had to deal with competing pressures of COVID and a social care system that was under strained. But from the point of view, disabled people, it left us with maybe fewer care hours than we needed. Some people didn't get care at all, and it left us isolated and maybe not receiving the dignity and support we needed.
Speaker 3 00:03:54 Thank you. And what do you think explains this oversight, um, from the government and the implementation of the Coronavirus Act? I mean, in particularly in regards to disabled people's rights and the social service cutbacks and social care cutbacks that you mentioned?
Speaker 4 00:04:09 I think genuinely the Department for Health and Social Care has historically treated social care as the poor relation of health. And it took them a while to say the right things about parity and how the two systems were equal. Of course, government actually has more, um, control over the NHS as it is a national service, even though it's, you know, devolved to trust to deliver it. And primary care networks, it is a national funded service, whereas local government funds social care. I think in a sense psychologically it's easier for government not to feel as empathetic or as close to social care because they don't run it. And, um, I think that kind of distance from social care caught them on the back foot. They don't have as good, um, visibility of what's going on in social care. Their data isn't as good. I don't think they, they knew where care homes were.
Speaker 4 00:05:14 I, I think they struggled to then contact Care Homes to sort of deploy a meaningful response to Covid. You know, it'd be interesting to know whether they actually have knowledge of the numbers of people in receipt of social care across the country and how many people are turned away and how many care packages were reduced. But certainly from my point of view, the, the visibility of social care within Department of Health and Social Care is, is not really strong enough. So I think they naturally inclined towards prioritizing health. But of course, the two are so linked, you know, if you don't think about both systems and make sure both systems are working efficiently, you cause problems for each system. And certainly I don't like social care being seen as an adjunct of na, the National Health Service. But certainly if the social care system isn't working, the NHS finds that it can't discharge people into community support because that, that community support isn't available.
Speaker 3 00:06:18 Could you talk about some of the inequalities disabled people faced when accessing healthcare during the pandemic?
Speaker 4 00:06:24 Yes. So again, um, at the beginning of the pandemic, it was, again, it had a very bad start. Within that first week, as I say, we had the Coronavirus Act reducing rights for disabled people. Very shortly afterwards, we had the National Institute of Health and Care Excellence bringing out guidance, um, on who should have access to critical care. And in that guidance, they actually referred to something called the Clinical Frailty Scale. And this scale showed that if you, if you needed more support when you get home, um, you should have less points and therefore be deprioritized for critical care. So you can imagine there was an outcry immediately, and to be fair to, to NICE the National Institute, they did withdraw that guidance. But I think some of us found it extremely shocking that they put that guidance out. And it, it sent quite a message to us, you know, are, are we valued?
Speaker 4 00:07:24 Are our lives equally valued? So very soon after that guidance came out, disability groups and allies put together a statement around asserting our, our, our equality and asserting that the NHS is there for us all, and actually it's equally accessible, available to us. The NHS responded quite quickly and wrote to all trusts saying, of course, the NHS constitution means that everyone should be treated equally. So they did act, but again, it, it kind of left, kind of left a bit of a taste. The fact that even needed saying, and it was very shortly followed by some GP surgery, sending out blanket letters to older disabled people and younger disabled people in residential homes asking them to sign did not attempt resuscitation notices. So again, a a bit of a message like that, disabled lives aren't equal. They're not, they're not as important, they're not valued in the same way.
Speaker 4 00:08:30 Again, that was condemned by the c QC and by medical, um, bodies. But it was done. Nevertheless, the government actually asked a C Q C to conduct a review of the Do Not Attempt Resuscitation notices during the pandemic. Um, and the CQC produced its report earlier this year. They found that there were, uh, at least 500 D N A R notices sent out. Uh, that's probably the tip of the iceberg. And they came forward with good practice because of course, some people might decide that they want to do not attempt resuscitation notice on their their record, but that should be a personal decision. It should never, never be a blanket one. So I think the nice clinical frailty scale and the, the DNA R notices being sent out really sent a message to disabled people about our lives, and I think made people very anxious about the care they would receive.
Speaker 4 00:09:30 Uh, there were also issues. You weren't allowed to take a personal companion into the hospital with you. Well, for some disabled people, you know, that is a reasonable adjustment under the Equality Act, you know, for for communication needs. They need a support worker with them. And it took months, I think it took to last November for the NHS to change that guidance, but really that was a breach of the Equality Act. So as well as the kind of issue about our lives being equal, I think there's another issue about does the NHS truly understand what making reasonable adjustment under the Equality Act means, and how did they implement those reasonable adjustments during the pandemic? And I think we'd say that they largely didn't,
Speaker 3 00:10:18 There have been reports of the D N A R nurses and the intensive care priority list within hospital primary care during the coronavirus itself, do you think, uh, more public scrutiny should be put on this issue?
Speaker 4 00:10:30 Yes, I think so. I mean, I think, you know, we've joined others who are caught, you know, called for an independent review, and we, we are gonna have a review next April. But yes, I think, I think it, I think we really need, we don't fully know what happened to disabled people who went into critical care. I mean, we do know that some disabled people in residential homes, um, never got taken to hospital. And I, I suppose, you know, those dec all those decisions and those assumptions about our lives do need to be put under scrutiny. Definitely. And I think the Bereave Families Group has done a really good job in actually trying to keep the pressure on government, um, to look at what was going on. Um, certainly, um, you know, as I said earlier, there is, um, a judicial review going through at the moment regarding the government decision to discharge people with covid into care homes, because that just does seem such an unreasonable decision. So I think people have done a really good job at using the law to assert human rights and assert, assert equality rights. But really that shouldn't really fall on us, that should fall on government. I think we saw the government breaching quite a lot of equalities legislation over the last 18 months.
Speaker 3 00:11:54 Obviously, the pandemic came in the context of the social care budget being repeatedly cut under the government policy of austerity. What effect did this have on the pandemic response?
Speaker 4 00:12:04 Well, of course, you know, you're absolutely right. Um, we didn't have a social care system that's fit for purpose anyway. And you could argue the NHS and social care after 10 years of austerity were both underfunded. Social care has been crying out for funding, uh, for the last decade. Um, and we see the people entitled, you know, the people getting social care becoming fewer and fewer and local authorities increasing the charges on disabled people, uh, who receive social care to try and close that budget gap. So it is a really, it's a really bad picture out there. And it was bad before the pandemic. The pandemic made it worse. And I think, you know, we see disabled people now, um, really, as I say, being hit with increased care charges and having their packages of care reduced. It's, and many, many people who really do need social care being turned away.
Speaker 4 00:13:08 And I think, you know, it's, it's fair to say that even in the, in the settlement, a cup that was made a few weeks ago where the, where the government said that, you know, they were going to add to national insurance to pay for clearing the NHS backlog and then for supporting, um, capping of care home charges. I think we saw that. Again, the response was, well, social care, we'll solve some of the picture. We'll, we'll try and cap care costs only in 2023, by the way. So that's two years in the future, but we won't deal with any of the underlying issues around it being starved of funds. I mean, half the social care budget is spent on working age disabled people, most of whom aren't in care homes. So, you know, we saw a very partial response. And I think despite social care being much more visible during the pandemic to the general public, and the role of care is being much more applauded, we don't seem to be seeing that follow through now in government policy or government funding. You know, we really should be seeing in radical increases to the social care budget starting next April, not a partial increase in 2023
Speaker 3 00:14:26 With the full view of the pandemic. And, and obviously it, it's exposed and accelerated some of the problems that existed in the social care system. What changes are needed to the UK's social care system going forward?
Speaker 4 00:14:39 Well, um, you know, we would, we would like to see something much more around supporting disabled people to live independently, to have choice and control over their lives, to be able to connect with the outside world. So a support service that's much more around enabling empowerment, leading a full life, not a care service that's around feeding and washing and daily tasks. Of course, those tasks need to happen, but we really should have a independent living service that supports people to lead life to the full, to be out and about. If they need support to go out shopping, to meet friends, to look after children, that should all happen. So we need a much, a much more enlightened empowering for you of what support should look like. And with the right support, so many disabled people could make a contribution, whether that's through paid or unpaid work, but without that support, you know, we just can't.
Speaker 4 00:15:45 And I think there's something about moving away from kind of a paternalistic being done, two version of social care to type of social care that is, as I say, enables people to lead the best lives they can. That involves some criteria that need to be met. It involves standards of care that need to be inspected. And it also does involve funding, you know, so that care workers, support workers are paid properly. And so that the system is invested in. And, you know, it, it isn't good enough that we're a society that thinks it's all right for people who need support to be staffed of it. Um, it, it doesn't feel right. And I, I can't believe most people think that was morally right. So I think this is the time that we need to see a sea change in attitudes and, and a real true parody between health and social care. Thanks very much for joining us today. Thank you, Luke.
Speaker 1 00:16:57 Thank you very much for listening to today's episode of Accessibility in Me. We hope you enjoyed it, and we'll tune in to our next episode. We would like to thank the British Academy for funding today's episode.