Wednesday 10 June 2020
Ordered by the House of Commons to be published on 10 June 2020.
Members present: Caroline Nokes (Chair); Sara Britcliffe; Angela Crawley; Kim Johnson; Kate Osborne; Bell Ribeiro‑Addy.
I: Emma Boswell (reported via translation from British Sign Language), National Usher Co-ordinator, Sense; Ali Harris, Chief Executive, Equally Ours; Professor Lucy Yardley, Health Psychology, University of Bristol and University of Southampton.
Written evidence from witnesses:
Witnesses: Emma Boswell, Ali Harris and Professor Lucy Yardley.
Q205 Chair: Hello and welcome to the Committee. I very much appreciate your being here today and thank you for coming to give evidence. I am going to direct my first questions to Professor Yardley. I am particularly interested to understand how you think the Government have communicated their messages during the pandemic, whether they have been clear enough in communicating with the public as a whole, but specifically disabled people, and what challenges there have been.
Professor Yardley: I have to clarify my expertise and role here first, I am afraid. I am a health psychologist and co‑chair of SPI‑B, which provides behavioural advice to the Government. We do not take an operational role at all in advising on the details of exactly how communications are framed. Our advice is very rapid depending on the phase of pandemic and what kind of advice is needed by Government. It tends to be very broad‑brush about the kind of messages that are needed in the population. Nevertheless, we have paid attention, where relevant, to very important differences relating to things like age, gender, ethnicity and especially health status. In terms of the accessibility of information for particular groups with disabilities, I am afraid I could not comment at all. I can comment at that broader‑brush level if that is of any interest to you.
Q206 Chair: That would absolutely be of interest. When targeting specific groups of the population, how much of your advice has been taken into account in making sure the right messages are going to the right groups at the right time?
Professor Yardley: The advice has had to be produced at such a rapid rate that there probably has not been as much tailoring and targeting to different groups as would be ideal. An example is that, in terms of people’s health status, a whole new set of different categories have emerged as a result of coronavirus. You have people who are at very high risk and are shielding. Then you have people who are at high risk and are considered vulnerable. Then you have the general population. The messages have needed to be different for these different groups. Although different messages have gone out, which is good, I know that there has sometimes been confusion in some of the groups about exactly which messages apply to them.
Q207 Chair: Do you think more work needs to be done, then, to understand how different groups have responded? How would you like to see that taken forward?
Professor Yardley: I think absolutely that, now that things are not changing quite so quickly and we have an opportunity to do more, we definitely need to do more about getting different messages across to different sections of the population. On SPI‑B, we have started to do that. I cannot speak for SPI‑B, but I can talk about my work in it. For example, at the moment I am very involved in looking at high‑risk occupations and situations, so people who have a lot of close and unavoidable contact with other people, and how we need different messages about infection control for these people in particular, because they are at higher risk both of catching the disease and of spreading it. There is a link here with ethnicity because BAME communities are over-represented in these kinds of occupations. Of course, it is known that there is an excessive burden of illness and mortality in those groups as well and this could be part of that picture. That is one way we need different messaging, and that is being developed.
Something that SPI‑B has very strongly communicated to the Government for several weeks now is that there needs to be bottom‑up development of strategies and messages for resuming activity safely. That needs to be at the level of different communities and different organisations. Members of the public need to be involved in that, because people have a better idea of the risks and the practicalities of their own situations and what is going to be a feasible and acceptable way of dealing with them. They are going to come up with the best solutions jointly, working with experts on infection control and so on. There is going to better trust in messages if people have been involved in thinking about the situation and how best to manage it.
Q208 Chair: You said that you have been communicating that message to Government for several weeks now and that it is an important message. What sense do you have that that message has been received? What evidence is there of the Government better approaching this from the bottom up?
Professor Yardley: At the early stages, there was less evidence of that being applied and some evidence that the changes to the restrictions on activity and so on were being introduced before this process had been engaged in sufficiently. I know it was happening, but we had hoped that it would happen to a greater extent. I think that there are gradually better channels of communication and I am witnessing, definitely, better take‑up across Government of this kind of approach to doing things.
Q209 Chair: What contact have you had with the Behavioural Insights Team at the Cabinet Office to understand the work that it is doing and make it dovetail with SPI‑B’s?
Professor Yardley: We do have a member of that unit attend SPI‑B meetings and they do sometimes share some of the work they are doing with us. It is not an extensive amount of contact. We are certainly not working closely together, but we are in touch with each other.
Q210 Chair: This is quite a difficult question to frame. Over the last week or so, we have seen large numbers of predominantly young—not exclusively young—BAME people protesting in large numbers. Have you seen any evidence of the Government working to understand how they can best communicate to young angry people, who have every right to protest, how they can protest safely?
Professor Yardley: I can only talk from my knowledge of SPI‑B. I have no knowledge of the whole of Government and of what they are doing in this space. What I do know is that SPI‑B has been asked for and has provided quite a lot of guidance on exactly this issue of how to deal with large gatherings, including protests. We have provided guidance on making sure that you do not alienate and exacerbate the problem. To be perfectly honest, to some extent, I have seen that advice being followed, not necessarily by everyone, but, on the whole, that seems to be the approach being followed. We have given advice as well on communicating with these communities and, to be honest, I would not be able to tell you how much that is going on.
Q211 Chair: Thank you very much, Professor Yardley. Emma, thank you for coming today. As a disabled person, how easy or otherwise have you found it to follow Government advice and what would have made it better for you?
Emma Boswell: Thank you for having me to give evidence to you today. By way of introduction, I work for a charity called Sense. Sense is a charity about deafblindness and complex communication. Getting information from the Government has been particularly difficult. Broadcasts have not always had—in fact, they have not at all—British sign language. That puts up an immediate barrier for somebody who uses sign language. The letter that was sent out to everybody by the Government did not come in alternative formats, so, for me and for colleagues and people I work with who need alternative formats, that just has not happened effectively. There is an equality duty for the Government to provide information. I think they have fallen foul of that duty and have not made things accessible at all in as many ways as possible.
Q212 Chair: Do you feel that has left you more at risk from Covid and, moving out of lockdown, how would you like to see advice better communicated?
Emma Boswell: During the pandemic, it has been worse not only for me but for many people with disabilities, because we have been at a disadvantage by way of communication from the Government. It would probably be better for the Government to include disabled people, to listen to the charities and experts surrounding us, and to take that inclusion right from the beginning.
Q213 Chair: Do you feel that Sense has been included from the beginning? Have they been listening to representations that you have made?
Emma Boswell: Sense and our public policy team have been in touch with the Government and there has been a response. We believe, in May, that working became a lot more effective and we can see some changes. However, there is a lot more to do because one disability is not for everybody—everyone is so different.
Q214 Angela Crawley: Can I begin by asking Emma the next set of questions on taking account of disabilities? Now, you mentioned that there is no British sign language interpreter for the daily briefings and the format and accessibility of the letter. The Government have issued advice through a letter to many households and through the televised daily briefings. Have these been accessible to everyone and how could we improve on that to ensure that everyone can access this information?
Emma Boswell: There is a question of lots of different formats and one format does not suit everybody. It is not only format; it is also language, because some of the language used has been overwhelming. The vocabulary used, the new jargon and the new language has not come with any sort of explanation. It is access to things like subtitles and audio description. The search for information by many people has been frantic and, of course, what comes with that is a delay to clear and accessible info.
Q215 Angela Crawley: The Government have also used social media to communicate their Covid‑19 advice. Do you think this has been accessible and how could the Government adapt their communications to be more inclusive of disabled people?
Emma Boswell: The Government cannot rely just on social media and the press to report things. The Government have a duty to make the information accessible for everyone. Some people have not been able to access social media at all because of their disability. It is a case of working with people, finding out what their communication needs are and addressing them. It is working with people.
Q216 Angela Crawley: Absolutely, that is a really important point. You mentioned there the necessity for inclusion and engagement from the beginning. What conversations have there been between the Government and the disability sector to improve those kinds of communications that you are aware of, Emma?
Emma Boswell: I would agree that the charities and organisations for and of disabled people need to be part of the strategy. They need to come together to make everything accessible because they are the ones who know how to do it. There has to be thinking about us before a plan is put into action. There are accessible information standards, going back to 2014, which are still not being addressed. There is a question of human rights here as well as equality.
Q217 Angela Crawley: Thank you, Emma. I have no further questions for you. Can I address the same question to Ali? That was specifically on the conversations that have taken place between the Government and the disability sector to improve these methods of communication. Can I also ask whether you believe the Government have met their responsibilities under the Equality Act to ensure that these communications are accessible to people and specifically people with disabilities?
Ali Harris: Equally Ours is a national network of equality and human rights organisations. We have had a lot of information coming in from across a range of organisations and community groups on these issues. One of our member organisations, Inclusion London, runs a survey asking disabled people about the key problems relating to Covid. It has had over 300 responses and nearly half of them have said that they have had problems accessing or understanding information and guidance from the Government. That is mirrored across a wide range of communities, such as BAME and Gypsy, Roma and Traveller communities.
It is about information in accessible formats, but also information not always coming out in a timely manner, which is obviously difficult in a crisis, but it is all about planning and thinking things through in advance. For example, guidance has just now come out for people who use direct payments to organise social care support about the furloughing of staff. The guidance came out on 8 June and the deadline for applications for the job retention scheme was 10 June. There are timing issues as well as issues with information not being well targeted.
The language we have heard repeatedly is “wordy guidance”, aimed mainly at institutions and little aimed at people. People are reliant upon charities and voluntary sector organisations to turn quite complicated information into something that people and communities can understand, whether that is in terms of literacy levels, community languages or accessible information for people with learning disabilities, so easy-read information. There has been a lack of targeting as well. We have heard from our LGBT organisation members that people who are living with HIV have had confusing information as to whether they need to shield.
Lack of information for carers is another issue being highlighted with us. The information about carers’ rights to be furloughed needs to be more targeted. There are quite a lot of different areas of confusion and lack of information. One other area that has been flagged consistently to us is local authority staff not understanding the guidance around easements that relate to older people, disabled people and children, and not knowing how it works and how it applies. There is quite a wide range of issues. I do not know how much you want me to go on now.
The digital‑first approach has raised lots of issues for communities that are traditionally excluded or face exclusion, so people who normally do not have access to wi‑fi and rely on using public spaces. Again, significant proportions of disabled people do not have online access, particularly younger people, as well as Gypsy, Roma and Traveller children and young people. There is a need to look at different routes to reaching people and communities who do not use the standard that people seem to assume is accessible to everybody. There is a bit of a myth that everybody is online these days and that certainly is not true. Those communities need to be reached in different ways, including through working with community groups and organisations that have the reach into those communities and have the trust of those communities. I will stop there, but there is more.
Angela Crawley: No, that is great. Thank you, Ali. You more than answered my question and I am really grateful.
Q218 Chair: Emma, there are many hundreds of thousands of pages of information on gov.uk. How much would you be helped if that could be overlaid with BSL, which we know is technically possible?
Emma Boswell: For me, that would be wonderful because it would make everything accessible. There are other things to think about like subtitles and closed captions. Going to the website, it is enormous, so finding something is incredibly difficult. I know the organisation SignHealth has produced bulletins on a daily basis about the crisis. That, however, does not suit everybody; nor should it be down to a charity like SignHealth to do that piece of work.
Since the crisis has begun, there have been all sorts of concepts and vocabulary that people have never even thought about before, so it is a case of learning the language, learning the meaning of it, being able to apply it and then being able to interrogate it and find the information you need as a result of it. Furloughing, shielding, and mortgage holidays—these sorts of things—are all new to us.
Q219 Kim Johnson: Lucy, as you know, the Government have a responsibility under the public sector equality duty to ensure that all communications are accessible and comprehensible to people with protected characteristics. However, the Government messaging on Covid‑19 is largely delivered by white, male, middle‑aged members of the Cabinet. There is limited research on which groups were more and less likely to adhere to the Government advice. Would you say that improved communications by the Government would likely lead to increased compliance during the pandemic?
Professor Yardley: That is a very good question. Absolutely, that is the case. We know that adherence has been highest in older people. This is partly, probably, because they are at higher risk of infection and perceived risk is a major driver of behaviour. You are right to point out that the people delivering the messages are not the people who would command the most trust of, for example, young BAME people. Yes, we have already communicated that it is important, in the future, particularly with all the changes to guidance going forward that may be needed locally, for local community members to be very involved in developing and delivering the messages.
Q220 Kim Johnson: Lucy, do you have any research on the adherence to lockdown rules by protected characteristics? Would you know whether people became confused by the change in messaging from “stay home” to “stay alert”?
Professor Yardley: We have data about differences due to protected characteristics. For example, young men, actually, are the least likely to adhere and older people are more likely to adhere, as I mentioned. There is a lot of evidence that people with lower incomes and people with a BAME background are often less able to adhere. We know that they are just as aware of the risks and would like to adhere, but often are not able to adhere to things like “stay at home” because they might not have the resources. They might not have the financial security or other forms of support. We know they do not have the forms of support that other members of the community have, so those are other differences. What was the last part of your question?
Kim Johnson: I was asking about the change in messaging from “stay home” to “stay alert”, and the impact that has on adherence.
Professor Yardley: The “stay home” message was very simple and quite easy for people to follow. Most people did follow it. The “stay alert” message is just a shorthand for a huge number of very different and quite complicated actions that we are all going to need to take, which are still being worked out, to be honest, let alone being communicated. Even in the earlier stages of the pandemic, there was evidence that adherence was lower to the kinds of things that people have to do individually, for example staying at home when symptomatic. There was lower adherence to that than the general “stay home” guidance.
We know there are big challenges to overcome in helping people understand and follow the much more complicated pattern of behaviour that we are all going to have to undertake, especially as it is going to be changing over time, in different places and in different situations. That is a massive thing that we are all going to have to be working on. That is where we have been giving very strong guidance to the Government that there needs to be a lot of co‑design of what these behaviours are going to be, how they can be implemented, and how they can be communicated with all communities and all members of the community.
Q221 Kim Johnson: Thanks, Lucy. My next question is aimed at you and Ali. You have just mentioned certain groups adhering to the guidance, but it is clear that, throughout the pandemic, men have been dying at a higher rate than women, so would you say that the Government’s messaging worked for men?
Professor Yardley: To be honest, we do not yet know why men are dying at a higher rate, so I would not like to definitely link that to behaviour. If there is a behavioural link—there might be, but we do not know yet—it could be something like late health‑seeking rather than poor hygiene practices. It could be poor hygiene practices and that is certainly an avenue that needs to be pursued. There is also the question of whether men, for example, may have had to continue to work in higher-risk occupations, which some of them were in. It is a very complex picture. We do not really know enough yet to be quite sure about where we need to take action, but improving self‑protective behaviours and protective behaviours towards others is definitely part of the picture.
Ali Harris: I would second all that. Particularly in relation to men from BAME communities who work in low‑paid and high‑risk sectors, going forward through the rest of the response to Covid‑19, there is going to be an absolute need to make sure we reach out to and target those men with specific information. I am thinking about sectors like taxi drivers and people working in the NHS whose families will be relying on their income and may feel that they have no choice other than to work. They may not have, because of their circumstances, ease or time to access healthcare. There are issues around when people have the time, given the pressures on them, to access healthcare, relating to particular groups of men, as well as, potentially, traditional behaviours of not accessing healthcare soon enough among men.
Q222 Kim Johnson: My final question to you, Ali, is based on what you have just said. There are high rates of death from Covid among people living in the most deprived areas and those who self‑identify as black. Do you think the Government’s messages could have been more targeted to prevent some of those deaths? Do you think it would have had an impact? There has been a lot in the media this week, particularly in terms of the Black Lives Matter protests and people gathering in large numbers.
Ali Harris: In planning for any emergency or any epidemic, and thinking through all our duties under the Equality Act and human rights legislation, plus all the data we have on people’s socioeconomic inequalities, it is really clear that there are key groups and key issues where people are more likely to be affected. That certainly includes BAME communities in marginalised areas where people are living in poverty. Now, it is about making sure there is a framework and using the law as a framework to think it through. What are those issues, where are the groups and how do we design that in from the start? We are playing catch‑up.
Had we not been in that situation, it is impossible for me in my position to say, “Yes, I think there would have been fewer deaths,” but I think that could be modelled. We need to do that modelling work to look at what the outcomes would have been in scenarios where targeted information was made available much sooner, and whether we should, as a result, make sure that any future pandemic responses or any type of emergency responses take into account people who are likely to be marginalised or already facing social exclusion and discrimination.
Q223 Kim Johnson: Supplementary to that, I know that there has been some criticism of information not being available on Government sites in different languages and not all languages. Do you think that needs to be improved going forward?
Ali Harris: Yes, absolutely. No information has been produced at national level, so it has been left to either community groups or individual local authorities. That is not an efficient way to do it, for a start, but it is also about understanding that the response needs to work for everybody in the community. We all need it to work for everybody in the community, so making information available in languages other than English including community languages and BSL has to be part of the thinking.
None of these issues is new. Part of the surprise for us as equality organisations and our members is that these are all things that have been known for many years. There is quite a standard range of things you need to take into account. The Government work on far more complicated issues as a matter of course day in, day out. This stuff is very doable, achievable and knowable in advance. It would not be difficult to come up with a list of the issues, the communities and how we would have to take into account their needs and their rights.
Professor Yardley: From a behavioural point of view, messaging is only one influence on behaviour and not the most important one by any means. One of our concerns has been that some of these inequality issues are probably not due to messaging at all. They are more to do with the opportunities and resources available to different members of the community. For example, while it is not necessarily ideal for large numbers of young minority people to be out in large gatherings, being out in the open air is a much less high‑risk situation than, for example, quarantining at home for 14 days with a hospital worker who has been exposed to coronavirus. That is a much more risky situation.
Now, we know that, where a lot of people live in quite cramped accommodation, it may be very, very difficult to do any kind of distancing within the home. When they have to self‑isolate as a family household, they are putting each other at great risk. You have here people who may be in a high‑risk occupation catching the virus then potentially not being able to isolate from people in the home. These are really strong influences on behaviour that are not to do with communication. I just wanted to highlight that kind of thing happening as well.
Q224 Kate Osborne: First, can I say hi to everybody? My name is Kate Osborne. Welcome to the witnesses. My first question is to Emma and Ali. In society today, we should be making progress on adopting a social model of disability—a way of viewing the world developed by disabled people. This model notes that people are disabled by barriers in society and not by their impairment or difference. Taking this into account, do you know whether any accessible guidance has been provided during this pandemic for people with learning disabilities, and whether this guidance has been provided by the Government or a third‑party organisation such as a disability charity?
Emma Boswell: I know that this has been brought up by Mencap and Learning Disability England. They have been working on it quite consistently, because they appreciate the need for people with learning disabilities to be able to access this information. There is an equivalent service by SignHealth, another charity for disabled people, which has been providing this information, but I am not aware that the Government have done this directly.
Ali Harris: From our members, the information has been the same: they are not aware of easy‑read or other accessible information for people with learning disabilities provided by the Government, and that self‑advocacy groups and charities have had to produce it. There is a question mark as to whether any of it has been produced at local authority level. As far as I am aware, the GLA is in the process of developing some. I am not sure where that is at, but there may be other local authorities that have been produced information. We are not aware of that. It would be something to find out.
Emma Boswell: I can think of clients I work with who had particular difficulties in this area. In one particular case, a lady who has combined hearing and sight loss was trying to get information about the schooling of her child. This became something of a crisis and she appealed to the school and to the local authority. She looked on gov.uk and found nothing. Eventually she came to me to bring about a meeting to get the information she needed. These are the dire straits of a person with a disability not being able to get meaningful information directly.
Q225 Kate Osborne: Has this caused particular problems? Would it have been helpful for the Government and local authorities to provide this information?
Emma Boswell: It would have, without question. The Government, as I see it, are the lynchpin and central hub of providing information. It has to work for everybody. We are a community after all, so whatever they provide has to be accessible.
Q226 Kate Osborne: Emma and Ali, after the Government were approached by legal firms on behalf of families with children on the autistic spectrum, the Government changed their guidance to allow those with learning difficulties more exercise in outdoor spaces. Do you think this change was communicated well by the Government? What barriers do you think there were for people taking up these additional adjustments?
Emma Boswell: For those people on the autistic spectrum or who have learning disabilities, the message to be able to go out only once a day caused a huge impact, because that was a massive change to any sort of routine that they had had hitherto. I am not sure that the impact of such a message to these people with these disabilities has been understood by the Government.
It goes wider than that, because there are those people who cannot go out by themselves. They need guides, support workers, etc. That in itself was a difficulty because there is social distancing. If you cannot go out without actually being close to somebody, that is a difficulty as well. The impact could not be overestimated when it came to going to shops, chemists and having to use PPE, such as masks. For those people who have to be able to lip read, keep two metres from somebody, be by themselves and not have a guide worker is far too complicated. The initial message was challenging, frightening and worrying, but the second message got lost.
Ali Harris: The difficulties were then compounded by the general public not understanding that the guidance had changed. They did not understand, for example, that people might need guide workers with them. They did not understand how, if you have autism or a disability, and you have a visual impairment, as is the case for my brother, you cannot manoeuvre in spaces without assistance. You need somebody guiding you. For people who use guide dogs, people do not understand that guide dogs cannot social distance. There is a gap in terms of educating the rest of the public about why people need to have guide workers or guide dogs with them, how that works in practice and what they need to do.
You cannot put all the emphasis on disabled people, disabled children and their families. The rest of us have to understand. We all navigate with each other all the time and this is part of that social navigation. There is a gap there in terms of making sure the general public understand better as well.
Q227 Kate Osborne: Professor Yardley and Ali, recent data from the CQC showed a 134% increase in deaths of people with a learning disability compared with the same period in 2019. Do you think this increase is partly due to the Government not providing people with disabilities with clear, accessible information about the risks?
Professor Yardley: I cannot answer that confidently, because I do not know the research into the circumstances of that excess mortality. It may be due to communication, but, as I said, communication is a small part of the picture, and often not the most important part. If people with learning disabilities, for example, are living in communities, just as people in care homes have excess mortality, it is possibly due to their living circumstances. We cannot know what the cause is. There is always a possibility of biological explanations. You would have to make sure you had controlled for age, gender and existing health conditions. Existing health conditions are very often a cause of Covid mortality. I am afraid I cannot answer your question definitively. You need to look at all these possible factors.
Ali Harris: It was already known pre-Covid-19 that people with learning disabilities have lower life expectancy. They are one of the groups that you would want to plan for, in planning for an epidemic of any kind. That is the first point I would make.
Secondly, some of the early communications or policy decisions seemed to indicate that equality was not as important and that some groups were not as important. There were, for example, some blanket policies on “do not resuscitate” notices for older people as well as people with learning disabilities. That was challenged and stopped, and there was then communication about that. At this point, I do not think we know the extent to which that communication has reached people who needed to hear it. Decisions are often made in difficult circumstances. None the less, the law and people’s right to life is clear on that. You cannot have blanket policies on DNRs. That is discriminatory. Those things need to be looked at as well.
Q228 Chair: Can I address a quick question to Emma about the blanket policy of masks on public transport? What particular difficulties do you think will be thrown up by that policy for those who are reliant perhaps on lip reading?
Emma Boswell: Communication is absolutely key in this area. I cannot describe the amount of fear that comes from a breakdown in communication. There is also the vulnerability that somebody is thrown into. There are ways around it by writing notes, but if somebody is not willing to share a pen and a pad, there has to be a way. I have heard there are designs for clear, see-through masks, but I am not sure they are altogether developed yet. Lip reading is not just the mouth; it is the whole face. If half the face is missing, it is going to be very difficult.
If the lighting is poor, as somebody with a vision loss, like me, you have to work out whether to approach and whether somebody is receptive to communication. You have to consider safety, not only for yourself but for them. There are a lot of compromises here. Whichever way, it is going to be incredibly difficult on public transport.
Q229 Sara Britcliffe: Good afternoon. Emma and Ali, in the Government communications, people were labelled as either clinically extremely vulnerable or clinically vulnerable. What impact has this had on people with disabilities?
Emma Boswell: It goes without saying that there is going to be an impact. The description is not clear, because not every disabled person has a health problem. Am I vulnerable if I receive a text message? Some of my clients got text messages saying, “You are on a vulnerable list”. They are saying, “I am deaf and I have a vision loss, but I am not particularly vulnerable. Why am I vulnerable?” If you do not consider yourself vulnerable and you have to do online shopping, you have to put that you are vulnerable when you are not. The language being used is unclear both for those communicating it and for those receiving it. It flows away from the social model of disability, because it says “clinical” and it is looking at people as conditions, rather than as people who need communicating with.
Ali Harris: Those definitions were very confusing for many people, as we have heard. A lot of disabled people would not identify as vulnerable and nor would older people. That meant they may not have followed guidance. They did not think it was relevant to them, particularly in the early days.
We and our members saw very clearly that it led to confusion for supermarkets and other providers of essential services, in terms of whether they still needed to make reasonable adjustments for people under the Equality Act, and whether they still needed to make sure people who were not on those lists were able to access their services. That led to lots of calls to the helplines of our members, where people were struggling to access food and medicines. A lot of confusion was caused by the definitions of vulnerability. While recognising we needed some form of identification, it was not thought through clearly enough in that way.
People have repeatedly said to us that, if you are trying to support the social model of disability—and the Government signed up to the social model of disability many years ago now and all Government Departments should be following it—it is really important that it is followed through. The old-fashioned models, known as the medical model and the charity model, do not take you to looking at what the barriers are and therefore what the solutions are. They put all the “problem of disability” on the disabled person. They can take policy makers down the wrong route. They focus attention on what individuals exclusively need to do, rather than what barriers and issues we, as policy makers and society, need to address, whether that is the attitudinal issues that are going to affect people as they try to come out of lockdown and go about their daily lives, or the structural or transport issues.
If whole classes of people are categorised as vulnerable, that changes how other people think about them. It is very othering and it puts them over there. It creates divisions. It is really unhelpful because it does not allow us then to think, “What is all of our responsibility in this to make sure everybody can access what they need to do?”
Q230 Sara Britcliffe: Has the confusion led to any breaches of the Equality Act around reasonable adjustments?
Emma Boswell: The Government breached the Equality Act on a daily basis. It is there for a reason. Signs and words fail me because of what has happened during the pandemic and, more so, how this has had an influence on people’s thinking, feeling and behaving. We live in the 21st century now. This is a time for a change in attitude for access. We should have a Government that are forward looking, that see disabled people as people first—contributors, workers, people with normal lives. In fact, through the many breaches of the Act I have seen, we have been set back, because we are seen as a label. This is a Government clearly not seeing the merit of the disability but seeing the problem of it. I think we will not begin to see the impact of labelling us this way for a time to come.
It is fair to say that people like me have jobs, families and mortgages. We have very normal lives. We contribute to the economy. We expect to get the right support for everything we put in, but it seems, in my understanding and my observation, the Government have not given back in the way they should.
Ali Harris: You have said it. I do not think I have anything to add to that.
Q231 Sara Britcliffe: Do you think the way in which the Government have communicated has shifted back to the medical model of disability?
Emma Boswell: As I said in my previous answer, yes. If, at the beginning of this pandemic, there had been inclusion—if that had really been thought through—GPs and local authorities would not have been sending out letters to elderly people and people with disabilities about DNRs, as has already been mentioned. As I have already said, it steps us back because it has not been thought through. It has not been actioned.
The hospitals have been a nightmare for people with complex disabilities, deafblindness, autistic spectrum, learning disabilities etc. Initially, people had to go to hospital by themselves and were not permitted visitors. That included guide workers and helpers. For somebody with a complex disability, it was more or less being cascaded to death, or at least certain isolation. That would be a travesty. For somebody like me, and I know lots of people like me who have children, families, partners etc., that is a very difficult position to be thrown into.
Q232 Sara Britcliffe: Ali, do you think, when the Government have been communicating, they have shifted back to the medical model?
Ali Harris: Yes, our members definitely think that. It was a cure or care response. I think part of the reason is this. Whenever you look at health issues and the medical system, outside of preventive public health, health is driven by individual patient needs, quite rightly. It sets a mindset for thinking about individuals rather than the structural issues. That is what the social model of disability is all about. It is about thinking what the issues that we can change are. For somebody who has and is always going to have a certain condition, having that condition is a neutral. It is neither a good thing nor a bad thing particularly, per se. The thing that disables them is not the condition; it is how society responds to that condition.
It is understandable that, if you look at it through a medical lens, you think about individuals or patients. The pandemic is not just about the health response. The pandemic has to be about the social and economic response, and across the piece. The social model is looking at where the barriers are in our attitudes, in the way that public transport is going to operate and in our workplaces. We have heard that there is a lot of confusion for employers over people going back to work and how reasonable adjustments for disabled people will work in the workplace, as well as for people in other areas of work. We have heard that the employers of people living with HIV are really unclear about what they need to do. A social model approach, which is all about how we change our policies and practices so that people can fully participate, whatever that looks like in Covid-19 circumstances, has to be the approach we take.
Q233 Sara Britcliffe: My final question is to Professor Lucy Yardley. Should there be research into how the Government have communicated to people with disabilities and how this has affected their compliance?
Professor Yardley: There should certainly be research in this area. I personally, as you probably gather from what I have been saying, would put it further than just the messaging. It would be really useful to have research into experiences of some of the things that have been described here.
Going forward, we do not know how long people’s risk status is going to affect their ability to engage with a range of situations. It is an incredibly important issue. Certainly temporarily, we have a new kind of disability, in terms of people who may not have had a disability before, but either they are at high risk or, indeed, if they live with somebody at high risk, there are various activities that would be quite problematic for them to engage in, unless particular measures are taken. This is really important in employment, for example. At the moment, employers may not be making sufficient provision to protect people who are not themselves at high risk, but live with somebody who is at high risk, and so on.
There are a whole load of issues to be thought through here. The messaging and how that affects adherence is one issue, but there are a much wider range of issues, some of which have been talked about this afternoon.
Q234 Chair: Emma, I think Sara asked you whether there had been breaches of the Equality Act. This may be a very difficult question for you to answer. We saw Parliament return, fully physically, with the ending of remote voting. The previous method of remote voting enabled Members with disabilities, those who were shielding and those with caring responsibilities to vote from home. Do you regard that as a reasonable adjustment? Did the end of remote voting potentially breach the Equality Act?
Emma Boswell: I am trying to think about this from two perspectives. I understand the work-life balance and where it works best for most people. My colleagues at Sense would be able to give you a lot more information on this in written evidence later. For people with disabilities, the workplace is complicated. As has been highlighted, there are certain issues for those working with people who are at higher risk. Perhaps we can come back to this and I can submit something later by my colleagues at Sense. I get the point about alternative ways of working, be it by Zoom, FaceTime, Teams or whatever. It has to work for everyone.
Chair: I very much hope that you will submit that in writing in due course.
Ali Harris: I suppose the question I would ask is why you would not enable people to keep working remotely in Parliament. That is what reasonable adjustments are all about. Yes, you would want to explore that.
Q235 Chair: I have a question to Ali about people without recourse to public funds and their ability to understand the messages, receive them, act upon them and be supported in this time. Do you have any particular concerns about them?
Ali Harris: Yes, certainly. People without recourse to public funds are among some of the most marginalised and at risk in the UK. For various reasons, they often have little trust in official institutions. They are concerned about what might happen to them if they come forward, so there are a huge number of issues for them. It is very good that Covid‑19 testing and treatment has been made exempt from the no recourse to public funds conditions, but little awareness has been raised by the Government among migrant and BME communities that that is the case. There is more to be done there.
Where a health condition is identified as not being Covid-19-related, healthcare charges can apply or are applied. People do not always know what the condition is. It may look like Covid; it may be something else. Those elements together combine to mean that people with no recourse to public funds who are unwell are less likely to come forward for treatment, for fear of incurring debt, for fear of being reported to the Home Office and for fear, if they have their families with them, of what will happen as a result of that. There are a number of issues.
We feel strongly that women and children experiencing domestic violence who do not have recourse to public funds should be entitled to access state support. That includes information and guidance so that they are able to be safe. That has to have priority.
Q236 Bell Ribeiro-Addy: I want to ask Ali specifically about the Gypsy and Roma community, and communication with them throughout the pandemic. I know, for example, there has certainly been a history of cash-in-hand work and issues with IT skills. That has been a problem overall with applying for universal credit. In this situation, certain agencies are not open, like your local library, where you might use a computer if you did not have one at home. We know that people who are self-employed have had quite difficult issues. This would definitely affect people from the Gypsy, Roma and Traveller community. Could you answer whether you think the Government messaging has been accessible to Gypsy, Roma and Traveller communities overall?
Ali Harris: We have had evidence and spoken to our members who work directly with Gypsy, Roma and Traveller communities. They have told us that there have not been any direct communications to communities. Guidance has been developed by the charities and community groups themselves. There are now, latterly, meetings happening with DCMS, so things are starting to happen. From our perspective, Gypsy, Roma and Traveller communities are one of the most socially excluded groups. In terms of advance planning, it is one of the groups that you would anticipate, already understanding what the issues are likely to be.
We know that an issue they have faced so far is difficulty with compliance with some of the guidance. As Professor Yardley said, there are communities where the issue is not lack of willingness; it is lack of ability, because of circumstances outside their control. The sorts of issues we have been hearing about are communities having difficulties following handwashing guidance, due to lack of running water and sanitation in roadside sites particularly, which is down to pre-existing inequalities and lack of adequate site provision for Gypsy, Roma and Traveller communities.
You mentioned education and access to IT. There was a survey done by one of our member organisations that showed that around 70% of Gypsy, Roma and Traveller children and young people do not have all the IT kit they need, which impacts on their education. There are issues around loss of employment, obviously. This is a point that goes more broadly to other communities. There is increased hate crime and hate speech targeting Gypsy, Roma and Traveller communities and scapegoating, even though spread of the virus is absolutely nothing specific or related to them. There is a scapegoating going on that is impacting on those communities.
Other issues are around spread of misinformation, health myths, anti‑vaxxing information, particularly within or targeting Gypsy, Roma and Traveller communities. Really clear information and advice for those communities that is trusted and they can rely on, rather than the myths and other things that are going around on social media, is needed.
Q237 Bell Ribeiro-Addy: A lot of that is even more worrying than I had thought. My next question was about water and sanitation issues, because that is a huge part of the guidance and a general issue anyway. We know that the coronavirus has exacerbated inequalities across a lot of different protected characteristics. I was wondering what evidence you had seen of local government and the Government putting measures in place to specifically communicate with and protect Gypsy, Roma and Traveller communities. Given that these things would have become quite obvious quite quickly, do you know of anything that has been done specifically?
Ali Harris: My understanding is that good practice has been developed in Wales, in terms of provision, support and access to information for Gypsy, Roma and Traveller communities. Overall national UK-level Government information is only now starting to be developed. One meeting has taken place between DCMS and Gypsy, Roma and Traveller organisations, and another one is happening this week, looking to adapt guidance that exists for other groups. Again, we need to make sure that preparations in future take these issues into account from the start.
Q238 Bell Ribeiro-Addy: Finally, is there anything the Government could do to improve this? Taking issues into account from the start would be the basis for challenging, to make sure, when coming up against any sort of inequality, they have taken stock of it initially. At this very moment in time, is there anything you think they could specifically do?
Ali Harris: Clear guidance to local authorities about meeting the needs and rights of Gypsy, Roma and Traveller communities, particularly roadside Travellers and those living on sites without adequate provision.
Q239 Chair: We saw at the beginning of the pandemic quite a lot of misinformation, rumour and confusion. Do you believe there has been any lasting impact from that?
Professor Yardley: I am not sure which misinformation you mean at the beginning of the pandemic. There is continuing and ongoing misinformation. It is certainly a concern. For example, there are concerns about vaccination and misinformation about what the possible causes are. Yes, this kind of misinformation is an ongoing concern.
The discussion we were just having is very relevant because, as infection levels fall in the population as a whole, there are likely to be outbreaks in future. The outbreaks are more likely to occur in at-risk communities. These are often people living in disadvantaged circumstances and doing high-risk jobs, who have protected characteristics. That can lead to a really problematic situation of them being more vulnerable and then being seen as the centres of outbreaks, and therefore discriminated against for that reason. There needs to be a lot of attention on how to deal with that potential problem.
Ali Harris: Patterns of behaviour established early on are quite difficult to undo. Particularly now that large groups of people are characterised as vulnerable in ways that are not helpful, there is a lot of work to be done to undo that, in terms of the impacts it will have on their ability to get back to normal life and cope with the ongoing consequences of Covid. Our services and systems are now characterising them in that way, rather than thinking about the need under the Equality Act to make reasonable adjustments etc., and to see people as equals in worth and in rights. There is an issue around that.
As I mentioned, there is still misinformation about health and the likelihood of infection. Myths are circulating around communities. That still needs to be addressed, from a public health perspective. There is a gap that we have not talked about but is really relevant. That is a need for the Government to put out messaging in a whole range of ways to prevent and counter hate crime against specific scapegoated communities. That is either online or now, as we are coming out of lockdown, we have been hearing about people being scapegoated. That is often for spreading Covid-19, and can affect particular communities, such as Chinese, Muslim and Gypsy, Roma and Traveller communities.
We have also heard instances of gay men being assumed to have HIV and be spreaders of HIV and Covid, and issues like that happening on the streets and in neighbourhoods. There is an issue to be looked at of how we make sure further division is not sown between communities, and Government messaging and communications around that.
I said at the start that we had concerns about certain messages. Messages were identifying certain groups as being more at risk in ways where there appears to be blame attached to those groups, where, when you look under the surface, the issue is not those communities’ willingness to address the issues. The issue is the circumstances they are living in. Sorry, I was slightly lost in my own head there. It is really important for the Government not to allow a blame game going forward. That is something that is within the Government’s gift.
Emma Boswell: I agree with Lucy and Ali entirely. There were excellent points made by both of them. Government need to have clear and simple information that is accessible. We get misinformation. It comes directly and goes through all sorts of filters as well. Then, when it gets to a community basis, it is about interpretation and what one person has understood about something that is hugely ambiguous to understand anyway. I have worked with groups in the community and found very differing and disparate understandings of advice that has been given. This is hugely risky because it breeds even further misinformation. The Government need to get a handle on effective communication with communities and to make it clear, simple and easily understood.
Chair: Can I take this opportunity to thank our witnesses for participating? It has been an incredibly useful session this afternoon. I would like to say a particular thank you to Richard, who has been working very hard, and bring this session to a close by saying thank you and goodbye.