UK Covid-19 Inquiry – day 3 hearing
In today’s third hearing dedicated to children and young people, the Inquiry heard from Nuala Toman, Head of Innovation and Impact, Disability Action Northern Ireland, representing Disabled People’s Organisations, Sammie McFarland, Chief Executive Officer, Long Covid Kids, and Kate Anstey, Head of Education Policy, Child Poverty Action Group. It also heard from Lara Wong, Founder, Clinically Vulnerable Families, and Dr Rebecca Montacute, Former Head of Research and Policy, Sutton Trust.
Below we provide extracts from Nuala Toman’s, Sammie McFarland’s and Kate Anstey’s evidence. The full official transcript for today’s hearing can be found here.
Nuala Toman, Head of Innovation and Impact, Disability Action Northern Ireland, representing Disabled People’s Organisations
“One of our service users, who is a young man with Down’s Syndrome, could speak and articulate, you know, prior to the pandemic. He is no longer verbal because of the lack of access to speech and language services at this time.”
- Ms Toman was asked about the impact of school closures, and then reopening, on disabled children in Northern Ireland. She said: “Decisions were often made in respect of what was happening in other jurisdictions rather than what was required within Northern Ireland. So, the schools closed quickly prior to wider school closures. Parents, children, guardians and families were left without access to health and social care and without access to education. When schools did reopen, that was, from our perspective, as a result of wider societal pressure because people were left with very limited options. So, once there was pressure put upon the system to reopen, then some schools did reopen. But that didn’t mean that children had access to education. Provision was patchy, difficult to access, risk assessments were difficult to access and to navigate. Families were overwhelmed by both the lack of specific information in relation to their child or children, and the more generic information that was publicly available through media, and this led to a very challenging time. Some of the easements around looking at, you know, the move towards like reasonable endeavours led to an erosion of children’s rights. I mean effectively what we saw during the pandemic is that children lost their right to access education”.
- Asked to reflect further on the dilution of disabled children’s legal rights, Ms Toman stated: “… what we saw was a regression in children’s rights, and again, these changes were enacted without consultation, and often parents, children, carers, found out after the event … the reduction in entitlement from our perspective led to the further invisibility of disabled children and young people, the standards of provision dropped, access, you know, access to wraparound service provision also dropped. So, not only did disabled children not have access to education, but they also didn’t have access to all of those important services like physiotherapy, occupational therapy, occupational health, speech and language, sensory provision, which ultimately led to regression, and we have yet to see the visibility of disabled children and young people returned to pre-pandemic levels. And from our perspective, some children, some disabled children and young people’s lives have been destroyed”.
- When pressed by Lady Hallett to consider the urgent crisis facing the country, and government and services, Ms Toman responded: “it all comes back to engagement and co-design, and there is a timeline for the pandemic, you know, in terms of those winter months … when cases emerged, where disabled children and young people, families and carers could have been engaged with, identified, and measures put in place. I mean, for us, we are the organisations and we work with organisations who have the solutions and an understanding of what should have been prioritised, and those conversations did not happen. You know, sometimes the focus around social distancing, PPE, and all of those measures took away from the human element, and what, for us, the starting point should have been – how do we identify disabled children and young people? How do we know where they are and how do we ensure that they have access to the best possible provision that they can have … during a national emergency? And there are simple things that could have been done like consideration given to how do we provide health and social care safely so that the burden isn’t placed on informal carers?”.
- Asked directly whether changes to statutory duties should not have occurred, Ms Toman stated: “There was a better way, without doubt. You know, even as we sit here today in this Inquiry, while I’m doing my best, I do have to say that it is different because I am not a child or a young person. And one of the most serious aspects of the pandemic is the lack of voice that was given to children and young people, and measures like … the introduction of reasonable endeavours without consultation, without input, you know, led to further erosion of rights. And I think we have yet to see services reinstated to pre-pandemic levels, and to see that those rights are upheld. From our perspective, we feel that working with children’s organisations, Disabled People’s Organisations, and others, that a stability of service provision could have safely been maintained, and that may not have been perfect but it would have been better than what happened”.
Sammie McFarland, Chief Executive Officer, Long Covid Kids
“Our information wasn’t misinformation, the misinformation was hiding the facts from families.”
- Ms McFarland told the Inquiry about her daughter Kitty’s experiences with the NHS, stating her family have had to pay for private health care: “My daughter and I both got Covid in March 2020. Me first, and Kitty very quickly after. My daughter, she had initially mild symptoms and then, within four weeks of the original infection, it became very clear that she was not recovering. Initially, her symptoms were high fevers, her skin was translucent, she couldn’t feed herself, she couldn’t do her personal care, she couldn’t leave her bed. She would crawl along the landing to get to the toilet, being upright on the toilet was impossible for her. She would have seizures. She had severe pain, heart palpitations. It was horrendous. She still lives with those symptoms, although better managed but only because we’ve accessed private care. That’s been life-changing, and as a family at the time there was no information. One time we tried to speak to healthcare professional at a medical appointment for me, because they were not giving medical appointments to children at the GP’s surgery, and I was told that my daughter was mimicking my symptoms even though they had never seen my daughter, and that she would be fine when she got back with her friends. Later on, we tried to call 111 and … we were told if she was breathing, she didn’t need medical help. And we were so terrified, we were doing 20-minute observations on her because she was unable to talk, and yet they just kept saying that children didn’t get sick and because of that, we just couldn’t get anyone to believe us. The implications were it … was a mental health problem because she was not with her friends, and yet she was desperately, desperately sick”.
- The Inquiry took Ms McFarland to an internal document produced by the Department for Education in May 2021, which described as “misinformation” an education pack produced by Long Covid Kids. She was asked how she felt when she read that, and responded: “I was angry. We tried so hard to raise awareness and to get people to listen, and when I read that, it may made me realise that we never stood a chance of getting the truth out because they didn’t want it to be out. Our information wasn’t misinformation, the misinformation was hiding the facts from families”.
- Ms McFarland was asked if her group had ever been invited to the Department for Education’s Permanent Secretary Stakeholder Group. It hadn’t. She was taken to the advice of a Public Health England representative given at one of these meetings – that children should not be labelled with Long Covid. Ms McFarland said: “It cut me to the absolute core when I read that. That’s the evidence that should be representing my child and the other children. And he says ‘label’, I say ‘diagnosis’, and without a diagnosis, our children were unable to access care or to be believed, and that put additional pressure on families and children and young people themselves. It brought additional stigma. It makes me wonder if they wanted a barrier to stop our children being diagnosed, because they didn’t want people to understand the amount of children that were getting sick”.
Kate Anstey, Head of Education Policy, Child Poverty Action Group
“… those vouchers [in place of free school meals] were Limited to certain supermarkets. In the first instance, families couldn’t get change back to it. It had to be spent all at once … some of these families were living very far away from the places that they were able to buy food from. So, actually, it was quite chaotic in terms of whether families were or weren’t able to access that food, and our understanding from the data is that only around half of families who were eligible were accessing provision in April 2020 … We did see in Scotland and Wales lots of local authorities moving to a cash-first approach.”
- When asked whether child poverty rates are generally consistent across the four nations of the UK. Ms Anstey replied: “they do vary slightly across the nations, particularly in Scotland. Child poverty rates are lower and that’s because there are certain policies that have been put in place in Scotland to mitigate some of the effects of child poverty, things like the Scottish child payment, for example, have worked to bring down child poverty rates but across the other nations child poverty remains around 31%, 30, 31%, and that is roughly kind of nine children in a classroom of 30 when we’re trying to sort of visualise that. And that is a number that has been steadily rising … at UK level particularly since 2010, and some of the drivers of that are some of the cuts and freezes that were made to the social security system during the 2010 period. So to pick out a couple – the two-child limit and the benefit cap are particular causes of kind of rising child poverty over that period”.
- Asked about school closures and lack of devices at home, Ms Anstey told the Inquiry: “this came thorough very strongly from children and young people: that not only were they, I suppose, in terms of wellbeing and mental health, they were very stressed about falling behind … they were very worried about not being able to keep up, the fact that they couldn’t access lessons, or feedback from teachers meant that yeah, their concerns about their education were very strong particularly for teenagers. But … that kind of social, the connectivity, was also a big challenge for families. So not being able to stay in touch with friends, not being able to join some of the lessons that were kind of group lessons or group activities, not being able to get feedback from teachers or have conversations with teachers as well was also a challenge and I think what we heard from children and young people is that they felt more and more isolated and cut off, and therefore [their] worries and anxiety grew within that”.
- Ms Anstey was asked to set out the Child Poverty Action Group’s recommendations in the event of a future pandemic: “… providing cash for support to families when you need to replace free school meals … that was very much the best and most efficient way to help families during that period and it didn’t have the same challenges as other options. So cash first support is something we would call for. Making sure children have all that they need to take part in learning is also really crucial, and … we still continue to see in our research today that children can’t fully participate in education because they don’t always have everything they need, whether that’s for home learning or learning in school … We were very clear about the recovery and investment in recovery looking at children in the round so not just thinking of them as vehicles for learning and attainment, but also thinking about how they can be best supported in terms of their mental health and wellbeing and kind of reintegration back into school and we felt that was significantly overlooked. Another recommendation from us was that wraparound care … should have been a really important part of the recovery so making sure that before and after school provision was available. [This] has kind of academic benefits, but it also is an opportunity for children to socialise and play, take part in extra curricular activities, and it supports parents to work more if they choose to. So those were some of the recommendations that … we called for during the pandemic … I think we’re very clear that children and families need to be protected to protect them inside a pandemic you have to protect them outside of a pandemic as well. So, of course, we include in that making sure the social security system is adequate so that families have enough money to support their children and meet their needs, and there are obviously certain changes to the social security system that we’d like to see to address that but adequacy being the main thing. Beyond that, I think there are frameworks that could be put in place to make sure that children’s rights are very much embedded at every level of decision-making in government. So others have called for this as well, but we would certainly support calls around incorporating the UNCRC [United Nations Convention on the Rights of the Child] into domestic law. And that’s a good way to make sure that children’s rights are considered and prioritised. Alongside that, making sure that children’s rights impact assessments are a statutory requirement. Again, that provides a framework for children’s rights to be understood and acknowledged and to understand what impact policies and legislation will have on children. And then, finally, having a Cabinet Minister with responsibility for children. And, I think, that is really crucial to have somebody at the very heart of government who is representing and advocating for children when critical decisions are being made. And, at the moment, we don’t have [that]: we have somebody who is responsible for children’s education, but that doesn’t consider children and their rights in the round”.