Table 4 Effect of the pandemic on overall care
1 | Cancellation of support services | “Our primary concerns immediately were the fact that all his therapies that he relied on and made his week what it was where just stopped overnight. So, immediately that was our concern.” “We were just actually starting with the chiropractor. […] And we had an appointment and then that was cancelled and we were going to do that regularly with her to go to a massage clinic, well it’s called a Wellbeing Centre, so we were looking forward to doing that. But that hadn’t started so that was something that she wasn’t missing, she just hadn’t started.” “The physiotherapist from [CHILD 1] school, that there is really no contact whatsoever with them. And I really feel that [CHILD 1] is missing a lot as a result of not having, me not having contact, me doing nothing with him. Not knowing what to do with him at home.” “One very specific thing is going to back to the physiotherapist at [CHILD 1] school. […] I don’t have high expectations of what they do daily something with [CHILD 1], but at least to give me something, some exercises, examples that I could do with [CHILD 1]?” “The main lockdown of [swimming facilities] being shut and [School] being shut, she was just here with us, wasn’t she? And can’t access like anybody else would’ve. You can’t let her go online on her own, things like that, whereas, other children, other young adults, would.” “Then what’s not worked is just the lack of professional involvement from, well, it’s been across the board. Not having that input that we need more so with them regressing more. Me not being able to have a break. I’m going into robot mode at the minute.” “The 7 months of therapy that everybody has lost because obviously you can do things like Zoom and different bits and pieces but the hands-on therapy… it’s a lot of story massage, […] so it’s a therapy class so it’s music therapy. It’s massage therapy, it’s Rebound Therapy, it’s hydro, it’s physio, so that’s five, six hours all day she’s getting good stimulation in what she needs. Obviously, at home we do the same but you can’t do as much as they would do at school. […] It was the physical things and having the physios on-site to look at the children every day.” “It was making sure that the physios and OTs could keep up what they were doing and keep up with their progress just so they could support them […]. Things in the house like the stairlift to become unsafe. I needed to make sure that I could keep them safe around the house so I didn’t have a choice but to get people involved and have people round. […] Even though it was scary, things like coming to the house and they wore full PPE. I did make sure that I wiped down with anti-bacterial wipes after so that adds more pressure on me after having more people around.” |
2 | Closure of specialist schools/respite care | “[Child 1] has got a gastrostomy and she needed to get it changed, so we had to have the nurses come out to the house to change it. So they came in at the door, they put full PPE on at the door, you know visors, gloves, aprons, and then [Name] is actually trained in it thankfully so they had to just come to observe. […] and signed him off. And so that was new because that would just have got done at the school. But thankfully that could be done at home so it was all very accommodating.” “One very specific thing is going to back to the physiotherapist at [CHILD 1] school. […] I don’t have high expectations of what they do daily something with [CHILD 1], but at least to give me something, some exercises, examples that I could do with [CHILD 1]?” “I think it’s the childcare aspect. I think, for me, just the hardest thing of this season is that I’ve been [name] main carer. […] has made it harder to call on people for help because they’re not allowed in your home. And so, for me, personally, I’ve felt quite exhausted because there’s been no stop, no breaks. It’s full-on, and I think that’s probably the hardest thing that’s been drawn out of this.” “The main lockdown of [swimming facilities] being shut and [School] being shut, she was just here with us, wasn’t she? And can’t access like anybody else would’ve. You can’t let her go online on her own, things like that, whereas, other children, other young adults, would.” “Then what’s not worked is just the lack of professional involvement from, well, it’s been across the board. Not having that input that we need more so with them regressing more. Me not being able to have a break. I’m going into robot mode at the minute.” One family received 2 h’ every other week, where someone came in the house and watched the two children with CLN2 disease so the parents could have time by themselves or spend one-to-one time with the third child and bring the child somewhere. During COVID-19 this help stopped. “Even though it wasn’t a lot, it was a designated time where we could just think, right, we know for a fact we’re going to get a break.” |
3 | Detrimental effects on children | “I just think when we were all completely locked down, […] child 1 seemed to deteriorate such a lot with not having any physio, not having much to stimulate her mind and things.” “From all of his therapies, he declined. We saw him physically decline in speech, core stability, being able to go from sitting to standing. All these things just stopped. He stopped walking. He was having someone to hold on to. All this happened during lockdown. I do believe though if his horse-riding had carried on and his swimming, and his conductive education, and his speech and language and music therapy, if he had all of those things and he carried on going to school he would be in a much better shape now than back then. Actually, we have seen a real upturn within one or two sessions of him starting conductive education in September. He took about eight steps walking unaided. It’s having that professional expert input which is so important.” “I definitely think, during that big lockdown, that she lost a lot of skills, communication skills, motor skills, mobility. I just felt like I was watching her just deteriorate in front of my eyes. […] I bought all sorts. […]I just felt like I was watching her go downhill. I do feel better now that she can go to school.” |
4 | Virtual meetings were unsatisfactory for some whereas some saw benefits | “We had the Zoom kind of diagnosis meeting on the Wednesday, […]another Zoom Meeting on the Thursday “Even now, we still haven’t ever met her paediatrician face-to-face. That was one of the impacts of COVID that we were under investigation, but never actually got to see the paediatrician” “[Child’]s eye ophthalmology test, it was done over the phone which wasn’t ideal and obviously it’s not in-depth at all.” “Everything else was done in Zoom calls or we just emailed. So it strips away the unnecessary things that you normally do […] finding a car parking space, stressing to get the wheelchair out […] It’s just far more effective and efficient.” “And the most helpful or grateful thing is definitely the meetings on Thursday, the Zoom, the opportunity to get to know other families who are experiencing or go through similar experiences.” |
5 | Cancellation of assessments | “He was supposed to do a sleep study but we’ve delayed it now even further because of lockdown […] There was a urology appointment that he was supposed to have which, obviously, that got stopped as well […]it wasn’t a huge problem or affecting his health. There wasn’t anything where we felt he really needs to have this now.” |