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Table 3 Families’ comments and concerns about the effect of restrictions on diagnosis and access to the MAA

From: Impact of the COVID-19 pandemic on access to the cerliponase alfa managed access agreement in England for CLN2 treatment

Diagnosis

1

Delayed diagnosis/tests, and potential effect on child

“A few days later, we were into lockdown, so all of those types of tests and scans were put on hold, so [Child] didn’t actually get his MRI and genetic testing done until… It was July I think, June or July.”

“Pre-diagnosis they were going to give [child] an MRI scan. But then, COVID happened and then she wasn’t allowed to have the MRI […]. So we would have known sooner. […] Looking back, you think it’s only a couple of months but a couple of months while [child] regressing so quickly makes a big difference, so potentially we could have learnt that there’s something genetic going on with her because the MRI shows the smaller cerebellum. We could have known that that in June, as opposed to September.”

Concerns about continued access to treatment

2

Fear of losing access to treatment because of hospital closures

“However, I personally was afraid and started imagining thinking that the hospital would be closed down as well. That they would stop the infusions, that we would be asked not to come. But no, luckily nothing happened of that type. And no delay and no cancelation.”

“I was absolutely terrified that they were going to stop the Brineura. I’d heard that some of the medical treatments were stopping for people. I was just absolutely terrified that they’d just not offer the treatment at all to our children, knowing how aggressive Batten’s disease is.”

3

Possible delays if child or family required to isolate

“Some concerns […] in terms of if [child 1] had to self-isolate and so on and so forth, whether he would then be delayed access to the therapy. Those were my concerns but we were rest assured straight away that the therapy would continue.”

“There should be a process which still allows a child to have [the infusion]. Or is it safe for a child who might have a positive result? Does that have an impact on receiving treatment for them, personally? And so, then you can understand the need to wait, but then, if it doesn’t, is there still a process around being able to access the treatment?”

Communication

4

Families were told by BDFA and by nurses and staff at GOSH that treatment would continue, by email and while visiting GOSH for infusions

Families were impressed and reassured by communications about precautions and safety measure put in place, and were not concerned about continuing to attend for infusions

“We got an email saying treatment will continue. I think it was pretty much us asking the question and getting the answer back from Great Ormond Street. Whoever it was there.”

“We had a contact from the hospital, presumably from [name] and I had a few emails going backwards and forwards as well. So, yes overall I was very happy with the communication.”

“No. I don’t have any. I am really glad or even happy that they keep happening and [CHILD 1] and myself, we just know that whatever happens, that we are going to London every two weeks. That we have to be there. Whatever is happening around us, we just know that we have to go, and luckily we can go, we are going.”

“And I thought, well, gosh, we’ll probably have quite strict protocols and guidelines that they stick to and testing and… So the thought of kind of catching it there I felt would probably be quite low.”

“I got in touch with Great Ormond Street. They confirmed straight away that things might be a little bit different in the hospital in terms of how many parents could go in, and things like that, but they definitely would not be stopping the treatment because it was a critical treatment. So, there’d be no way that treatment would stop. It might just be that they had to take on extra measures themselves to keep us safe.” “I was told everything that would happen. There wasn’t anything flagged up that I wasn’t already told about. Like I say, the staff have been absolutely amazing and talked us through the whole process and everything. We have managed to build up relationships with the staff so that we knew if anything else had to take place like before and after infusions that we were aware of everything.”

Hospital visits

5

Anxiety due to risk of coronavirus infection

“.., on one of the first visits when we decided to drive because we were panicking about the train, there was an article on the morning that said there’d been an outbreak in GOSH and it was describing how many were infected. And then doctors and nurses were having to isolate and that was a panic because we thought, oh my goodness. It was like headline news and we thought we’re just on our way there now. But actually in fact when we got there we just felt completely safe.”

“I think we were quite scared. I was very scared about going to the hospital because we were told that they were using children’s hospitals first to deal with overflow. And so it was a little scary in the beginning how we were going to manage the hospital bed availability and things like that.”

6

Families were reassured by safety measures such as security at door to remind entrants to sanitise hands and put on clean mask; trails marking routes around the hospital, reminders to keep distance

“We felt safe. And then when we got there the nurses were so lovely and so reassuring and extra nice and extra sensitive because they knew we were all in a bit of a panic and like oh God, it’s the first time we’ve come down and we’ve made it.”

“It just put my mind at ease straight away, as soon as I spoke to them.”

“Every time I’ve gone, there’ve been at least two security guards on the door… And sanitise your hands as well. Once you’re on the ward, it’s a little bit different, and you really can take your mask off but walking through the actual hospital that is… It was just treatment as normal with extra precautions.” “when you walk in, there’s the cleaning station, sanitising station, there’s usually somebody on the door. […] I can see there’s a difference there as you walk in. There’s the routes. You’ve got the left-hand side routes through that they can see your route through the hospital is marked, a little bit.”

7

Families were reassured by witnessing nurses changing PPE and washing hands and the ‘business as usual’ attitude

“Yes. I’ve noticed that the staff, whoever I’ve got contact with, mostly nurses, they do comply to the new procedures, and I can see them wearing and changing and really changing PPE. And washing hands and remembering and keeping distance as much as is possible.”

“The nurses are amazing and the atmosphere hasn’t changed. Everyone is lovely and friendly and you don’t get the impression that anyone is worried up there. It’s all business as usual and it’s been just as fun for [child 1] as ever.”

8

While staff were in PPE, they did their best to ease distress to children by wearing patterned masks and coloured scrubs

“You just soon got used to them putting the masks on and they had normal masks. And then I think some of the colleagues had made ones with brighter colours and brighter patterns because some of the children were getting distressed because they couldn’t see the person and it looked a bit foreign and a bit alien. […] later on in the lockdown …they got different scrubs and they had pink on and blue and tried to make it as friendly as they could for the children, so that was nice… She was in the full top to toe pink and she had a Disney lanyard and all this, so it was lovely.”

9

One-parent rule was challenging

“It was hard[er] to get used to the one parent rule. They were kind to us and they did allow us to be together at points, because we had a new diagnosis.”

“I was there on my own with both children when they had the brain surgery. […] I’ve always been down in recovery with [child 2] when he comes out of any type of surgery or when he has been put to sleep. I couldn’t do that at Great Ormond Street.”

“In terms of safety, from the hospital, I didn’t have any concerns. It was harder to get used to the one parent rule. They were kind to us and they did allow us to be together at points, because we had a new diagnosis”

HCP: “If they have more children, then who are they supposed to leave the children with? I think we need some concessions occasionally, to certain families, in certain circumstances. But otherwise, yes, there was the rule, and I think it still is the case, that only one carer can come in.”

HCP: “During the pandemic, having one parent there is obviously completely difficult for parents, and other children were off school as well. And they were trying to isolate as much as possible and trying to gain childcare for their other children. We understand that’s completely difficult as well for them all.”

Travelling and accommodation

10

Extreme anxiety using public transport

“Anxiety, particularly, for us with child 1. You want to stay out of the way and reduce your risk, but we still had to get on a train to London every fortnight. I think that was our biggest, and still is, perhaps, our biggest potential exposure. […] and the fact that you’re going through a railway station, two railway stations, sitting on the train.”

“We were too frightened to get on the train in the first lockdown. […] I felt like when we first were going down there, I felt like my heart was beating too fast. I don’t know. It’s really hard to explain because I’ve never felt anything like this before. […] I think it’s just because I’d got myself so wound up and anxious. I was thinking, right, if I don’t take her, she could die. If I do take her, she could die.”

“Absolute nightmare. At the very beginning, we thought right, we’ll go by train and then when it was in the height of it all and we just thought, oh God, no. And then I started getting really anxious. I started crying on one of the journeys home. I just felt completely on a different level of anxiety and paranoia and I was like who are they and why are they sitting here? And they shouldn’t be travelling. They could’ve been a doctor or they could’ve been anybody but I was just like well why are they sitting next to us? And then I started crying and I couldn’t, it was awful. I just didn’t want the children to breathe or move or do anything on the journey up.”

“Probably, the risks are there, aren’t they, in terms of catching Coronavirus but I’ve kind of just accepted that that’s the only way we can really get there.”

11

Concerns about putting other family members at risk

“It made me feel like I was putting my dad at risk, even my mum, being in the house because we were travelling to London, which is quite a hotspot for COVID. I know at one point, GOSH did have COVID patients in it, children that had COVID. […] I just felt like I was putting my dad massively at risk, but the risk of [child 1], something happening to child 1, felt greater. So, I felt a bit stuck between the two, but there’s no way I could have not taken her for the treatment.”

12

Accommodation

“We stayed in serviced apartments […] That was all right but again that was stressful because we went in there and we cleaned everything and we didn’t touch the handles and we would tell the children, don’t touch that. And the communal lifts like, don’t touch the lift buttons and that […] so that was quite difficult.”

“[…] we thought staying in patient accommodation was too risky. So, we were getting up at 3 in the morning, driving down there, child 1 was having her infusion.”

“…have to feed him in the room because there is nowhere suitable for him to sit. You are going backwards and forwards to the kitchen and if there is someone in there you are not supposed to go in. You are not supposed to go and get your stuff out of the fridge. So, technically speaking, I would have to wait perhaps 20 min before I could even go and get the fruit out of the fridge to take back to the room for him to eat. You can’t really hurry [child 1] with his eating.”

“Again, you get into that routine. Even when we get to the hotel, and we stay the night before, the first thing I do is sit child 1 on the edge of the bed, and go around with the wipes. It’s not that I don’t think they do a good job of cleaning the place. They do. It’s just in the back of your mind, you just think, I’m happy if I go round and clean all the surfaces that child 1’s likely to touch, now. I’ve got that, so I can forget it, then. So, it’s things like that, that we do. We manage them [concerns] by our cleaning frenzies when we get there or get on the train”

“Yes. Well, we used to get on the train and we kept the children in the buggies. And me and [Name] both had a set of [bleach] wipes and a set of sprays, so we would go and spray the seats, the windows, the curtains, the handles, the doors, every single thing in that little bit of carriage where we were going to be sitting. So that was stressful enough because you’re already anticipating, oh, I can’t just go and sit down.”

“It was just pretty plain sailing when we went down on the train. It wasn’t as stressful as I thought seeing the staff had thoroughly cleaned, but I think it was just me and my worries which was the reason why I cleaned it again”

“And the best options for me to continue [CHILD 1] infusion going to London, was by car, to get there by car to avoid public transport.” “I was so anxious, we decided we would drive and yes, it was a nightmare. We felt safe because we thought, oh well, we’re going literally from our house, opening the car door, we’re opening the car door again in London and going straight to hospital.”

“We used to get a taxi when we arrived down there because we get in at half-past nine in the evening. We used to get a taxi from Kings Cross down to Western, but we don’t do that now. We walk.”