The Government in England has started to ease shielding and will pause it on 1 August, while restrictions are also easing in the rest of the UK.
Parents and individuals living with muscle-wasting conditions have shared their experiences of shielding with us – and how they feel as 1 August approaches.
Lizzie Deeble’s six year-old son, Sebastian, has Duchenne muscular dystrophy. The family have been shielding since March.
“It really wasn’t a surprise that we were asked to shield. Neither was our family of four struggling in our own different ways to come to terms with total isolation. But what has come as a shock to me is how hard it is to come out of it.
“Shielding essentially means responding to that most primal parental need – to protect your child from all risk from the outside world. Parents often say they wish they could wrap their child up in cotton wool and never leave them. When your child has a complex, life-limiting condition, that instinct is even stronger, even harder to ignore.
“Covid-19 has made the world outside into a frightening place. And more than that, it has allowed us to feel that, by keeping us all at home, we can not only control but eliminate those risks. We can keep Sebastian safe. We can protect him.
“I didn’t feel relief when we were told that shielding will come to an end. I felt fear. It means entering the world again when I am uncomfortably and acutely aware that I cannot control what happens and I cannot keep my son safe from harm.
“Once your world has shrunk into a safe cocoon to protect your most vulnerable and most loved, expanding it and re-learning how to live with risk rather than hide from it will take more than the small Government-endorsed steps. It will take courage in a way that very few people will ever understand. So please be patient. Wait for us. We’ll join you. It’s just going to take us time.”
Freya Levy, who has FSHD, has been shielding at her home in Essex with her partner, Katie, since 15 March. The 24-year-old has competed for Great Britain in Wheelchair Basketball and Para Ice Hockey and for England in Wheelchair Rugby 7s.
“I didn’t get my letter telling me I should be shielding until April. It was pretty tough to read. I had been shielding anyway and I knew I probably should have been doing it, but seeing on paper that you’re ‘clinically vulnerable’ is quite daunting.
“I’ve been keeping busy during lockdown with DIY, helping my partner with work, and training. It’s been difficult not being able to play team sports, and I do miss that. When you have a muscle-wasting condition, you can’t afford to wait too long for these things.
“My employer has been incredible. I work for a sports charity, and part of the job is going into schools. When I told them I was shielding, they were really understanding. They have said I am valued, and they will let me return on my own terms.
“I’m not sure how I feel about shielding being eased. I haven’t left my house at all yet. I may go and visit a friend, but not public spaces just yet. Come August, it will still feel naughty to be out. That’s the best way I can think of describing it.”
Hayley Lloyd is a single mum whose 14-year-old son, Tommy, has a muscle-wasting condition. She and Tommy started shielding on 9 March when a child at school in the town they live tested positive for Covid-19.
“We have now been shielding for more than four months and have not rejoined society in any way. We still have our shopping done for us and I’m unsure quite how we will have the confidence to leave the house.
“The Government promised shielders a letter by the end of June giving us more details about how we can ease out of lockdown safely. That letter has not arrived.
“We feel forgotten and unimportant as the rest of the country go back to their new normal. We stay scared in our own homes.
“As Tommy’s mum I feel like the decision to let him ease out of lockdown has been left solely down to me. We haven’t been given any medical guidance at all. So should I let him go outside? Risk others not social distancing near him? Are the infections low enough? Is my anxiety making me irrational? I have so many questions and no answers.”
Ali Kay’s eight-year-old son, Bertie, has Ullrich congenital muscular dystrophy. The family have been shielding for more than three months.
“The Government has repeatedly comforted the general public by reiterating it is usually only the ‘clinically vulnerable’ who are in serious danger from Covid-19. This has stoked immense fear among families like ours.
“We really welcome that aspects of the new shielding guidance may bring relief to some in the neuromuscular community. We ourselves certainly won’t be rushing to meet up with five or six people from other households, though, when there still isn’t a vaccine, an effective track and trace, or an antibody test in place.
“Meanwhile, without protected park and shopping hours, pausing shielding will place enormous pressure on us to find quiet times to leave our home, which may not be possible. Having to play dodge like this will not only cause anxiety for many people, our son and others like him will genuinely still be at risk of infection.
“Wheelchair users like our son will find it extremely frustrating trying to maintain social distancing at a two-metre distance in public, in elevators, and so on. And with the distance reducing to one metre for the general public, having two separate distances doesn’t seem workable. Members of the general public are struggling to maintain this themselves and the wearing of face masks is entirely haphazard due to very mixed messages from the authorities.”
Kieron Sales and his wife, Louise, have been shielding at their home in Lancashire with their children, Mila-Rose, seven, and Alfie, six. Alfie has Duchenne muscular dystrophy and is classed as extremely vulnerable.
“I don’t think people realise how hard shielding really is, it’s a massive sacrifice and it’s even more difficult to see people flocking to the beach in their thousands during a global pandemic. It’s just pure selfishness, and they have the attitude, ‘It’s OK, it won’t affect me.’
“I’m not really sure what our way out of this situation is at the moment and what we’re expected to do once 1 August comes around. Are we just expected to go back into society as if nothing has happened? Do we take a baby-step approach? Will there be continued support from the Government? The general public will have had almost a month of being back to some kind of normal, yet come 1 August we will have to make anxious decisions that are usually just an average everyday task.
“Should the government introduce a ‘shielding hour’ that works in a similar way to how key workers were allowed to shop alone to avoid the crowds? I’m sure it would ease the anxiousness of being thrown back into society.
“I think we will just have to take the baby-step approach. If we are to go to the shops then either myself or my wife will go alone early in the morning or late in the evening. We can’t take the risk of letting Mila-Rose and Alfie back into society too soon. We’re also gradually introducing our close family and friends back into our ‘bubble’ by having socially distanced chats in our garden.”
Chloe Ball-Hopkins was diagnosed with nemaline myopathy when she was four and has had numerous operations for a bone condition called arthrogryposis. She has competed for Team GB in archery and has worked both for the BBC and ITV. Chloe – who is studying for a media production degree – has been shielding with her grandparents during Covid-19.
“The last month has been the hardest, really. Seeing people start to get back to some normality, seeing photos on social media of people definitely not following the guidelines, and pubs reopening. Yet until last weekend, I wasn’t able to even go to my mum’s garden, let alone anywhere outdoors. When it was announced a few weeks ago that people shielding could go out once a day my grandparents and I decided to go to a common nearby and it was so quiet there we felt safe. We have only done this a few times, though.
“Now, I will start seeing more people in more places because I need that social interaction. But this will only be with those shielding and those I trust. It will be in gardens, not public spaces. My friends have gardens you can access from outside. My mum is shielding with my dad and brother so I will see them in their garden more, and vice-versa. I don’t feel like any more than that is safe. I haven’t seen my boyfriend properly since the start of March and that is so hard.
“I do think we need to find a way to have an element of normality after being home for so long, but just because they say I don’t have to shield it doesn’t mean I will go back to normal. My main concern is social distancing. For the general population it’s one-metre-plus, for shielders it’s two. I really want some normality, for sure, but not at the risk of my own life or my friends and family. I won’t be doing my food shop or going to restaurants. But I will consider using the toilet at a friend’s house – although I will take antibacterial wipes, my own toilet roll, hand wash, hand sanitiser, and so on.”
Vicki Dennis has a rare form of muscular dystrophy and has been shielding at her home in Buckinghamshire with her partner, Keegan.
“Shielding for the last 20 weeks has been hard. I found it particularly difficult when the pubs and restaurants reopened. People were allowed to go and have a drink or go out for a meal, but I – living with a life-limiting condition – had to stay indoors. I can’t even see medical specialist about my condition. Nothing to me makes sense.
“When I listened to Boris Johnson last week and he said, ‘Enjoy the pubs and enjoy the summer’, there was no mention of the shielding community whatsoever. I actually cried. I’ve never felt so trapped in my life.
“It’s my partner, Keegan’s, 40th’s birthday on Saturday. In reality I should be sitting indoors with him because of Covid-19. But we haven’t seen anyone in such a long time and haven’t seen a member of his family since December. So I will be going to a friend’s garden where we are having a little celebration at two metres apart.”
- If you would like to share your experiences of shielding or anything else from lockdown, please email: pressoffice@musculardystrophyuk.org