Over the summer of 2021, many Covid-19 restrictions were lifted across the UK and many people returned to pre-covid activities. For some siblings, this wasn’t possible. Some continue to shield or take daily life extremely cautiously, in order to protect their clinically vulnerable brother or sister. Our shielding survey in August 2021 revealed the extent of the impact this has on a sibling’s life. We extend huge thanks and appreciation to all siblings who took part in the survey and generously shared their stories.
“Lack of contact when my sister has been critically ill has been hugely stressful”
I’m being cautious for family and personal reasons generally, not just because of my sister. Several members of our family (parents, my partner) are extremely vulnerable or have other health issues. Also, I’d prefer not to take the risks to my own health anyway, so there are personal reasons for my behaviour as well as family reasons.
Unfortunately, my sister got Covid anyway through her care home and she has been critically ill. I wasn’t able to visit her during lockdown and I’m being very careful to protect both of us when I visit her now in her care home (short visits, lots of PPE, open windows, etc.) and a lot of the contact is by phone or video calls. Her main risks currently are probably via her care home rather than from me (hopefully she now has some immunity).
I don’t think protecting my sister generally has much extra effect on me because I would be taking this action anyway for my own health protection and for other family members. It has, nevertheless, meant that I am not able to see her as much physically as I previously did, but we are more in contact by remote means. Travel to see my sister is very difficult because we live several hundred miles away. In the past, I could have easily travelled by train on my own, but now (due to the Covid risks) I am having to ask my partner to drive me to see her (as I don’t drive myself) and that puts extra pressures on him. The logistics of handling this distance caring are a worry, but hopefully we will get through this okay.
For our family, lack of hospital access has been a real issue (my sister was in hospital for 5 months following her Covid infection). Not so much the limited physical visits (we realise we can’t always see my sister in a Covid ward and ICU), but the extreme lack of supported virtual contact (only one supported video call a week, at most, to family (mainly my father) via the hospital learning disability nurse). My sister can’t make calls on her own and many of my requests to speak to her were ignored or overlooked by the hospital learning disability nurse. Now my sister is back in her care home it is better since I can phone when I want and the care home encourages this. This lack of contact when my sister has been critically ill has been hugely stressful (making a difficult situation much worse than it needed to be), but fortunately she is out of hospital now.”
“I am careful where I go prior to his visits as I am still worried about the virus and I want to protect him (despite us being double vaccinated)”
“In 2020, my brother came home for lockdown – I shielded with him. I worked from home. I did not go out because I was worried for my brother’s health and safety. No problems here, I was just so happy to happy to have my brother home.
2021 – My brother returned to his residential (January). This was tough for me because of the restrictions. On an emotional/mental health level this was very bad for me but for other things (work, social life) this did not affect me (despite losing work). My brother is now permitted to visit the family home (this started in July) but on a fortnightly basis. I am careful where I go prior to his visits as I am still worried about the virus and I want to protect him (despite us being double vaccinated).
So at the moment I only go to: his residential (for 1 hour visit a week), gym, and supermarket. This may all change in the Autumn, as I am expected to teach face-to-face. I am worried especially about commuting on a daily basis. I am more concerned about catching the virus and passing it on to my brother. I can’t risk losing the work though (I lost a lot of work in 2020).”
“Early on in the restrictions my biggest worry was that my brother would bring the infection to me”
“It’s difficult to gauge exactly how much my brother understands about COVID. He does know it’s an infection but he doesn’t seem to see how he or his actions fit into the bigger picture. For example, a year down the line he needs to be reminded to wear a mask and even then doesn’t wear it properly.
Our lives haven’t changed that much in restrictions, however I don’t go anywhere except Tesco and the petrol station and to walk the dog in quiet areas. Maybe I’m a bit of a control freak and it makes me anxious that I can’t control the random people I would have had contact with pre-COVID so I choose not to put myself in those situations. Early on in the restrictions my biggest worry was that my brother would bring the infection to me. I have health issues and he has asthma.
My brother has Asperger syndrome, he gets anxious and those anxieties have increased. This leads to his eczema getting worse, which means I have more physical caring duties as he tends to be non-compliant with medication at the best of times. I don’t know how everyone is going to relax in the future”
“As a new graduate I feel I’m missing a lot of opportunities that you could normally go for”
“I’ve been unable to work for a year, and now that I’m starting work again I’ve been so worried about the risks. It’s taken a toll on my mental health, but financially I have no choice but to work. Having any sort of social life is hard when everyone else is going out again and you have to say no to things or ask for plans to be changed so it’s safer (i.e. outdoors and distanced). As a new graduate I feel I’m missing a lot of opportunities that you could normally go for. It’s also taking a toll on our family life, not being able to have a break from each other.”
“I’m single and I’m scared that I’m missing my window to meet someone to share my life with and have children”
“I moved back in with my brother and our parents from March until December last year so that I could shield with them. We had no support in the house from March until August. My brother didn’t leave the house for 101 days.
Until this July I hadn’t stepped foot inside anywhere besides our family homes other than to have my covid jabs. We have had everything delivered and have cleaned it at the doorstep before bringing into the house. I stopped having chiropractic treatment until after we had all had our 2nd jabs so have struggled with additional pain and tension in my back. I feel so isolated and lonely.
The scrapping of restrictions feels so scary, numbers are so high I think we’ll be pushed back into full shielding. My brother has 2:1 high level support needs 24/7. We have 1 PA that has shielded in our bubble, she works 27 hours a week so the other 309 hours of cover is shared between myself and our parents.
My main coping strategy to deal with my depression and anxiety was always to travel and visit friends both in the UK and around the world. I haven’t been able to visit friends since 17th March 2020. I’ve seen my best friend from a distance because she lives 30 minutes away but so many friends I’ve only seen virtually. I’m single and I’m scared that I’m missing my window to meet someone to share my life with and have children.”
“Millions who continue to shield cannot be forgotten”
“The Government needs to do more to acknowledge and help people and their families who are continuing to shield. There needs to be a clear message. They have said we should go out (to supermarkets etc) when it is quiet now that masks are not mandatory. This is not acceptable. Masks should be mandatory in places where people need to go such as supermarkets, public transport etc so people can be/feel as safe as possible. Pubs, clubs etc are a lifestyle choice, the use of public transport to get to essential places isn’t. Millions who continue to shield cannot be forgotten…also those with long covid including many younger people with no vaccines.
There should also be a clear policy on school ventilation (including Hepa filters, co2 monitors) especially in primary schools where testing is not routine. There are many people shielding who have primary school children in the household. Inadequate ventilation policies are putting both the children and their vulnerable family members at risk. There are actions which can be taken but the UK Government seems to have other priorities.”
“Just as everyone is enjoying more freedom, I now feel like I have to take a step back”
“I think the general attitude now is that everyone needs to get on, the vaccine protects us and you can’t live life totally risk averse. I wonder if people would be as confident in that opinion if they were having to make that risk assessment about someone else’s life. If they were extremely vulnerable and unvaccinated how would they feel?
I’m used to not having much social life as I am the main carer but throughout the pandemic I have at least made sure I saw my friend for a couple of hours every week. She lives alone, works from home and it felt safe and helped both of us stay ok mentally. Now she is mixing much more, getting some life back and sometimes I now have to think about how safe it is to meet her if she’s been busy. Just as everyone is enjoying more freedom, I now feel like I have to take a step back, just incase I bring it home.”