What 'shielding' should look like

I am an immunocompromised person, wheelchair user, have been housebound for almost a decade now. For me, the pandemic has weirdly been a huge accelerant on issues many people like me have been trying to implement for years. I wanted online learning for our disabled children, online/ video appointments with health professionals, to be able to do things at home with more support, to be able to form a community via video when meeting in person was too exhausting, and help to be more independent - all things I and others like myself were told was 'too difficult' or too expensive to implement.

When being housebound suddenly affected EVERYONE, society moved very quickly. Foods I could never have tried (no restaurant bothered deliver to our area) suddenly came straight to my door. I could just make a phone call and describe symptoms to a consultant and things were sorted without hours of excruciating travel. Zoom suddenly became popular, and I've been listening to online concerts and watching movies I would have needed six months to ever see because I couldn't sit in a cinema. People were suddenly right here WITH me, and for people like me, the world opened up.

However, all that solidarity changed as quickly as it began. As soon as things opened up again, it seemed society wanted to put it all behind them and pretend they didn't have to worry anymore. Deliveries stopped, GPs and specialists no longer wanted to be bothered using technology. Worse still, people like me now should be 'sheltered' while everyone else is allowed to 'get on with things'. But what does 'sheltered' really mean in this scenario?

I keep hearing 'sheltered' and 'support' being used, but no one can define what that means. For the immunocompromised, if you truly want to 'shield' us, there should be financial support for people who cannot work in busy environments - we aren't all retired, a lot of us work, and have sacrificed our jobs so we didn't become statistics. Universal Credit was never going to cover it (we warned people for years when it became implemented...and now society sees the reality)

Where we are moving, the community is elderly, there's no food bank in the village for those who cannot drive. They've done as much as they could with what they had, but I fear for them all in this next wave. What 'support' looks like for vulnerable people is widely varied and different - what works for me won't work for someone with a stoma, or another person who has mental health issues, or a frail person with dementia. The vulnerable aren't homogeneous; they're old, young, paralysed, invisibly ill, look 'fine' because you can't see the insulin pump or don't realise they're even on chemotherapy medication. People who have physical issues are struggling to do their physio remotely as there isn't enough PPE to go around. I should probably have a district nurse come in to check on me...but with a lack of testing and PPE, I don't know if I dare let anyone into my house. These are things my friends have been dealing with for months...some of them have gone silent. Several haven't survived.

Of course, in order for people like me to manage our conditions, and to not be forgotten yet again en masse because we aren't visible, I would strongly propose community hubs by council or district, which specifically copes with the needs and requirements for those of us who are shielding and vulnerable. Each community is different, and each area has its own challenges. Where we are moving, the Rest and Be Thankful has been regularly destroyed in landslides, which has impacted our community greatly from both a business standpoint, as well as getting in supplies for those who need them.

I would like support hubs in all councils to not only create PAID support chains for the most able bodied in concrete terms (food, clothing, medications), but also community members who are vulnerable themselves and may be able to brainstorm and share ideas with one another. The volunteer groups worked well at first, but were mostly comprised of able bodied people who don't understand the challenges the ill face, and had no idea how to source or secure the things I need, and most of all (and you can't be blamed for this unless you're dealing with it yourself) just flat out don't understand what my life is like or what it means to live with it. This is something I need other autoimmunity folk in chairs to speak to, in a safe space that isn't filled with the incredibly hurtful rhetoric of "People die, so be it."

We could create databases of quick links of how to order things that are needed, or to place requests for those who need help sourcing in what is required, from bandages to cordwood. There are also needs to be funding available to deliver laptops, phones, or other kinds of technology, and ways to teach people how to use them in hub classrooms if possible, or in person if not (and again, PPE and testing needs to be up to scratch). We could even just talk to people - speaking to older people helps a lot with loneliness, and the elderly are amazing founts of wisdom and 'life hacks' if you are willing to be present and listen.

We need to build in more community support which isn't just comprised of able bodied good/ less able bodied good luck. A community means it needs to be helping EVERYONE, and I feel we could be doing better as a society. There is no 'back to normal', and I refuse to be written off as useless. I refuse to die from indifference.

We are moving to a very rural community in Argyll and Bute - the house is adapted for wheelchair use, and for the first time in years I will be able to leave my house independently. I want to help contribute to my community - I'm sick, I'm not unconscious, and I can still do things - but the growing insistence that 'life is risk/it's just the flu/MY FREEDOM' makes that difficult for me to do. I don't feel safe going anywhere in the community because I don't know who is thinking about the community, and who is only thinking about themselves. So, my husband and I will be staying at home and away from the public until a vaccine and a decent take-up has occurred. A lot of my ill friends are doing the same - right now, staying alive feels like a radical act.

I have had firsthand experience with the shambolic way that 'support' was given in England during the spring - one food box full of nothing nutritious several months. We were able to take care of ourselves, as we have more privilege than most. But I spend several days scrambling to find ways to feed my friends. I have had firsthand experience with the shambolic way that 'support' was given in England during the spring - one food box full of nothing nutritious several months. We were able to take care of ourselves, as we have more privilege than most. But I spend several days scrambling to find ways to feed my friends. I hunted down cordwood, Hibiscrub, got someone to make visors with a 3D printer and sourced masks for a friend who needed a carer in. I donated money for meals to be delivered to friends who couldn't leave the house, and in return they have helped me learn how to treat pressure ulcers and keep moving in my chair...a LOT of things the able bodied have never had to think about, and therefore no one could tell me how. This meant the overworked community nurses didn't have to try and shoehorn me in, and so far it's worked.

My main reason why this issue is important is, due to a lot of the rhetoric I have seen around, I don't feel that anyone really cares about people like me anymore. I can't appeal to people's better natures...and I can't expect anyone to save me and mine. So, people like me are going to have to find a way to help ourselves. And with the advance of Long Covid in the lives of people who have never experienced chronic illness, there are going to be a lot more of us.

Volunteering is all well and good, but people need to eat, and the able bodied struggling to find employment now would surely be better paid delivering through community hub support, rather than scrambling to deliver Amazon parcels. When the able bodied have peace of mind, they don't default to 'every person for themselves'. I am determined that no one should be left behind, and we can all survive, but we ALL need to pool our resources together, stop seeing other people as expendable, or as a necessary cost to try and scrabble in a mad dash to 'old normal. I have learned from brutal experience the true success of 'survival of the fittest' isn't eugenics, but adaptation. I had to adapt my entire life...and I'm still alive. We can all adapt; if we work together.