One of our registered carers has been kind enough to write about their experiences of caring during the pandemic, sharing their worries and challenges as well as the moments of light relief and inspiration.

“I am writing this at the height of the COVID-19 situation, so do not yet know how it will turn out. This is a personal account and things won’t be the same for all carers: for some, I extend my deepest sympathy.

I’ve been a ‘sandwich’ carer for my eldest autistic adult child all her life. Both of my children had medical issues when young, plus I support my elderly mother (who thinks she is still 21) down on the coast.

For me lockdown began when I damaged my leg again (I have hypermobility Ehlers-Danlos syndromes) and was in a leg splint.  I seem to have collected splints due to my disability but as I knew what it was, I didn’t risk going into hospital. Generally, I rely on online shopping, but suddenly I couldn’t get a delivery as I hadn’t realised my name should have been on their disability register.   My eldest child has severe allergies (anaphylaxis), so needs support to shop. But who knew this would happen?

I’m used to social isolation due to caring and disability needs, but receiving support as a carer was particularly difficult at the beginning of lockdown. We couldn’t get on the shielding list, so had no access to food deliveries and we were not actually social isolating from COVID-19 symptoms so couldn’t access community help. The local community food baskets were not functional for us due to allergies. At the same time our usual friends were not able to help either. I know that if I am finding issues then generally others are too, as some carers couldn’t go shopping with their dependent(s) due to limitation on numbers or were generally anxious. It was great to know Carers Support West Sussex (CSWS) joined the national campaign to give carers the right to access protected shopping times by writing to 48 supermarkets with the ask. Since then CSWS have received positive responses accepting carers and publicised the news via social media.

On a positive note, I found myself having more time to get inspired by cooking. My adult child and I were able to follow the easy recipes for making soups and savoury muffins as listed on the CSWS resource page. As a family, we worked our way through the CSWS boredom busters, which were great, and I managed to see shows from the Opera House, go on virtual tours around beautiful gardens and even squeeze in some yoga. These resources made the issue of not being able to go out more inclusive for us who have to manage it a lot of the time.

If one good thing comes from post COVID-19, it will hopefully be that social care will not be seen as the poor relation to healthcare and that not all work, meetings and events or even lessons need to happen in location to the disadvantage to others.”