“Online support is helpful to us. We don’t have to travel, we don’t have to waste energy, time, money, in organising support for us to leave our loved ones. Instead, we can just pop in and pop out of zoom. If the moment is good we can attend. We don’t have to book a sitter, or have written pages of instructions. We don’t have to go through the anxiety of leaving our loved one. Instead we can just attend”.
Carers on zoom
Back in 2019 a group of organisations in the diverse inner London Borough of Lambeth got together with Compassion in Dying, wanting to make advance care planning accessible to the people of Lambeth. We wanted to target support to people who often struggle with health inequalities:
- people who speak Portuguese as a first language
- people with learning disabilities
- people living with the early stages of dementia
- people with long-term health conditions and carers
It was an ambitious project, with a rock solid partnership of trust to build on, with committed individuals and three-year funding from the National Lottery Community Fund.
The project launched and the pandemic struck. The partners recommitted themselves to the project and yet at the same time had to provide food and basic necessities to residents who needed this help. Support moved online. Events that were meant to be held at a community fair with candyfloss and sticky fingers, were moved to zoom. People requiring one-to-one support were offered help via the phone, whatsapp or even a damp door step visit. Overall, the numbers we had been expecting dropped. We kept hoping that the pandemic would pass and we could get on with our original community-based plan.
Carers on zoom
However, we began to notice something. Carers. Unpaid carers who have been unbelievably stretched over the last year, often having to provide onerous personal care that a paid for care worker would normally have done, were telling us something. Or rather our community partners, the Lambeth Carers’ Hub began to notice. That a zoom meeting wasn’t so bad, in fact like some colleagues in the disability sector, carers were saying:
We listened again. The carers told us that they did not want to just take time out for themselves, to follow up and have a one-to-one support session, however important a subject they thought it was. They weren’t used to thinking about themselves.
Instead they wanted to have some fun, discuss the possibilities, meet other carers, learn from others. Therefore in the next few months we have adapted our model of delivery, following the observations of Lambeth Carers’ Hub. Instead of offering one-to-one support sessions, they are running a series of group sessions where carers discuss their advance care plans together, have a laugh, and a think together and get the opportunity to write their own very personal plan with the support of their peers.
We don’t know if this will work. It will still require the carers to have some time to think, a bit of time of their own. We just know it’s worth trying.