Family carers of adults with profound and multiple learning disabilities and the COVID-19 pandemic: Results from a UK-wide survey

Aim: Experiences of UK carers of adults with PMLD during the Covid-19 pandemic were explored. Method: Carers of adults with PMLD were invited to take part in three surveys over 12-months. Family carers had input in to the survey design and the interpretation of the results. Findings: Most people (60%) with PMLD lived with family. Over a fifth of people were shielding in the final wave of data collection. Over half (56%) of people with PMLD were getting less support now than before the pandemic with around half of these having been informed about these changes. Most people with PMLD (63%) had NOT been doing service-supported community activities in the last four weeks before the survey. Nearly half of people with PMLD were reported to be paying for services that they were not receiving. Carers reported that their health and wellbeing had been affected by their health and wellbeing. Conclusion/Application: Life during the pandemic has been particularly difficult for people with PMLD and their carers. When asked what would be needed to make a future lockdown easier, the most common responses were support to keep active (64%), support to keep busy (53%) and knowing support workers were vaccinated (53%).