Over 60% of people with learning disabilities who routinely see healthcare professionals had seen them less or not at all since before the first lockdown, according to a new report.

It also found that nearly half of people with learning disabilities who usually have an annual health check had not had one since March 2020. This is despite 30% of family carers/paid support staff saying the physical health of the person they support had changed for the worse in that time.

The study, which was led by researchers from the University of Warwick and Manchester Metropolitan University, set out to speak directly to people with learning disabilities to hear about their personal experiences during lockdown.

The report is the first of its kind and is part of a UK-wide research project seeking to amplify the voices of people with learning disabilities.

The researchers spoke to almost 1,000 people across two cohorts. Cohort 1 was made up of people with learning disabilities themselves, while Cohort 2 comprised of the family and carers for people with severe learning disabilities who could not respond without assistance.

The study produced both quantitative and qualitative data about how the pandemic has affected one of the most vulnerable groups in our society.

How were those with a learning disability affected by Covid-19?

The results highlight how people with severe learning disabilities were disproportionately affected by Covid-19. While 3% of people with learning disabilities in Cohort 1 had received a positive Covid-19 test since March 2020, this percentage rose to 7% in Cohort 2. For comparison, the total cumulative prevalence of people in the UK who had tested positive for Covid-19 by 28th February 2021 was 6%.

Of those who had (or thought they had) Covid-19, 16% of people with learning disabilities in Cohort 1 and 14% in Cohort 2 were hospitalised because of their Covid-19 symptoms.

Furthermore, 16% of people with learning disabilities in Cohort 1 and 8% in Cohort 2 had someone close to them die due to Covid-19.

How has health and social care support been impacted due to the pandemic?

Shockingly, across Cohorts 1 and 2, 60% of people with learning disabilities (who had routinely seen healthcare professionals before the first lockdown) had seen them less or not at all since.

23% of people in Cohort 1 and 41% of people in Cohort 2 had a medical test or hospital appointment cancelled since the first lockdown. Moreover, 46% (Cohort 1) and 48% (Cohort 2) of people with learning disabilities who usually have an annual health check, had not had one since the March 2020.

The study’s findings also revealed:

  • 99% of participants in Cohort 1 reported community activities had stopped completely or reduced by the time of the interviews, and 89% reported their day service had stopped completely or reduced.
  • Carers of people with learning disabilities in Cohort 2 regularly using these services before the first lockdown reported that 95% of people with learning disabilities had experienced short breaks/respite stopping or reducing, whilst 98% reported day services stopping or reducing.
  • In Cohort 2, 30% of family carers/paid support staff said the physical health of the person they support had changed for the worse since the first national lockdown in March 2020.
  • 65% of people with learning disabilities in Cohort 1 said they had felt angry or frustrated, sad or down, and worried or anxious at least some of the time in the four weeks before their interview.
  • Only 1% of people with learning disabilities in both cohorts were finding it difficult to access food or medicines.
  • More than 80% of the participants indicated that they, or the person they care for, would take the Covid-19 vaccine if it were offered to them.

What happens next?

As Wave 2 interviews are due to begin shortly, the researchers are calling for people to join the study who they feel were under-represented in Wave 1. They are looking for: 

  • People with learning disabilities who are from an ethnic minority background
  • Those supporting a person with learning disabilities who is from an ethnic minority background and who would not be able to take part in an interview with a researcher themselves
  • Those supporting a person with learning disabilities who does not live in their family home and who would not be able to take part in an interview with a researcher themselves.

If you fit any of the above criteria, please contact the research team.