The pandemic has been even harder for people with learning disabilities than for others. A disproportionate number have died and one of Sanctuary Living’s residents was wrongly put under a ‘do not attempt cardiopulmonary resuscitation’ order that the HA had to get overturned. Sara Keetley considers what the long-term impacts of COVID-19 will be for this group
In May, the Care Quality Commission (CQC) announced it was mapping the impact of coronavirus on people with learning disabilities and autism, indicating serious attention is now being paid to the challenges the pandemic poses to them.
NHS data has shown that almost half (45%) the deaths of people with a learning disability in April were related to COVID-19; this is compared to the headline-grabbing figure of 31% of deaths in care homes over the same period being related to COVID-19.
This raises serious questions about the impact of the virus on people with learning disabilities.
Sanctuary Supported Living supports 6,000 residents and provides more than 300 services, including more than 90 for disabled people. We had to respond quickly to the crisis, using our already well-established support practices alongside innovative new approaches, to protect residents.
Public Health England’s easy-read, pictorial guides have been invaluable in helping residents get to grips with some of the basic problems thrown up by coronavirus.
The importance of washing and cleaning has been a central message in the government’s approach to tackling the spread of the virus. At Epworth House, in Burton-on-Trent, residents have set up a rota for cleaning door handles, furniture and banisters, following discussions and education from staff about the risks of spreading germs.
Handprints on pieces of paper, along with the word ‘WASH’, were put in residents’ homes at Nickleby Road, in Chelmsford, alongside government hand-washing posters to encourage regular, 20-second cleaning.
“We experienced first-hand the issues a person with a learning disability can face, after a resident was admitted to hospital with COVID-19 symptoms”
In addition to modifying our usual support to ensure residents have been prepared throughout lockdown, our teams have also increased the provision of activities to entertain them and introduced innovative communication methods.
At Old Milton Road in New Milton, residents’ clear understanding of social distancing is thanks to the penguins in the popular film Madagascar. Residents have been told to be like them: “Just smile and wave.” It’s a simple message that resonates with residents, whose communication needs can be quite complex.
Technology has become more important than ever. ‘Talking Tiles’ has helped in communicating essential safety or hygiene information to residents, particularly in services where residents are unable to read.
Food can pose challenges for people with learning disabilities beyond the difficulties arising from social isolation. One autistic resident has disordered eating needs and a history of stopping eating when he can’t access his preferred foods. Recognising the risks, staff at his home carefully planned food purchasing and management to ensure there was a regular supply.
Although we are focused on providing the best possible service for residents and helping them adapt, it is vital they are recognised as a vulnerable group requiring additional support from the government, Public Health England and clinicians.
“We must not let up our focus on making these vital and significant, yet proportional adjustments to our new environment”
At one of our schemes, we experienced first-hand the issues a person with a learning disability can face, after a resident was admitted to hospital with COVID-19 symptoms.
A staff member was unable to attend and provide support, as with normal hospital admissions, so communication with healthcare professionals was limited; they also did not have the resident’s full health details.
We were subsequently advised the resident had been placed on a ‘do not attempt cardiopulmonary resuscitation’ order and would not be offered a ventilator if their condition deteriorated further.
We challenged this decision and it was successfully overturned.
The resident made a full recovery, but their example highlighted the need for us, as support providers, to closely monitor the progress of residents with learning disabilities in hospital throughout the pandemic. We developed guidance packs for all managers and COVID-19 passports linked to newly developed NHS guidance for hospitals assessing a person who has a learning disability or long-term physical disability.
We must not let up our focus on making these vital, significant, yet proportional adjustments to our new environment. CQC figures recently revealed a 175% rise in the number of unexpected deaths of people with learning disabilities and autistic people from 10 April to 8 May, when compared to the same period last year.
For years, people with learning disabilities have lived in an atmosphere of social isolation – we are just 15 years on from the Mental Capacity Act 2005, which granted capable people with learning disabilities the right to make their own decisions. We live in more enlightened times, yet the fresh crisis of coronavirus means our learning disability communities once again face the issue of being cut off from social contact. We cannot fail them.
Sara Keetley, operations director, Sanctuary Supported Living