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Supporting people with learning disabilities to stay connected

25 June 2020

Following the shocking statistics revealing the extent to which people with learning disabilities and autism are affected by Covid-19, Sanctuary Supported Living’s Operations Director Sara Keetley has written exclusively for Inside Housing about how we must strive to keep those communities connected.

With the news announced in May that the Care Quality Commission (CQC) is now mapping the impact of coronavirus on people with learning disabilities and autism, there is now serious focus being paid to the challenges this pandemic poses to the learning disability community.

NHS data has revealed that almost half (45.4%) the deaths of people with a learning disability in April, as notified to the Learning Disabilities Mortality Review (LeDeR), were Covid-19 related. Further analysis from Mencap revealed this compared to 31.1% of deaths in care homes over the same period being Covid-19 related, raising real questions about the impact of the virus in the learning disability community.

With over 300 services across our Sanctuary Supported Living operation, including more than 90 disability services, supporting 6,000 vulnerable residents, we had to respond quickly to the crisis, using our already well-established support practices alongside innovative new approaches to protect residents.

Sanctuary Supported Living Operations' Director, Sara Keetley.

Public Health England’s easy read guides in pictorial format have been invaluable in helping residents get to grips with some of the basic problems thrown up by coronavirus.

Washing and cleaning has been a central message in the Government’s approach to tackle the spread of the virus. At Epworth House in Burton-on-Trent, residents have established a rota for cleaning door handles, furniture and stair bannisters, following discussions and education with staff about the risks spreading germs.

While at Nickleby Road in Chelmsford, hand prints on pieces of paper, along with the word ‘WASH’, were put in residents’ homes alongside government handwashing posters to encourage regular 20 second cleaning.

Technology has become more important than ever and using ‘Talking Tiles’ has helped with communicating essential safety or hygiene information to residents. This has been particularly useful in services where residents are unable to read.

Food can pose challenges for people with learning disabilities beyond the difficulties arising from social isolation. At Corner House in Mansfield, one resident with autism has disordered eating needs and a history of stopping eating when he can’t access his preferred foods. Recognising the risks, staff carefully planned food purchasing and management to ensure regular supply.

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 residents. Eastgate in Stoke-on-Trent recreated a pub night with a twist, hosting in the service’s communal kitchens and naming it the Kitch-Inn Bar.

Another example of innovative communication has been used at Old Milton Road in New Milton, where 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’ – a simple message that resonates with residents whose communications needs can be quite complex.

While we are focussed 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.

At one of our schemes, we experienced first hand the issues a person with a learning disability can face after being admitted to hospital with Covid-19 symptoms.

With a staff member unable to attend with the resident and provide support as per normal hospital admissions, communications with healthcare professionals were limited, and due to the resident’s poor health we were advised they were placed on a do not attempt cardiopulmonary resuscitation (DNACPR) order and would not be offered a ventilator if their condition deteriorated further.

Recognising the concern, and owing to the fact the hospital did not have full health details of the resident, the decision was challenged and successfully overturned.

The resident made a full recovery but the example highlighted the need for us, as support providers, to closely monitor progress of learning disability residents in hospital through 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 and 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 autism 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 granting 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 face the issue of being cut off from social contact once again. We cannot fail them.

Sara Keetley
Operations Director
Sanctuary Supported Living


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