Scotland is still waiting for high-quality information on how covid-19 is affecting people with learning disabilities nine months into the pandemic, as the crisis exposes a lack of routine data on one of the most vulnerable groups in society.

“Hugely concerning” figures showing the devastating toll of the virus in England were published earlier this month but data for Scotland is still being analysed.

They revealed people who have a learning disability were four times more likely to die of the virus than the general population.

Once this is adjusted for under-reporting it is thought the rate could be six times higher.

Charity Enable Scotland said action should be taken now to protect this “clearly vulnerable” group rather than waiting for Scotland research to be released.

The organisation says that a lack of data that pre-dates the pandemic has left this vulnerable group “largely invisible”.

Jackie Bailie MSP, convener of the Scottish Parliament’s cross-party group on learning disability, said the lack of data “isn’t good enough” and represented a “lack of priority” placed on Scots with learning disabilities.

A report from Public Health England found the effects of the virus were starkest among BAME people with learning disabilities.

It found 451 per 100,000 people registered as having a learning disability in England died with covid-19 between the 21^st March and 5^th June.

This is a death rate 4.1 times higher than the general population after adjusting for other factors such as age and sex.

But as not all deaths were registered on databases, researchers estimated the real rate may have been as high as 692 per 100,000 – 6.3 times higher.

The findings were described as “deeply troubling” by Public Health England’s Professor John Newton, Director of Health Improvement.

UK government Care Minister Helen Whately said she had asked government advisors SAGE to review the findings and “give advice on what more we can do to keep people safe”.

Speaking about the England statistics, Dan Scorer, of charity Mencap, warned that “decades of under-investment in social care has left most people with a learning disability with no support to understand ever-changing guidance on staying safe and accessing testing.

“This – combined with the closure of the NHS for all but the most urgent care – has clearly had a devastating impact on people with a learning disability, and exacerbated already shocking levels of premature death and health inequalities.”

As yet, however, no such report has been published for Scotland.

People working in the sector say they have been told since April that the data is in development.

In June the Scottish Learning Disabilities Observatory (SLDO) told healthandcare.scot it was hopeful its project, which would link health and deaths records to 2011 census information to determine virus infection and death rates among people with learning disabilities in Scotland, “would be approved soon”.

Asked for an update on the work, the Scottish government said: “The Scottish government has commissioned the Scottish Learning Disability Observatory to produce research on the impact of covid-19 on the learning disabilities population in Scotland.

“This work was necessary as a learning disability is not routinely recorded on death certificates. The study will investigate the number of deaths linked to covid-19 for people with learning disabilities.

“All approvals and documentation are in place and the data is now being analysed to enable us to investigate the impact of covid-19 on people with learning disabilities in Scotland.

The Scottish government said the work involved a “complex linkage” between different records and data-sharing agreements to go ahead.

But the situation has exposed a lack of routine healthcare data on the lives of one of the most vulnerable groups in Scotland.

It means, according to Enable Scotland, that people with learning disabilities Scots are “largely invisible”.

Jackie Bailie, Scottish Labour’s deputy leader, described the delays as “simply unacceptable”.

“We urgently need the Scottish government to release this data to better understand how those living with learning disabilities have been affected by the pandemic,” the Dumbarton MSP said.

“By delaying the publication of this data, the government is demonstrating a lack of priority for those living with learning disabilities. This isn’t good enough.

“We need this data to better understand how people with learning difficulties have been affected, and we need it now.”

In England monthly figures are collated under the Learning Disabilities Mortality Review programme, known as LeDeR, in which each death of someone with a learning disability in hospital is reviewed to improve the quality of care in future.

But no such regular reporting exists in Scotland.

Recent research from the Scottish Learning Disability Observatory found premature mortality is 12 times higher for children who have a learning disability, and adults are twice as likely to die early than the general population.

This rises to five times more likely for those adults who have Downs Syndrome.

Jan Savage, from Enable Scotland, said: “The Public Health England data which shows that people who have a learning disability are six times more likely to die as a result of Covid-19 than the general population is hugely concerning.  

“We still await data for Scotland, but we surely don’t need to wait to listen to what the English data is telling us.

“We should not wait to improve testing strategy and priority access to healthcare services for this clearly vulnerable population in Scotland, particularly with the onset of winter illnesses.

“In the meantime, the experience so far during covid-19 has taught us that people who have a learning disability are largely invisible in standard healthcare data.

“This must be an urgent priority for the Scottish government and its agencies to resolve as we move forward in order to drive and design better access to healthcare, and better health outcomes, for Scots who have a learning disability.”

The Scottish government said it was already taking action to protect people with learning disabilities, including specific support for people with Down's Syndrome after it was announced they were being added to the shielding list. 

A spokesperson added: "The Scottish government have been working with the Scottish Commission for Learning Disabilities and People First Scotland to create easy read versions of all official Government Coronavirus related advice and information relevant to people with learning disabilities.

"The Scottish government and SCLD have worked with Glasgow University to develop, promote and distribute a series of guided self-help booklets for those supporting vulnerable people on staying physically and mentally healthy during the pandemic.”

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