The covid-19 “catastrophe” in care homes could have been acted on earlier if basic data on people who receive social care had been collected and shared in the same way as it is in the health service, the director of a new research institute has said.

Bruce Guthrie, who is Professor of General Practice at Edinburgh university and co-author of research into links between hospital discharges and care home deaths, said issues only became apparent when larger providers started reporting outbreaks and deaths.

And the academic warned that the true extent of deaths among people in receipt of home care during the covid-19 pandemic is unclear because “no one knows how complete the reporting was.”

The university’s Advanced Care Research Centre has been set up to drive improvements in care for people in later life.

In a briefing for the Centre, Professor Guthrie says the social care data gap ‘reflects and reinforces the relative invisibility of adult social care… [which] is largely talked about as a problem of funding, rather than the quality or effectiveness of care.’

More than 42,000 deaths of care home residents in England and Wales with covid mentioned on their death certificates have been registered since March 2020, according to the ONS.

Another 3,377 Scottish care home deaths were linked to covid in this way, National Records of Scotland figures show.

Discharges from hospitals at a time when there was no testing in place have been blamed for ‘seeding’ covid-19 in homes.

But a report commissioned by the Scottish government suggested there was little evidence of a link.

Professor Guthrie, who was one of the co-authors, said the huge amount of work to establish who had been discharged into care homes was further evidence of a care data gap.

“Fundamentally the problem is there is no easy way to know who gets social care,” he told healthandcare.scot.

“We have this slightly odd situation where the local authority knows quite a lot about people receiving social care, but that’s not shared with anyone else, and therefore it’s just not visible. If you don’t know who they are, then you don’t notice when things happen to them.

“We failed to notice tens of thousands of people dying in care homes until after the event.”

He suggests a starting point would be recording care home admissions and discharges in the same way as hospitals do, with providers receiving IT support as GPs do. 

The Scottish government’s plans for a National Care Service promise a ‘nationally-consistent, integrated and accessible electronic social care and health record’ that could be accessed by all those providing support.

Professor Guthrie said: “I would argue that the data side has to be a core building block of a National Care Service.

“We don’t know enough about people who get social care, but I wouldn’t personally delay reform while waiting for that data to be collected and analysed, because you’re just kicking something several years down the road.”

But, pointing to a controversial GP data sharing plan that saw millions of people opt out of sharing their information south of the border, he added: “You’ve got to carry both the professionals and the people in receipt of care, and family and friends. You do have to develop a proper plan and take the sector with you, to avoid what’s happened in England”.

Read more: Details of National Care Service revealed; Citizens should be the curators of their health data; Briefing: Self-Directed Support six years on

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