Unpaid carers supporting people with learning disabilities can save taxpayers up to £114,000 a year but continue to be ‘overlooked’ and ‘undervalued’, an independent think tank has said.

Researchers from the Fraser of Allander Institute (FAI) found carers typically spent between 8 and 16 hours a day on care.

Lead author Emma Congreve, who heads the organisation's work on poverty and inequality, told healthandcare.scot: “It’s almost as if everyone knows that support won’t be returning back to normal but no one is properly having that conversation about what that means for people who draw on that – it all feels a bit under the radar.”

Providing personal care was only one part of the story – respondents reported being constantly ‘on call’, assisting at leisure activities, and the need to provide 24/7 supervision at home as reasons they had no access to genuine downtime.

Just over half of the sample’s unpaid carers had household income below or around the poverty line – but if they were being paid living wage for their work, each would expect to earn in excess of £35,000 a year.

While not representative of all unpaid carers who look after adults with learning difficulties, the authors say the report “provides an insight into the lived experience of unpaid carers and their value.

Ms Congreve said: “It is impossible to do a representative sample of unpaid carers as we don’t even know how many there are, especially those caring for people with learning disabilities.

“People we’ve spoken to from some of the bigger organisations felt our findings were indicative of what they’ve heard from people they’ve worked with”.

The report shows the surveyed carers also scored far lower than the national average on wellbeing measures, particularly for feelings of loneliness and burnout.

None of the unpaid carers of adults with learning disabilities had seen their support return to pre-pandemic levels, even as Scotland moved ‘beyond level 0’.

Many respondents said the people they care for had lost important progress in their goals of independence and their mental and physical health had been harmed.

The findings come after major research involving the University of Glasgow suggested one in three people with severe learning disabilities could have seen their health decline during the pandemic.

Many formal support facilities, such as day centres, have still not re-opened and those that have face increased pressure and risk of permanent closure, says the report.

Earlier this year the Social Care Minister wrote to local authorities to “prevent any further delays in re-opening”.

However, all but one of the unpaid carers in the Fraser of Allander research wanted more respite and services for the person they care for – with many “battling” the system designed to support them.

One participant said: “It was difficult before covid, but now everything has changed. There’s so much uncertainty about the future and you never get a clear answer.”

Read more: Learning disability support cuts leave families adrift; New rights bill for young disabled Scots; Fears over ‘smokescreen’ day service cuts

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