A major survey of people with learning disabilities is leading to calls for much more robust data gathering by the NHS as part of efforts to tackle “long entrenched” health inequalities.

Researchers found Scots with a learning disability were generally happy with their lives – but those who had an additional health condition reported lower levels of life satisfaction.

They say this is a “particular concern” because people with learning disabilities already face significant health inequalities, with studies suggesting they die 20 years earlier than the general population.

The Scottish Commission on Learning Disabilities (SCLD), which developed the survey, is calling for a series of changes to NHS services, including free annual health checks for over-14s with a learning disability, as well as mandatory learning disability training for all GPs and health service workers.

Another recommendation is for digital health passports that could be used to communicate vital information and support needs with healthcare staff, and for staff across health and social care to support and encourage people with learning disabilities to maintain different types of relationships.

When asked how happy they were with their life, people with learning disabilities gave an average score of 8.13 out of ten, slightly higher than the 7.69 figure for the general population.

But a higher proportion of those with at least one additional health condition or disability reported lower than average life satisfaction.

Feelings of loneliness and not being able to see friends were also associated with lower levels of satisfaction.

The survey, which received more than 1,200 responses, was conducted before covid-19 and SCLD says the situation is likely to have worsened.

SCLD says there is “no panacea” to tackle the long-term health inequalities faced by people with learning disabilities but urgent action across a range of areas is needed.

As well as better data collection, it is also calling for the United Nations Convention on the Rights of People with Disabilities to be incorporated into domestic law in Scotland, and for social care assessments to take a wider view of what people need for wellbeing.

When it comes to relationships, it says there should be a ‘move away from a culture within services that tends towards risk aversion rather than risk enablement.’

SCLD chief executive Charlie Macmillan said the report showed a “mixed picture”:

“Many people with learning disabilities feel happy with their lives, while a significant minority reported very low levels of life satisfaction.

“When we consider that additional health conditions or disabilities were related to lower levels of life satisfaction, this is of particular concern as we know that people with learning disabilities continue to face significant health inequalities, and die on average 20 years earlier than the general population.

“This is why we have called for action to address these inequalities, particularly in the provision of health and social care. As part of the recovery from the Covid-19 pandemic, we must do much more to remove the barriers for people with learning disabilities to realise their human rights and become fully involved in their communities.”

Read more: Scots with learning disabilities "invisible" in virus; Covid learning disability deaths three times higher; Change to learning disability vaccine plans

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