The mother of a man with a learning disability says it is proving impossible to get GPs to intervene to get her son into a priority group for vaccination.

Her comments come as an independent expert body has warned people with learning disabilities in Scotland are being “overlooked” in the covid-19 vaccination push.

Meanwhile research published today has revealed the death rate among this group was three times higher than the general population in the first wave of the pandemic.

Edel Harris, whose 33-year-old son Ross has Fragile X syndrome, said there was “huge anxiety” among families like hers.

Researchers in England have found that death rates among 18-to-34-year-olds with learning disabilities was 30 times higher than the same age group without disabilities.

When she phoned the local GP practice Ms Harris said she was told “it’s nothing to do with the GP surgery, it’s all being managed centrally in Scotland, just go away and wait for a letter.”

“I did keep saying how is anyone going to know to send my son a letter, because there’s no learning disability register in Scotland, and if the JCVI definition is people with a severe or profound learning disability, who is actually deciding who those people are, to send them a letter?

“If it’s not the GP, then it’s just obviously not happening."

Ms Harris, who is CEO of the learning disabilities charity Mencap, which operates in England, Wales and Northern Ireland, was speaking in a personal capacity as she is spending lockdown with her son in Scotland.

Ms Harris told healthandcare.scot: “It’s very simple if you’re over 80 or in a care home… and therefore a letter will find you.

“But if you’ve got a learning disability in Scotland how on earth are you ever going to receive a letter? And therefore you’re going to be missed… I don’t think [Ross’s] name would appear on a register anywhere, and that’s what all the families that I’m speaking to are saying.”

The Scottish Commission for People With Learning Disabilities (SCLD) says everyone with a learning or intellectual disability should be included in Priority Group 6 of the Phase 1 roll out.

In a statement SCLD is voicing “significant concerns” that gaps in GP records mean that people have been missing out on vaccinations.

Further problems have followed with “multiple accounts” of people with learning disabilities and their carers not being able to contact their GPs to discuss any problems.

The Scottish government told healthandcare.scot today it was not planning to amend vaccination plans.

The government said others with severe learning disabilities will be offered the jab during ‘group 6’, which includes all those under 65 who have health conditions placing them at higher risk.

But SCLD said it was aware of a series of issues affecting rollout.

It warned that data in GP records that is used to identify individuals in these groups is ‘not as accurate and up to date as they should be’.

‘Furthermore, as we understand it, GP records do not straightforwardly reflect the JCVI description of “severe and profound learning disability”,’ it said.

‘This means that people with learning/intellectual disabilities may be overlooked for a vaccination they have been prioritised for because their health conditions have not been accurately recorded.’

Speaking at the Scottish government’s daily briefing today, National Clinical Director Jason Leitch said anyone who thought they had been missed should contact their GP.

But SCLD goes on to warn that GPs are so pressured, it is proving difficult for families and carers to get in touch to rectify any issues, with a ‘possible lack of understanding of the important role GP records have in the wider vaccination roll-out’.

It is calling for everyone with a learning disability to be included in priority ‘group 6’, at a minimum, to ensure people are not missed out and to minimise the workload on GPs having to confirm the severity of a person’s learning disability.

Asked for a response to the concerns raised by SCLD regarding the role of GPs and vaccine prioritation, a Scottish Government spokesperson said: “As we’ve previously made clear, the vaccination programme continues to gather pace and, following the JCVI guidance, people with Down’s Syndrome will be invited for vaccination during group 4, and people with severe and profound learning/intellectual disabilities and carers, will be offered vaccination during group 6.”

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