Some people with profound and multiple learning disabilities will die earlier or suffer lifelong problems because care they needed was interrupted during the pandemic, an inquiry has heard.
The Scottish Covid-19 Inquiry was told on Wednesday that for some people, the postural care they required was so compromised due to Covid restrictions it will “hasten their death”.
The inquiry heard evidence from representatives of the charity Promoting A More Inclusive Society (PAMIS), which works to support people with profound and multiple learning disabilities (PMLD) and their families.
Pat Graham, chairwoman of PAMIS, said the lack of support was “absolutely devastating” for families following the first lockdown which began on March 23, 2020.
Ms Graham, whose 35-year-old daughter has a profound learning disability, said: “In normal times, non-pandemic times, in a PMLD family you build a framework and it is a really fragile framework.
“That framework depends on input from social work, the NHS, allied health professionals, schools, day services, respite and short breaks, housing support, and the third sector.
“On March 23, that framework just collapsed around our ears. For those with a family member who was still at home, there was no-one to ask for support and no-one to turn to.
“For those who were in a residential setting, it would be months before we would get to see our family members again in any sort of meaningful way, so it was a terrible, terrible time.
“Life for a PMLD family is frightening at the best of times and you do what you can to make it as good as you can possibly do. For those families with a PMLD son or daughter at home whatever age that was, it was absolutely terrifying because you depend on all those services.”
People with PMLD are likely to be non-verbal, may be non-mobile and are likely to have complex health issues and need round-the-clock care.
Ms Graham said many people are still feeling the impact of doing without services during the pandemic such as postural care, which is important for people with mobility issues.
She told the inquiry: “We know of instances where individuals’ postural care was so compromised that they have died, or their quality of life was significantly reduced, and it will hasten their death.”
Her own daughter was living in supported housing and Ms Graham was not able to see her for three months, and she said her daughter’s mental and physical health deteriorated during that time.
Jenny Miller, chief executive of PAMIS, said PMLD families felt invisible and “side-lined”, and their needs were not understood by authorities during the pandemic.
The inquiry heard carers were left feeling exhausted, depressed and even suicidal as they struggled to care for PMLD loved ones without the support they usually had.
Ms Miller said the pandemic will have a long-term impact on people with PMLD, such as the interruption of postural care which can help keep someone’s posture and positioning safe so they do not develop scoliosis.
She said: “These interventions didn’t happen because they didn’t have the right input from healthcare practitioners. People will die earlier because they haven’t had that intervention.
Day 23 of the Inquiry's Health and Social Care Impact Hearings begins at this morning at 9.45am.
Today we will hear evidence from @PAMIS_Scotland, @LongCovidScot, @kidneycareuk and @drclairetaylor.
Watch online: https://t.co/hD1rJTPw0V pic.twitter.com/UCje92YwZI
— Scottish COVID-19 Inquiry (@covidinquirysco) March 13, 2024
“Some people now aren’t able to have the spinal surgery that they would have been able to have, so that physical wellbeing will have a lasting impact.”
The inquiry also heard from Jane Ormerod, chairwoman of the charity Long Covid Scotland, who was diagnosed with long Covid in June 2020 and still suffers from it.
She said accessing care for the condition through a GP can be a “lottery” and the group is calling for a multi-disciplinary hub or focus for care.
The inquiry heard many people with long Covid are unable to work, and that it can also have a detrimental impact on people’s mental health and wellbeing and family life.
The group is calling for more action from Scottish Government.
Ms Ormerod said: “We’re very clear about what we want, we want to be listened to and for lived experience to be at the heart of ongoing solutions, and that can only happen with a commitment from the Scottish Government to a dedicated plan to ongoing funding and continued work of the development of long Covid services.”
A Scottish Government spokesperson said it is committed to “learning lessons from the Covid-19 pandemic in order to prepare for the future”, but added it would be “inappropriate to comment on the detail of evidence being considered” by the inquiry while hearings are ongoing.
They added: “Through our £10 million Long Covid Support Fund, we are making available £3 million this financial year to support NHS boards to increase the capacity of existing services, and develop more clearly defined local pathways.
“Twelve of our NHS boards also have active long Covid pathways in operation, and elsewhere well-established referral pathways exist to a range of services which can provide support to people with symptoms resulting from long Covid.”
The inquiry continues before Lord Brailsford in Edinburgh.
