Scottish COVID-19 inquiry Impact hearing | Health and social care | 14 March 2024 (morning session)
Featuring two moving testimonies from Eddie McConnell, Chief Executive of Downs syndrome Scotland and Stephanie Fraser, Chief Executive of Cerebral Palsy Scotland
The first witness to give evidence is Mr Eddie McConnell, chief executive of Downs syndrome Scotland. Established in 1982 Down’s Syndrome Scotland is a member-led charity and the only charity in Scotland dedicated solely to supporting people with Down’s syndrome and their families and carers. Eddie also also chair of the Scottish Commission for People with Learning Disabilities and a father of a young man with Down's syndrome.
Here it is revealled that during the pandemic the NHS 'clinical frailty scale' was wrongly applied to those with downs syndrome.
‘‘A number of families had reported to us that their loved one was possibly not going to be priorotised for treatment..because somebody had completely inappropriately used the clinical frailty scale just because the person had downs syndrome.’’
Mr MConnell also expresses serious concern over the liberal application of do not resucitate orders placed upon those with downs syndrome.
‘a man in his 20s attended the cardiologist with his mother and the cardiologist said: 'i do not know whether it is worth operating on ''someone like him'' - Faryma Bahrami junior counsel to the inquiry
The inquiry goes onto reveal the DNR orders were far more prevelant during the pandemic/lockdown period than was otherwise the case prior to 2020. Mr.Mconnell is clear the prejudice and discrimination was unacceptable.
‘‘we are shocked to discover how quickly it came to the surface and how prevelant it was during the pandemic..the most obvious examples of that were conversations around do not resuscitate orders.’’
Another example given is of a ‘‘fit and healthy’’ 40yo man being placed on a DNACPR ‘‘just in case’’ by his GP solely because of having downs syndrome. This was shockingly not a rare occurance during the pandemic.
'‘we DEFINETELY KNOW it wasn’t an isolated incident..it is completely wrong and completely unacceptable'‘
Within Mr.McConnells statement he further expresses concern that some people with downs syndrome were being ‘sedated’ prior to receiving their COVID vaccinations.
Towards the end of his statment Mr McConnell explains the harms from lockdown due to withdrawal of normal care services. Even now, stating that many families have still not returned to pre pandemic levels of care and support.
‘‘There is little doubt that there has been a profound impact on the mental health and wellbeing of our community of individuals with Downs syndrome and their family carers and parents….Many parents reported feeling abandoned by the authorities during the pandemic and that a return to what they experienced prior to the pandemic, is simply not happening.’' -Paragraph 162 of statement
Mr McConnells’ concluding statements make some intriuging points.
I have no desire to 'build back better' I am not even sure I know what that means. I am much more motivated and inspired to 'build forward differently'. This is the moment for leaders across the third sector to bebig, bold, and brave. It's time to put the Third Sector First.’’ - Paragraph 188 of statement
‘‘Our greatest hope for the Inquiry is that all lessons that can be learned, are learned. People with Down's syndrome, and people with learning disabilities more generally, must never find themselves in this position again, should another national emergency arrive. They must be equally valued and equally respected as fellow citizens.’’ -Paragraph 191 of statement
Witness no.2- The second witness in this session is Ms Stephanie Fraser who has been the chief executive of cerebral palsy Scotland since 2012.
NB: There are around 12000-15000 people in Scotland living with CP. Cerebral palsy (CP) is an ‘umbrella term’, meaning that it’s a name given to a group of disorders and functions. CP is the most common physical disability in children. Around 1 in 500 births will result in a diagnosis of CP and in Scotland around 150 children are diagnosed each year.
In this clip Ms.Fraser explains the effect lockdown had on healthcare provision for the CB community not just for themselves for entire families.
‘Care arrangements were TOTALLY scaled back at the beginning…By ‘Feb 2021 63% of PRE 'COVID' care services still had not been re-instated'
Combined with physical and mental decline and ‘‘very common’’ was the feeling of isolation.
'17% not even able to SPEAK to their GP....appointments were cancelled'
Here Ms.Fraser makes a sobering assessment of the harms of lockdown and that these caused far more issues than the virus.
‘‘I am NOT convinced we EVER needed to shield''
'‘Basic support services not continuing THAT was what caused the biggest issues NOT covid'‘
Ms Fraser further explains how school closures were 'a ''DISASTER'' for the cerebral palsy community.
‘‘...i found it quite EXTRAORDINARY all these things stopped…It left families UNBELIEVABLY isolated'‘
‘‘The closing of the schools was a disaster for our community and led to so many problems, isolation and all the rest of it.’’ -Paragraph 127 of statement
‘‘When schools were not being reopened because the teachers'unions were worried about the safety of their teachers, I felt very uncomfortable with that because I was seeing the impact on our beneficiaries and for me the population of people with cerebral palsy was more important than a healthy adults concerns.’’ -Paragraph 137 of statement
Final comment-
‘‘I hope the Inquiry can identify some lessons learned that we can all take away and do in preparation for another pandemic.’’ -Paragraph 139 of statement
End
Links:
Full video-YouTube Scottish COVID-19 inquiry-Impact hearing | Health and social care | 14 March 2024 (morning session)
Full statement Mr Eddie McConnell- https://www.covid19inquiry.scot/sites/default/files/ev-documents/sci-wt0450-000001.pdf
Full Statement Mrs Stephanie Fraser- https://www.covid19inquiry.scot/sites/default/files/ev-documents/sci-wt0461-000001.pdf
https://news.stv.tv/east-central/desperate-mum-threatened-to-harm-daughter-in-bid-for-help-covid-inquiry-told
https://www.dsscotland.org.uk/
https://cerebralpalsyscotland.org.uk/
https://www.dsscotland.org.uk/wordpress/wp-content/uploads/2018/01/Revised-10-facts-about-DS.pdf