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.
Introduction
The first witness to give evidence is Mr Eddie McConnell, chief executive of Down’s 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.
Lockdown-1 healthcare support removed
The mantra from the government and NHS of ‘‘protecting the vulnerable’’ was in practise making this demographic feel even MORE vulnerable.
‘‘Many of the professionals that were involved in providing a range of different support whether social workers or education many of those stepped right back in the early days…social care got withdrawn over-night.’’
‘‘They felt enormously vulnerable…MORE vulnerable.’’
Isolation harms
Even in 2023 many within the down’s syndrome community have not recovered their pre ‘pandemic’ health status due to the isolation policies and removal of structure. Many have retained habits formed during the lockdown.
‘‘The removal of that structure has a really PROFOUND impact…it definetely resulted in mental health and well-being deteriorating..depression occuring and loneliness and isolation becoming very significant.’’
Further disturbing details within Mr.McConnels statement outline the disastrous effects of ‘COVID’ fear propaganda on the psyche of those deemed vulnerable.
‘‘In the course of the conversation somebody mentioned the word COVID, and I acknowledged how difficult the last few years have been. It led to one of the members in the group almost hyperventilating. He had to leave the room and be supported by my colleague. He needed to be coaxed and supported to come back in.’’
Harrowing calls for help
Further devastating harms from lockdown policies are made evident with desperate mothers even threatening to harm their own daughters to get help. Many adverse consequences on families remain to this day.
‘‘You talk about a parent who became so desperate for help for her daughter that she actually harmed her daughter as she thought that was the only way to obtain help.’’
‘‘Many of our families became very desperate..the support they have experienced had been withdrawn…they were really really anxious…really worried.’’
Clinical frailty scale
Here it is revealled that during lockdown the NHS clinical frailty scale was ‘‘wrongly’’ applied to those with down’s syndrome and learning disabilities.
‘‘A number of families had reported to us that their loved one was possibly NOT going to be prioritised for treatment..there were in hospital…because somebody had completely inappropriately, completely inappropriately used the clinical frailty scale just because the person had down’s syndrome.’’
Medical discrimination
Mr.McConnell goes on to explain:
‘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''
Discriminatory DNACPRs
Mr McConnell also expresses serious concern over the liberal application of DNRs (do not resuscitate) orders placed upon those with downs syndrome during lockdown. Unsolicited calls were commonplace.
The inquiry goes onto reveal the DNR orders were far more prevelant during the lockdown period than was otherwise the case prior to 2020. Mr.Mconnell is clear the prejudice and discrimination was unacceptable.
‘‘At best it’s ignornace but in some cases it’s DEFINETELY predujice and discrimination…we were SHOCKED to discvoer how quickly it came to the surface and the most obvious examples of this were in the conversations around do no resuscitate orders.’’
Fit and healthy man placed on DNR
An 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 down’s syndrome. This was shockingly not a rare occurance during lockdown.
'‘we DEFINETELY KNOW it wasn’t an isolated incident..it is completely wrong and completely unacceptable'‘
Equality act
Mr.McConnel goes onto explain in his statement the discrimination against those with down’s syndrome was likely illegal.
‘‘I do think it is probably a contradiction of the Equality Act and the protected characteristics of disabled people.’’
GPs forced to back off
‘‘Following another heavy intervention most stepped back.’’
Sedation before vaccination
Within Mr.McConnells statement (not mentioned at inquiry) he expresses concern that some people with down’s syndrome were being sedated prior to receiving their COVID ‘vaccinations.’
Lockdown healthcare withdrawal effects
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
‘‘Any future national health emergency must actively guard against the wholly inappropriate use of treatment priority mechanisms such as the Clinical Frailty Scale and Do Not Resuscitate Orders for people with Down's syndrome and people with learning disabilities more generally.’’
-Paragraph 165 of statement
Witness no.2-Ms.Stephanie Fraser
Introudction
The second witness to testify in this session is Ms.Stephanie Mary Fraser aka as ‘‘Baroness Fraser of Craigmaddie’’ (a life peer) who has been the Chief Executive of Cerebral Palsy Scotland since 2012. She is also chair the Scottish Government's National Advisory Committee for Neurological Conditions (NACNC).
There are around 12,000-15,000 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.
School closures disastrous
Ms Fraser further explains how school closures were 'a ''DISASTER'' for the cerebral palsy community.
Therapies stopped
Social interaction stopped
Children disengaged from learning
Health conditions got worse
‘‘...i found it quite EXTRAORDINARY that 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
Stay at home messaging harmful
The incessant ‘COVID’ fear mongering from the media, NHS and politicians laid bare with long term adverse mental health consequences.
‘‘Technically these children COULD HAVE attended schools…so many just stayed at home FAR FAR longer than the rest of us even after restrictions lifted.’’
Disastrous health-care survey results
Adverse health consequences once again laid bare due to the lockdown on those with CP and their families who were restricted or unable to access essential health services.
May-Sept 2020 survey
‘‘What we found was the BIGGEST issues tended to be PHYSICAL…stiffness..pain…growing out of equipment…as time went on the reported declines in mental health rose SIGNIFICANTLY.’’
These declines were not restricted to those with CP but their families also. 44% reported it effected someone in their family.
‘‘Care arrangements were TOTALLY scaled back at the beginning…by Feb 2021 63% of PRE 'COVID' care services STILL had NOT been re-instated.’’
‘‘VERY COMMON was this feeling of isolation.’’
‘'17% reported they hadn’t even been able to SPEAK to their GP or other healthcare professional....appointments were cancelled.'‘
Shielding harms on mental health
Here Ms.Fraser outlines yet more extreme harms accrued from shielding and lockdown policies upon the CP community.
‘‘I think there were lots of UNINTENDED CONSEQUECNES of shielding.’’
‘‘Mental health issues were SIGNIFICANT…feelings of isolation…feelings of anxiety…access to ANY support and help was NON EXISTENT.’’
‘‘The mental health impact was ENORMOUS.’’
‘‘We know of families who took a VERY LONG TIME to even leave their houses.’’
Lockdown harms more serious than ‘COVID’
Ms.Fraser concludes by stating how public ‘health’ policies were more harmful than ‘the virus’ with permanent adverse health consequences for those with CP.
Declines in physical function due to lack of movement
No access to physiotherapy
No access to swimming pools, hydrotherapy
No basic healthcare support
‘‘I am NOT convinced we EVER needed to shield…i’m not convinced the shielding policy was the right one.’’
'‘Basic support services not continuing THAT was what caused the biggest issues NOT the COVID.'‘
Final statement comment
Do they know something we don’t?
‘‘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 Ms 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