The COVID-19 UK Inquiry meets today 28 February . The Module 3 Preliminary Hearing will look at “the impact of the pandemic on healthcare”.
The Inquiry invited us to send in draft evidence on our views on emergency planning and preparedness up to January 2020.
Sue Elsegood* writes about how people already using ventilators were treated:
“I have muscular dystrophy and rely on breathing support. During the COVID-19 pandemic I was put in the unenviable position of needing to threaten legal action against the hospital which I am a patient under for respiratory health issues.”
“This was because I was told that despite the general public being advised by government to use PPE, and lockdown, we as outpatients using ventilators no longer would be supplied with anti-bacterial/anti-viral filters for our ventilators — because according to the hospital, we didn’t need them — even though pre-pandemic they were prescribed. We are at high risk of chest infections, and the filters help prevent infection.”
“It seemed to me that disabled outpatients using ventilators long-term were being treated less than equally to inpatients on ventilators. I think the hospital was put in this position because the government failed to have adequate stocks ready in the case of a pandemic. Health workers told me there was a shortage of filters which were being shipped from China (where the COVID outbreak began) and would take at least three months to arrive. They said there was no guarantee the filters would be fit for purpose as they would most likely not reach the British safety kite mark standards for use. My impression was that outpatients were being told filters were not needed because of the shortage of supplies. These filters could have been manufactured to required standards in the UK … why not? They could have been stored and delivered in a timely manner, why not?”
“This did not make logical sense especially during the pandemic.”
“After the complaint I made with the support of WinVisible, Disabled People Against Cuts and a legal firm [sending a letter before action] the hospital conceded and sent me ventilator filters and said they would be supplied to other outpatients as long as supplies allowed. This was very stressful to have to complain to a hospital that had supported me so well up to that point for a policy during the pandemic that discriminated against disabled outpatients on ventilators. The cause being central government’s inadequate planning and response pre- and during the pandemic — yet again treating disabled people as disposable.”
“Baroness Jane Campbell arranged for questions to be asked in the House of Lords on the matter via one of her peer colleagues, I do not know what the results were of this.”
In planning for a pandemic, it seemed that the situation of disabled people was addressed only in a negative and discriminatory way. Government and statutory agencies deliberately bypassed and neglected the needs and vulnerabilities of disabled people and how we were likely to be affected in particular ways.
Government planning and the priorities chosen, operated directly against our survival. We believe the opportunity was taken to “cull” older and disabled people — majority women — who were 60% of those who died in England, 68% of those in Wales. ONS figures from the 2021 census indicate a drop in the proportion of disabled people in the general population. Women/people of colour, including care workers, are also disproportionately over-represented among those who tragically died.
* Sue is a member of WinVisible, DAN (disabled people’s Direct Action Network) & METRO-GAD (Greenwich Association of Disabled People).