‘ PRIORITY’ PLEA ON VACCINE
Parents of children with severe disabilities call for support
AUNIVERSITY professor whose daughter lives with a life- limiting illness has joined calls for parents such as her to be prioritised for the Covid- 19 vaccine.
Dr Gael Gordon teaches at Glasgow Caledonian University and her 15- year- old daughter Romi has the neurodevelopmental disorder Rett syndrome.
The condition means she needs significant attention from carers.
Romi cannot speak and has no hand use, limited mobility and uncontrolled seizures, as well as other disabling episodes, and she is fed through a tube.
Dr Gordon’s mental health was severely affected by the pressures of caring for her daughter during lockdown and she was too worried to allow carers into her home.
Now she has joined calls for parents of children with severe disabilities to be given priority access to a Covid vaccine when one arrives.
The charity Kindred has written to Health Secretary Jeane Freeman and Deputy First Minister John Swinney to highlight how the difficulties faced by parents with severely ill and disabled children are made worse by the pandemic.
Research carried out by the charity, which represents parents of children with complex needs, found that 63% of families had been severely impacted in caring for their children by the pandemic.
Many parents have suffered from sleep deprivation, and as many as 60% of families were receiving no respite care after the start of the pandemic.
Sophie Pilgrim, the charity’s director, said the impact of the pandemic on the families it represents was “devastating”.
She said: “Many families started shielding before schools closed with the loss of all care and support. Some of these children require twotoone support in school and other care settings, and yet parents had to cope from March to August, many with no help at all.
“As the vaccine becomes available, we must prioritise parents who are providing medical care for their children and cannot afford to get sick themselves.
“Many parents received no respite care before the pandemic, and those that did lost their care with lockdown. Serious sleep deprivation puts parents at risk of depression, accidents and long- term conditions. One of the parents told us ‘ I feel like I am drunk’.
“We found that many parents have to cope on five hours of broken sleep a night, well below the NHS recommendation of a minimum seven hours a night.
“We need to recognise the longterm exhaustion of these families. Special schools are all the more important and need to be supported to carry on their excellent work and to keep their doors open.”
The Scottish Government would not commit to allowing the parents of children with complex needs priority access but said those considered “most at risk” would be prioritised.
A spokesman for the Government said: “The Health Secretary has already committed to providing more details to Parliament on the delivery of Covid- 19 vaccines and, with the agreement of Parliament, she aims to do this shortly.
“We will prioritise to protect those considered to be most at risk, in line with the forthcoming final advice from the Joint Committee on Vaccinations and Immunisations.”
He added that the Scottish Government supported the “four nations” approach to securing vaccines.