A leading charity has raised concerns over an apparent Scottish Government u-turn which sees unpaid carers now no longer included in the “first-wave” of COVID-19 vaccinations.
The concern has been raised by Kindred, an advocacy organisation supporting parents of children with complex needs, which has warned of the impact on these children if their parents contract the virus and are unable to provide care.
The charity had made the vaccine call in a letter to Health Cabinet Secretary, Jeane Freeman MSP, on 11th November on the back of a report it published highlighting the “devastating” impact of the pandemic lockdown on families of children with exceptional health needs.
However, on 3rd December, in her statement to the Scottish Parliament she noted that, alongside those most vulnerable on an age and health basis, the “only sectoral exception [for vaccine priority] is for the health and social care workforce.”
On 4th December, it all became clear in a “Vaccine stakeholder note” from the Scottish Government Directorate for Mental Health and Social Care that “carers and their families are not included in the prioritisation list.”
Director of the charity, Sophie Pilgrim, has written to the Cabinet Secretary on the back of this apparent u-turn on her earlier commitment (letter available on request), noting:
“At this time of national crisis, it seems we are prepared to ignore the plight of our most vulnerable children. These children, with shorter lives, have lost out on therapy, education and social opportunities. Their parents, on whom they are totally dependent, are exhausted to the point of burnout.
“In Scotland, we pride ourselves in aspiring to be the ‘best country in the world for children to grow up’. We should dare to be different and stand up for our children who are most in need. I urge you to include unpaid carers amongst the first to receive the vaccine.”
The repeated call comes on the back of a survey undertaken of the parents of children with complex health needs.1
The results show that:
- 93 percent of these families experienced an impact on their ability to meet their children’s medical and care needs due to the pandemic; 63 percent said that the impact of the pandemic on their ability to provide care was ‘big’ or ‘severe’.
- Two out of every three parents who took part in the survey said sleep deprivation was one of the main factors that impacted their ability to care for their children. It was the norm for these parents to get an average of five hours of broken sleep per night. Kindred has called for an urgent need to investigate the provision of overnight respite care across Scotland.
- Over a third of parents received no respite care before the pandemic and this dropped to 60 per cent after the start of the pandemic. This highlights the importance of schools in supporting parents and giving them a break from caring. Almost all the children attended special school with access to therapy, and the expertise of Additional Support for Learning staff. There is no doubt that schools are preventing crisis and family breakdown where a child has high care needs.
Sophie Pilgrim, Director of Kindred, commented: “This apparent u-turn by the Scottish Government is deeply devastating news for the families of children with complex needs and life limiting conditions.
“At this time of national crisis, it seems we are prepared to ignore the plight of our most vulnerable children. These children, with shorter lives, have lost out on therapy, education and social opportunities. Their parents, on whom they are totally dependent, are exhausted to the point of burnout and simply cannot afford to get sick.
“In Scotland, we pride ourselves in aspiring to be the ‘best country in the world for children to grow up’. We should dare to be different and stand up for our children who are most in need.”
Alex Davey, from East Lothian, is fulltime carer to her six-year-old son, Benjamin, who has complex medical needs including tube-feeding, epilepsy and overnight ventilation.
She has written a blog to highlight her disappointment and said:
“My key concern as Benjamin’s mother is that my husband and myself contract Covid-19, rendering us incapable of meeting his complex care needs, potentially for a long period of time.
“Early access to the vaccine is therefore imperative to ensure that families like ours can be sure that they can continue to care for their child.
“One can therefore only imagine our joy when we heard that unpaid carers would be among the first wave to receive the vaccine. We cheered, we celebrated, we called each other up and cried tears of pure relief. We were no longer overlooked.
“In fact, we are not just overlooked, we were cruelly misled and our hopes were built up, only to be dashed.
“We cannot understand why the Scottish Government has reneged on its commitment and we would urge it to do the honourable thing and honour the original commitment made.”
