Sophie Pilgrim, Director of Kindred, urges Scottish government to prioritise parents of children with life limiting conditions for promising vaccine

Published by Rupert Douglas on November 16th 2020, 4:04pm

Kindred, an advocacy organisation that supports parents of children with complex needs across Scotland, is urging the Scottish government to prioritise these families to receive the promising Covid-19 vaccine.

The charity has released a report that highlights the impact of the pandemic lockdown on the families of children who have complex needs and life limiting conditions. The report is a survey of parents from 17 Local Authorities across Scotland. The aim to better understand the implication of lockdown on families in August 2020 as schools prepared to re-open.

The results of the survey 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.

Kindred is hoping that the government will recognise the contributions to care that parents and siblings have had over the course of 2020 as the pandemic has continued to hit government services, special education and local authorities care services. Public recognition of the extraordinary lengths that these families have gone through to shield themselves and their loved ones through priority access to any vaccination programmes would help parents feel that their efforts had been noted.

Sophie Pilgrim, Director of Kindred, commented:

“Our report provides evidence that the Covid-19 pandemic had a devastating impact on families of children with complex needs and life limiting conditions. Anyone reading this report will be moved by their plight. Many families started shielding before schools closed with the loss of all care and support. Some of these children require two to one 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.

“We need to recognise the long-term 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.

“Parents put their children first. And we must work together and ensure they are amongst the first to get the vaccine.

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