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Published by Scottish Council for Voluntary Organisations

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Parents of children with life-limiting conditions in vaccine priority plea

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Kindred has said lockdown has had a devastating impact on the families

A charity is calling for parents of children with complex disabilities and life limiting conditions to be amongst the first to receive a Covid-19 vaccine.

The plea comes from 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 has released a report today (16 November) highlighting the “devastating” impact of the pandemic lockdown on families of children with exceptional health needs.

Kindred is calling for public acknowledgement of the extraordinary efforts of these parents, many of whom had started shielding weeks before lockdown, and has asked for a letter from the Scottish Government to families. 

The charity conducted a survey of parents from 17 local authorities to better understand the ramifications of the lockdown months on these vulnerable families in August 2020 as schools prepared to reopen.

The results show that:

  • 93% of these families experienced an impact on their ability to meet their children’s medical and care needs due to the pandemic; 63% 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. 
  • Over a third of parents received no respite care before the pandemic and this dropped to 60% since the start of the pandemic. 

The charity has written to the Cabinet Secretary for Health and Sport, Jeane Freeman MSP, and to Deputy First Minister and Cabinet Secretary for Education and Skills, John Swinney MSP, urging that these parents be given priority when distributing any vaccine. 

The report provides evidence that parents were left caring entirely alone in the home environment.  There was an even greater impact on single parents.  Despite the high level of need of all the children, some parents did not even get a phone call from professionals during the pandemic.  These parents fear falling sick and being unable to look after their vulnerable children.

This is the case for Alex Davey from East Lothian and her six-year-old son, Benjamin, who has complex medical needs including tube-feeding, epilepsy and overnight ventilation.

Davey received a letter instructing her that Benjamin met the criteria for shielding in March. For his safety all respite and at-home care services received were brought to a halt, leaving the parents to be the only people providing care for Benjamin and his two sisters. Since March, Benjamin has been hospitalised six times, often involving full-time ventilation in critical care.

Davey’s main concern is that she and her husband will themselves contract Covid-19, rendering them incapable of meeting Benjamin’s complex care needs, potentially for a long period of time.

Sophie Pilgrim, director of Kindred, said: “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.

“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 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."