A leading charity is urging the Scottish Government to include parents of children with complex disabilities and life limiting conditions to be amongst the first to receive the promising 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 (16th 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. Such a letter would enable parents to feel that their efforts had not gone unnoticed and, in some way, help them come to terms with the trauma experienced over this period.
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.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.
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 the recently announced 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.
Alex 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 Alex and her husband 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.
Alex’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.
Early access to the vaccine is therefore imperative according to Kindred to ensure that families like Alex’s can be sure that they can continue to care for their child.
Further recommendations to the Scottish Government:
- The report shows a disparity between the experience of those families who received the support and advice from health professionals, particularly on shielding, compared to those who didn’t. On this evidence, Scottish Government is being urged to ensure that professionals contact parents and charities should be funded to provide peer support.
- Siblings play a vital role in the care and support of a disabled brother or sister and Kindred is urging that Self-Directed Support is available for adult siblings to be paid as carers within the home in the event of another lockdown. (see case study of Dr Gael Gordon in Notes to Editors and image attached)
- The needs of families for respite should be taken into consideration with regards to special schools, with consideration given to keeping them open in the event of a second lockdown and providing the resources to do this.
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.
“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.“
