UK Press Release, Monday 16th November

Image of young boy with his sisters cuddling

Benjamin at home with sisters Jackie (left) and Caitlin (right)

 

Priority for parents of children with life limiting conditions for the Covid-19 vaccine is urged by leading charity

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 issued a report 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 Minister 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 of Alex Davey from East Lothian and her six-year-old son, Benjamin, who has complex medical needs including tube-feeding, epilepsy and overnight ventilation (full case study in Notes to Editors).

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)

• 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.

– ENDS –
1 ‘Covid-19 and Families of Children with Complex Medical Needs’: Online survey of 42 parents whose children have complex disabilities and life limiting conditions.

Notes to Editors

The Kindred report – “COVID-19 and Families of Children with Complex Medical Needs” – and letter to Cabinet Minister for Health & Sport, Jeane Freeman MSP, can be obtained on request.

For further information on the press release please contact Ariadna Roca at ariadna.roca@orbit.scot or call 0746 851 5685.

For further information about Kindred’s report and its findings please email enquiries@kindred-scotland.org

Case studies

Alex Davey:
Alex Davey lives with her husband, three young children in East Lothian. Her middle child, Benjamin (6) has complex medical needs including tube-feeding, epilepsy and overnight ventilation. Benjamin was placed in the shielding category from March until August this year, and the family were home-schooling and isolating from a week before the official national lockdown.

The family had previously been in receipt of some respite services and support from carers in the home; however all respite services were halted during the lockdown and the family took the difficult decision to also stop their home carers due to the increased risk of infection they posed.

Juggling Benjamin’s medical needs, personal care, therapy and education with home-working and home-school his two sisters proved challenging during lockdown. Added to this, Benjamin’s health has been unstable and he has had at least six hospital admissions since the start of the pandemic, often involving full-time ventilation in critical care.

Having a child in hospital whilst shielding during the pandemic is even more difficult than usual, due to constraints on switching parents, not being able to use public transport to and from the hospital, and having nowhere safe near to the hospital to entertain Benjamin’s siblings.

In August, the family made another difficult decision to allow all three children to return to school with their friends, whilst still trying to avoid all unnecessary contact outside the home. Having been reassured by medical professionals that Benjamin is at low risk from Covid-19, Alex’s main concern is that herself and her husband will contract the disease, rendering them incapable of meeting his complex care needs, potentially for a long period of time.”

Image of a young boy in a wheelchair playing with his sisters

Left to right Jackie, Benjamin and Caitlin

Gael Gordon:
Dr Gael Gordon is a part-time lecturer in Vision Sciences at Glasgow Caledonian University and a mother of three teenagers one of whom, Romi, has exceptional health care needs.

Romi’s two older siblings, Ella (17) and Felix (19) were both at home during lockdown, and continue to be as university classes take place online.

Romi is 15 and has Rett Syndrome, a neurodevelopmental disorder that affects about 1 in 10,000 girls (it is very rare in boys). Romi’s care needs are significant. She has no speech, no hand use, limited mobility and uncontrolled seizures and other disabling episodes and she has a feeding tube. She requires 2:1 support throughout the day and needs 1:1 supervision overnight. In normal times, she receives a package of support that reflects Romi’s very complex needs.

At the start of lockdown, Romi was placed into the shielding category and had no school throughout the whole period. Her parents felt unable to allow carers to come to their house, but without support the burden was overwhelming. Gael was unable to manage Romi’s care and was having a significant effect on her mental health.

The government issued advice fairly early on, recommending that Local Authorities allow families to use their Self-Directed Support budget in a flexible way, at a time when the usual respite care was unavailable.

Gael’s Local Authority sought legal advice when she requested to be allowed to use the budget to pay family members to provide support. She was subsequently informed that they had been reassured that it was lawful to deny her request as the Government’s advice did not make it mandatory to accede to requests for flexible use of the budget. It took intervention from her local MP to resolve the situation and allow her to use the budget flexibly.

Image of the seaside with a mum with two daughers

Right to left, Romi with her mum Gael and older sister Ella.