Together for Short Lives
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A COVID recovery plan for children who need palliative care

Most families caring for a child with a life-limiting condition have felt even more isolated and alone than normal during the Coronavirus pandemic, with some parents describing that they feel like a “forgotten group”. The lockdowns have had a devastating impact: too many seriously ill children are not receiving support for their disability or their medical condition via health services or school. This has had detrimental impacts on their children’s disabilities during a time of reduced levels of support at home during the pandemic. We join with our partners in the Disabled Children’s Partnership in calling on the government to create an ambitious and funded COVID recovery and catch up plan for disabled children, covering not just education, but also health and wellbeing, and support for all the family.

Early in the COVID-19 pandemic, Together for Short Lives, in collaboration with Martin House Research Centre and the University of Southampton, found that most families caring for a child with a life-limiting condition have felt even more isolated and alone than normal during the Coronavirus pandemic, with some parents describing that they feel like a “forgotten group”:

  • 93% of families felt isolated during the pandemic
  • 57% said isolation has brought up negative memories
  • 95% are fearful that their child will catch the virus from their parent
  • 93% fear their child’s treatment will be cancelled or delayed.

For families caring for seriously ill children, feelings of isolation and loneliness are already very common, but the coronavirus pandemic has intensified this. Many parents, exhausted after months of providing 24/7 care for their child at home.

The Disabled Children’s Partnership (DCP) research findings

Together for Short Lives is a steering group member of the DCP. Through its expert Parent Survey Panel, DCP has conducted a series of surveys during 2021 to track the experiences of disabled children and their families. The panel of 1,200 families has been set up to be broadly demographically representative of the population of families with disabled children across England in terms of geography, disability and ethnicity.

The results have been shocking.

Our first survey report – The Longest Lockdown – focused on the physical wellbeing of children and families and surveyed parents in January 2021. The findings reveal disabled children are not receiving support for their disability or medical condition via health services or their school placement. Parents report a detrimental impact of their child’s disability during a time of reduced levels of informal and formal support at home during the pandemic.

Over half (51%) of families stated that these delays had a negative impact on their child’s condition.

Our second report – The Loneliest Lockdown – surveyed parents in March and focused on the impact that the COVID-19 pandemic has had on the mental health and wellbeing of disabled children, their parents and siblings. This survey was conducted between 2 and 16 March 2021, with the results revealing that disabled children and their families are at risk of developing serious mental health issues as a consequence of the COVID-19 pandemic on their lives.

72% of parents report that their child is often unhappy, downhearted or tearful, whilst almost 9 out of 10 parents reported some level of anxiety in themselves and almost half (46%) had probable depression.In usual times 80% of parents would qualify for psychological support within the NHS.

Our third report – No End In Sight – surveyed over 400 parent carers of disabled children in April 2021. The results show that – despite welcome government assurances that services should be reaching families – many families still cannot access essential support.

  • Over 50% of families are still unable to access therapies vital for their development, such as occupational, speech and language and physiotherapy.
  • 6 out of 10 families are still experiencing delays to health appointments to review and treat long-term conditions, such as sessions to address unexpected poor health; review treatments or medication for children with progressive conditions; or identify additional support.
  • Unfortunately, the report also highlights that – despite restrictions lessening – families remain more socially isolated than the rest of the population, with 1 in 2 parents and 3 in 4 disabled children still socially isolated.

These worrying statistics therefore show that urgent action is needed to address the fact that support services are not reaching children fast enough – creating devastating health impacts.

What we would like to happen

We need holistic COVID-19 recovery policies that provide support for burnt out families suffering from poor mental health, and makes up for the absence of therapies which has impacted on children’s physical development and opportunities to develop vital life skills.

These policies plan should not just cover education, but also health and wellbeing. A narrow focus on educational attainment is unlikely to be successful in enabling the majority of disabled children to catch-up. Not least because where an absence of therapies and services has caused children to fall behind in terms of speech, communication, social and motor skills, or for them to be in pain, they will not be ready to learn.

We believe such recovery policies should include:

  • A therapies catch-up plan to address where children have regressed or plateaued in their speech, communication, physical development, or social skills.
  • Short breaks for families to address high levels of family exhaustion.
  • Flexibility to extend or allow repeat funding for young people in further education, especially where courses to facilitate independence and employability have been impacted.
  • Additional support for children and young people at key transition points.
  • Additional support for the mental health and wellbeing of children and families.
  • Access to activities to overcome the social isolation that many have suffered during lockdown.
Policy and influencing