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.

Our final report, ‘Then There Was Silence’, published in September 2021, brought this research together alongside new analysis and an evaluation of how the voluntary sector responded to the meet the needs of children and families. It drew on the experiences of countless families, through surveys and interviews, as well as information obtained through Freedom of Information requests and other research.

Key findings in the report are that:

  • Children and families have been isolated and abandoned; and not been listened to.
  • Covid restrictions meant services were stopped or reduced; and many are still slow to return.
  • Mental health and wellbeing of all the family has deteriorated.
  • Children’s conditions have worsened and needs become more complex; delays in assessments mean needs haven’t been identified.
  • The charity sector demonstrates agility and flexibility and was able to extend its reach to help support families.

What we would like to happen

As a result of our findings, we have identified five vital steps for the UK Government, local government and the NHS.

  1. Prioritise the needs of disabled children and their families within COVID recovery plans and programmes.
  2. Tackle the backlog in assessments and ensure that children’s needs are re-assessed in light of missed support during the pandemic.
  3. Ensure the right support is in place for all children and families, including education, health (including mental health), therapies and equipment.
  4. Take a whole family approach to assessments and support, including siblings. This should include the provision of respite/short breaks and opportunities for families to take part in activities to overcome the isolation felt by so many.
  5. Invest in disabled children’s health and care services.
Policy and influencing