The Care Crisis

WellChild urgently calls for a ‘new deal’ for families with seriously ill children

Survey results

WellChild has received evidence from families and WellChild Nurses working across the country that families are increasingly being asked to fill the void left by complex care staff shortages and that this is having a dangerous impact on an already tired and weary population of unpaid carers, whose children require round the clock medical supervision and complex care.

78% of families surveyed reported problems with their care package since the Covid-19 outbreak

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88% of families surveyed said there was an expectation from their care provider that they would cover ever more frequent staff shortages

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57% said the extra care responsibilities piled on to already stressed parents has had a negative impact on their mental health.

The Impact

The impacts of these changes to care packages on families have been enormous. 57% said the extra care responsibilities piled on to already stressed parents has had a negative impact on their mental health. It has also impacted the physical health of 63% of the parents. 37% said that they felt the changes to their care package have had a negative impact on their ability to keep their child safe.

“This whole situation has affected every aspect of our lives. I am physically and mentally drained. My son requires waking night care and we just can't get it”

Survey response from a parent carer

Alison and daughter Jess

Currently Alison and daughter Jess don’t have enough nurses to cover all the weekly shifts. Two of the nursing shifts each week are not covered and Alison is expected to cover these. Alison also only has two nurses on her package and if either one of those is sick with Covid or isolating, there is no cover. Over Christmas they struggled because their carer took time off and another was isolating. There is no plan B, no extra carers that can just step in to help cover Jess’ care package as she is so complex, there needs to be a contingency plan in place other than relying on Alison.
Share your experiences in our survey

A ’New Deal’ for parents and carers

It is not acceptable or sustainable for parents to be expected to cover care staff shortages, which will often include day and night shifts. WellChild is therefore urgently calling for a ‘new deal’ for parents and carers of children with complex care needs. In particular:

  • Urgent action to address complex care workforce shortages, including a review into whether properly skilled overseas workers could help fill the gap to avert the immediate crisis.
  • Provision and priority access to tailored mental health support for families, especially those having to cover care staff shortages.
  • A review into the complex care workforce and implementation of a new national framework for care staff recruitment, pay, training and retention.
  • Making it an enforceable legal requirement for care providers to have contingency plans to provide cover when necessary and support them with the funding and tools to achieve this.
  • Active engagement with parents to explore different and more creative models of care provision.
  • Support the Disabled Children’s Partnership call to close the £2.1bn funding gap for disabled children’s health and social care and for local councils to invest in the health and care services disabled children and families are entitled to as they set budgets by April 2022.

“When the staff go off sick or where they have pulled out (for various reasons) we are left with nothing so if we don’t cover them who will?”

Survey response from a parent carer

The Care Crisis in the news

WellChild News WellChild calls for urgent ‘new deal’ for exhausted families with seriously ill children .

Sky News Sky News reports on WellChild's findings on the impact of cuts to care support.