National brain tumour research funding needs to increase to £30-35 million a year
New report presents the experiences of families caring for a seriously ill child over the last seven months
The Rainbow Trust Children's Charity, who provide emotional and practical support to families who have a child with a life-threatening or terminal illness, have just launched a report entitled “Pandemic Pressures: The struggles and resilience of families caring for a seriously ill child”.
It acknowledges that: “From parenting a critically ill baby at a distance, to maintaining strict shielding as a household for many months, the pandemic has been both challenging and exhausting.”
The report arrives at a number of recommendations which urge decision-makers and commissioners to recognise the value of flexible emotional and practical support – a lifeline for families caring for a seriously ill child in a time of great uncertainty and anxiety.
These range from asking the Secretary of State for Health and Social Care to urgently address the long-standing gap in funding emotional and practical support for families, to calling on NHS England to advise hospitals, dependent on local transmission
rates, to make sure that children and their families are supported to be together when attending appointments or receiving inpatient treatment.
The final recommendation is that the Secretary of State for Education must ensure his department supports schools to respond to individual children’s needs by adapting both learning and pastoral support for children with serious illnesses and their
The report, which can be accessed here, concludes that: “The education of all children has been significantly disrupted in this period. However, we urge the Department for Education to pay attention to the particular needs of this group whose families may be experiencing prolonged stress and anxiety.”
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