EACH has launched a campaign, calling on the government to create a ring-fenced £434 million grant for local councils, that could fund short breaks for seriously ill and disabled children.
A St Neots family has laid bare the necessity for short break care by telling their ‘heart-breaking’ isolation story.
Claire Reece along with a group of Cambridgeshire parents have talked about the significant struggles they have faced looking after a vulnerable child during lockdown and issued an urgent plea for support as they fear a reintroduction of restrictions “will leave families already at breaking point unable to manage”.
Two weeks ago, East Anglia’s Children’s Hospices (EACH) joined children’s hospices across the country in calling on the Government to create a ring-fenced £434 million grant for local councils that could fund short breaks for seriously ill and disabled children. The campaign came as new research estimated more than one in 10 (11 per cent) parents of children who need short breaks delivered by children’s palliative care providers, like EACH, would experience significantly less stress and improved mental and physical health if they could access them.
In a letter to EACH chief executive Phil Gormley, MPs, local authorities and health bodies, five families supported by EACH have painted a vivid picture of their time in lockdown and why they are fearful of what the future holds.
Claire Reece, who lives with her five children in St Neots, says the last six months have been “scary, upsetting and extremely worrying”.
Her son, Hugo, 11, has CHARGE syndrome, resulting in extensive medical and physical difficulties.
Claire said: “It is completely unacceptable that parents like us and our fellow friends are being left to care for children who are medically fragile and have significant care needs, with little or no support.
This is unethical, but also soul-destroying. The impact this is having on families is profound.”
Mr Gormley, said: “It was heart-breaking to read the impact on these families of self-isolation, the loss of short break support and an already fragile system collapsing”.
“The short breaks we provide are a lifeline for life-threatened children and families across our region.
“Parents tell us how important they are to help them recharge their batteries and spend time just being mum and dad, not only to their seriously ill child who may need 24/7 care, but also to the well siblings who can feel forgotten and neglected.
“The extending pressure of the pandemic means these breaks are now more important than ever.”
For more information about EACH, including how you can help raise funds, visit www.each.org.uk or call us on 01223 800 800.