Statement from WellChild on BBC News report into problems with continuing care

Amy Mitchell, Director of Programmes for WellChild, the national charity for seriously ill children and their families, said:   

“Thousands of families up and down the country will join WellChild in thanking the BBC for shining a light on the increasing challenges they are facing with securing ongoing care for children and young people with complex, long-term health needs. 

“Mostly hidden behind closed doors, parents are stoically providing expert medical care to keep their children safe at the same time as being mum or dad. All too often the daily challenges they face can leave them too busy or too exhausted to speak out for change. 

“As the national charity for seriously ill children, young people and their families, WellChild exists to ensure they are not forgotten. Advances in medicine and medical practices mean their numbers are growing with estimates at more than 100,000 across the UK but funding is not keeping pace.  

“At WellChild, through our network of specialist children’s nurses, training and information to give parents and carers skills and confidence and our online support community, we are hearing increasingly concerning stories of failures leaving families on their knees and children at risk of returning to hospital or worse.  

“We urgently need the government to step up to help meet these families’ needs and give every child with serious health needs the best chance to thrive – properly supported at home with their families. 

“Families are telling us that;  

•   whilst they understood why support shrank dramatically during the Covid pandemic, the number of care hours they receive has still not returned to pre-Covid levels, with some families now left with no help at all.   
• because the hours of caring and undertaking complex medical procedures takes place in their homes, their efforts and problems remain hidden and not properly acknowledged. 
•  their children stop receiving the healthcare they need when they survive into adulthood because the adult services don’t provide the same support. 

To make matters worse problems with recruitment and retention of carers can result in families being left without carers even when they have been told they are entitled to this help.  

“We hope that Government and NHS decision-makers will start to listen and will work together and with the voluntary and healthcare sectors to finally crack these issues to ensure that more families are getting the support they need to enable them to care for their child or young person at home.”