20/11/2017 15:09 GMT | Updated 20/11/2017 15:09 GMT

Looming Crisis For UK's Most Seriously Ill Children

For most of us reflecting on our childhood, the memories, be they good or bad, will centre on the home and family. Surely every child in the UK today can rely on a basic right to live together with their family at home and go to school with their friends?

Yet as CEO of WellChild, a charity which provides nursing and other support to families of children and young people with medically complex needs, I have learned that many are denied this right, forced to spend months, sometimes years, in hospital simply because there is no support enabling them to leave.

Worse still the situation seems to be getting more acute and I believe a crisis is looming. In the past year we have seen a dramatic 37% increase in the average caseload of our WellChild Nurses who support families so they have what they need to bring their children home safely from hospital. A full copy of WellChild’s latest Impact Report can be found here.

Even when families are together at home their ability to access the round the clock care they need to keep their children safe and prevent unnecessary hospital readmissions is constantly challenged by inconsistent and inadequate levels of support. However, despite our nationwide nursing team growing rapidly from three nurses eleven years ago to 35 now, there are many families still without the support they so desperately need.

Listen to what parents are telling WellChild they would ask for to improve their child’s care at home

They tell us about momentous daily challenges - sleep deprivation; complex medical procedures and medication regimes, navigating convoluted health and social care systems to fight for everything their child needs. But they are desperately keen to keep their children at home where possible. Give them adequate healthcare resources, training, and emotional support, and they are more than equal to the challenge.

This is how Noah’s mum, Jill, manages when night-time care lets her down.

Caring for a child in hospital is costly both financially and in the high emotional toll it exerts. Ironically it places a higher financial burden not only on families but also the NHS. In most cases and with the right support, the overall cost to the NHS drops dramatically when a child is cared for in the community. More importantly children do better medically and developmentally at home.

The success stories from our WellChild Nurses keep pouring in – children going to school for the first time, spending their first Christmas at home like two-year-old Rogan Millar from Perth. Rogan made it home just days before Christmas 2015 after ten months in hospital. He was born with a rare undiagnosed syndrome which means he is fed by a tube, has a tracheostomy and used to need ventilation. I say ‘used to’ because Rogan has been home for more than 18 months now thanks to his WellChild Nurses and has recently come off the ventilator. His consultant attributes the improvement in his breathing to him being at home, able to run around outside like other toddlers. For this to happen Rogan’s WellChild Nurses trained his parents in managing his tracheostomy, what to do in an emergency and not only made sure the support needed was in place for them to bring him home but continue to check in on the family regularly.

Rogan and WellChild Nurse, Linda McCarthy

I don’t want Rogan to be the exception but I am concerned that circumstances may conspire to prevent other children in his situation being helped in the same way. How many times have you read in the news about failures in adult health and social care leaving vulnerable people without the support they need and yet I doubt you can so easily recall a similar story about a child with serious health needs? With the numbers growing every year due to medical advances, it is time for Government and society to wake up to this impending crisis before it is too late.

This is compounded by not only increasing pressure on NHS and social care budgets but also a nationwide shortage of children’s nurses. Policy-makers and Government must start right now to prioritise and invest in this group of children and young people. We need urgent action to address the current children’s nursing workforce crisis including investment in recruitment, retention and training of children’s nurses and in the Children’s Community Nurse (CCNs) workforce specifically. Amongst the long list of things which families tell us would make a difference to them is greater investment in children and young people’s support services, particularly giving them access to short break respite care. These are the things, which give them the strength to keep going as expert carers to their own children.

I can look back on a childhood at home with my family, and thankfully, Rogan will be able to as well. I believe every child in the UK should be building those memories right now, memories which for children with life-limiting conditions, can have even greater value.

About WellChild

WellChild is the national charity for seriously ill children and their families. More than 100,000 children and young people are living across the UK with serious or exceptional health needs. Many spend months, even years in hospital simply because there is no support enabling them to leave. Meanwhile those who are at home face inconsistent and inadequate levels of support.

Through a nationwide network of children’s nurses, home and garden projects and family support services, WellChild exists to give this growing population of children and young people the best possible chance to thrive: safe at home, together with their families.