Even the milkman and those of us who love our beds are likely to be awake at midnight on New Year’s Eve to see in the start of 2018. The promise of fresh starts and renewal, possibly a night of celebration with family and friends or Jools Holland on the TV is enough to keep most of us up past midnight. What will you be doing at midnight this year? Will it be an unusually late night for you?
Witnessing the change of days is not an unusual event for many of the parents and carers supported by WellChild, the charity I’m CEO of. Parents caring for a seriously ill child often have to stay awake through the night, monitoring their child to ensure they are safe and well.
Midnight vigils, staying awake to monitor the equipment which tells them that the complex needs of their child are being met, or setting the alarm every few hours to administer feeds and medicines can be a nightly occurrence. Several days and nights without any sleep is not unusual.
As Sophie’s mum, Leanne, explains here, waking up throughout the night for feeds or when alarms go off on Sophie’s ventilator often falls to her or her husband when night-time carers are not available.
Every parent will look back, and probably not fondly, on interrupted nights feeding and changing a hungry, newborn baby. Hopefully, after a while, normality resumes and once more you can appreciate the joys of a full night’s sleep.
There’s no end in sight for parents like Leanne and others our WellChild Nurses support. WellChild Nurses work to get seriously ill children out of hospital and back home with their families with the support they need as quickly as possible so they can enjoy being together like other families. Once home, and even with support from carers and other professionals, the 24/7 needs of these children are relentless. The role of the WellChild Nurse includes them staying in touch so parents can continue to rely on their expert guidance, and practical and emotional support.
Time to rest and recover their strength; time with other children and to be a mum and dad and not a carer is a scarce resource. Some don’t have the care packages they need and even when the authorities have decided they warrant support, things don’t always run to plan as carers are seldom replaced when ill or agencies can’t find suitable staff. Supplies of Red Bull and coffee can only go so far.
None of these parents begrudge undergoing the torture of sleep deprivation, night after night, and cheerfully head into the daily grind, be it work or everyday parenting alongside the inevitable complex medical procedures.
And what happens if the alarms or other signs show that your child is becoming ill? Children with exceptional health needs can become dangerously ill very quickly just like tiny babies. Sleep-deprived parents have to make the right call on what to do next. Who is best to call? Who is likely to be available out of hours? Do you rush to hospital where the staff in A&E might know less about how to manage your child’s complex needs than you do? What happens to the rest of the family while all this is going on? What are the risks if you wait any longer?
Last January WellChild published a study by Mark Whiting, who is the world’s first WellChild Professor of Community Children’s Nursing. In ‘Caring for Children ’24-7: the experience of WellChild Nurses and the families for whom they are providing care and support’ Mark explored parent’s experiences of managing care for children with complex care needs throughout the 24-hour day.
This showed how out of hours care differed dramatically from place to place in the UK because data isn’t collected to help the NHS plan services effectively. On the bright side the simple intervention of a WellChild Nurse can be transformational in empowering and supporting parents to become experts in their child’s care and have confidence in their own decisions. The study explained how parents were able to avoid using out of hours services by planning ahead for possible emergencies and simply by chatting things through with their WellChild Nurse, which gave them much-needed reassurance.
When you first come home from hospital you are petrified and having your WellChild Nurse on the end of the phone makes a massive difference.
My WellChild Nurse always says to me right from the very beginning, if you desperately need me, any time of day, phone.
WellChild’s New Years Resolution for 2018 is to bring the needs of this too often forgotten group of families firmly into the public spotlight. Whatever you are doing this New Year’s Eve, and in the nights to follow, spare a thought for our night owl parents and carers. You can say a friendly hello at midnight by sharing a #midnightselfie on Twitter, Instagram or Facebook.
Show us whether midnight finds you at home in your PJs, at a party or on a nightshift at work and show solidarity with these parents. So here’s to a Happy New Year to you and everyone awake through the night.
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.