New figures released today by the children’s palliative care charity Together for Short Lives as part of Children’s Hospice Week show that for 88% of people a good night’s sleep is really important.
But for parents of life-limited children, sleep is a luxury and nights are often spent anxiously caring for their child, waking for medical routines or reacting to symptoms including seizures and sleep apnoea.
Kelly, whose daughter, Willow, suffers from central hypoventilation, said: “Willow is connected to a ventilator 24 hours day and her condition can worsen during the night. Two nurses care for Willow between 10pm and 8am, six days a week, but we still find it really hard to relax and will comfort her through the night.”
Lack of sleep can impact on many areas of life, 70% of people surveyed said that lack of sleep affected their mood, 42% said it impacted on their health and 29% said it affected their relationship.
Most parents can remember the sleepless nights looking after a newborn, but many children with life-limiting conditions never experience a good night’s sleep and for their parents, lack of sleep can put the whole family under immense pressure.
Children’s hospices and palliative care services are there to provide a vital lifeline to families. Tŷ Hafan offers a wide range of palliative care services including short break care, outreach support in the in the home and hospital and activity days for siblings.
For many families, a short break at a hospice might mean the only time they are able to get a proper night’s sleep. It gives them the time to relax as a family, with expert support day and night, and spend time together making precious memories.
Willow, receives short break care at Tŷ Hafan, which allows Kelly and Damien to have a much-needed rest. “She loves it when she stays,” said Damien. “She has her own patio with a sea view. Her room is decorated all pink and girly and she loves the star lamps at night.”
“Tŷ Hafan has helped take away our stresses,” said Kelly. “Having that break helps us cope so we can carry on with the next few months. We don’t realise how stressed we’ve been until we’ve had that rest.”
“We have total confidence in their ability to manage any situations that may arise in the night so have learnt to make the most of every second of sleep we can grab whilst she is there. It's a lifeline in enabling us to carry on giving Willow the care she needs. To get a few consecutive nights sleep is utter luxury!”
Tŷ Hafan needs to raise £3.7m each year to provide its services to life-limited children, young people and their families from across Wales.