More than 50,000 children in the UK are expected to have short lives and many are being robbed of the support they deserve.
According to the charity Together for Short Lives, there’s a serious shortage of nurses working in children’s hospices or specialising in palliative care.
Two thirds of voluntary services surveyed by the charity reported that a shortage in nurses is resulting in a reduced offer of care to families, with beds closing, respite hours being reduced and continuity of care suffering.
To encourage more nurses to work in the sector, the charity recently launched its ‘You Can Be That Nurse’ campaign, showcasing the valuable work of children’s nurses and the difference they make to families in need.
Barbara Gelb, CEO of Together for Short Lives, believes the shortage of nurses is only going to get worse unless the next generation consider palliative care as a career.
“The number of children who may need palliative care is rising, yet children’s palliative care is facing a shortage of qualified nurses to provide care and support for this most vulnerable group of people,” she says.
“It’s worrying that over a quarter of nurses at voluntary sector children’s palliative care providers are over 50 years, with many able to retire at 55. It’s vital we increase the number of qualified children’s palliative care nurses to bridge this care gap and future-proof care provision for seriously ill children and families.”
Liz and her husband Chad know first-hand how much difference the help of a qualified nurse can make.
Their son, six-year-old Logan, suffers from a range of debilitating conditions including severe cerebral palsy, epilepsy and secondary microcephaly. He’s also registered blind, needs a tracheostomy to support his breathing, and is nil-by-mouth due to an unsafe swallow, so has to be fed through a feeding device called a gastrostomy
He’s on a complex mix of medications to reduce pain and seizures and requires 24/7 care.
Liz is at home on her own most of the time caring for Logan, as her husband works long hours and it’s not safe to take Logan out in the car with just one adult.
The couple also have two other children, Jude (two) and Tabitha (six months) and rely on the support of staff at Charlton Farm Children’s Hospice.
“A life without this support would be even more isolating than it already is,” Liz says.
“If we didn’t have regular out of the home respite, it would be difficult because it’s really something to look forward to.
“It’s always a goal, it’s something on the calendar that’s ‘oh - it’s only two weeks until we go’. Knowing that they’re only a phone call away or able to pop out to us at home or in hospital is invaluable.”
At the hospice, the family are able to play games and make happy memories, while Logan’s nurse, Amanda, is on hand to help with his complex health needs.
Liz says having a regular nurse who’s the same every visit takes away some of the pressure she faces day-to-day.
“Having the support of nurses like Amanda means that I’m not having to explain what Logan’s needs are every time we visit or every time they visit us, they know his history, they know the implications of his conditions and what goes into their management,” she says.
“It’s someone that you can trust implicitly without having to keep pushing for things to be done the way you need to have them done, because they understand that the routine is in place for a reason and how important it is and they stick to it.
“Parents can’t switch off if there is even the slightest thought that something isn’t quite right, nurses like Amanda strive to make sure everything is just as it should be because they understand how very important it is for us to be able to hand over, even just for a little while, and have a chance to breathe.”
Over time, Logan has developed scoliosis (curvature of the spine) and dislocated both of his hips due to complications relating to his illnesses.
Understandably, seeing Logan in pain has been hugely traumatic for Liz and Chad, but the mum says the support of hospice staff has made a huge amount of difference to their mental health.
“I don’t think we’d have coped as well with everything we’ve had to put up with in the last few years without the support of the nurses and the care team at the hospice,” she says.
“They are here for us whenever we need them and they can always answer or get the answers to any questions we’ve got.
“They support us in finding out what we need to find out, to make his life more comfortable and improve how we live our day-to-day.”
Working as any type of nurse can be hugely rewarding, but Amanda says getting to know families like Liz’s and work with them long-term makes children’s palliative care even more special.
”It’s really hard to explain, but it’s just an amazing experience,” she says.
“Some of these families you’ve known for a really long time, and for me, to be there for that child and be there for that family makes me want to do my job even more.”
Despite nurses like Amanda being vocal about the benefits of working in children’s hospices, there’s still a national shortage of workers applying for these positions.
Around 10% of nurse positions in the children’s palliative care voluntary sector are unfilled, compared to 7% of job vacancies for regular NHS nurses.
If this shortage increases, families like Liz’s may no longer be able to access the help they need.
If you’re interested in a job in children’s palliative care, you can browse current vacancies via the Together for Short Lives jobs page.
Liz says that the reality of working in a children’s hospice is often very different from how people expect it to be.
“They don’t see the full picture of what palliative care for children is, they only see the end part and they don’t understand that the path up to that end point can be so much fun and enjoyable and the relationships you build with everyone - you become part of someone’s family and it’s really, really important,” she says.
“The time up to the end part, and the time after it, is just as valuable and the difference that the right support makes to that journey is immeasurable.”