Charity establishing nurse role for medically complex children

The Roald Dahl’s Marvellous Children’s Charity is investing in the ‘children with medical complexity’ (CMC) nurse specialist role.

“Caring for children with medical complexity presents unique challenges”

Michelle Kukielka

It has created eight new CMC clinical nurse specialist (CNS) posts, each based at a different hospital across the UK, with four starting this year and the other four starting next year.

Under the Roald Dahl nurse programme, the charity funds the post for the first two years and then the employer must continue to fund it for at least another three years.

After the five years, the employers usually keep the nurses because they have seen the benefits, explained Michelle Kukielka, associate director of programmes at the charity.

The new CMC nurses will join a network of more than 200 Roald Dahl nurses across the UK who cover a variety of specialisms including epilepsy, rare diseases, sickle cell anaemia and thalassemia and neuromuscular conditions.

Ms Kukielka said the charity’s decision to focus on the field of CMC was partly following feedback from its epilepsy nurses about the number of complex patients joining their caseloads.

At the same time, Ms Kukielka, a former nurse and midwife, was conducting scoping research to find out where the “gaps” were in children’s healthcare.

After identifying CMC as a potential area that needed focus, Ms Kukielka wrote to every children’s tertiary hospital in the UK to find out their current practices for CMC and whether a specialist nurse post would be of interest to them.

“What became really clear was that while there were a handful of hospitals that had nurses who were looking after this cohort of children, they were all called something different,” she told Nursing Times.

“There was no consistency, there is no framework for their CPD, there’s no infrastructure to support them.

“And they all said, ‘yes, we would definitely be interested in applying for one of those posts’. And so, we felt this is where we’ll go.”

The charity received requests from 80 different hospitals for an application pack for the new CMC posts and 22 actual applications.

Ms Kukielka said these figures showed “there’s a need” and so the charity would maintain a focus on CMC nursing in the coming years.

In addition, the charity is creating a CMC nurse network for both new and existing nurses working in this kind of role.

When asked if the charity was essentially establishing a CMC as nursing specialism, Ms Kukielka said “absolutely”.

The health inequalities faced by children with medical complexities was the theme of Roald Dahl’s Marvellous Children’s Charity’s most recent nursing conference, which took place last week.

During a panel session, Ms Kukielka explained that CMC “describes those children who are under the care of multiple medical specialties”.

She said there was no consistent terminology in use in the UK for this group of children, but the charity was adopting CMC to align with the US, Canada and Australia.

She added: “Caring for children with medical complexity presents unique challenges due to their complex and often interrelated medical, social and emotional needs.”

Among the panel was Emily Foster, Roald Dahl CMC nurse specialist at Evelina London Children’s Hospital.

Ms Foster works exclusively with children who are in hospital for long periods of time, up to years. She was asked during the panel to explain the nursing interventions that benefit these families most.

“I’m really honoured to share the journey through hospital with the families”

Emily Foster

She said: “These patients will have a multitude of health professionals and medical specialties involved in that day to day care in the hospital environments.

“And families have fed back to me historically and still sometimes now that care can feel overwhelming and sometimes fragmented.

“They have this like pressure to remember everything and they have this like innate fear that something’s going to slip through the net.

“And so what we try to do, and certainly what I try to do as a CNS in this role, is to act as that care co-ordinator; to try my best to streamline and bring the healthcare team together.

“But to also act as that kind of conduit or that linchpin between the family and the healthcare team as well.”

Ensuring continuity for families was something Ms Foster said she was “passionate about”, and this was something the CNS role could provide as they tended to stay with families throughout their healthcare journeys.

“I’m really honoured to share the journey through hospital with the families,” she said.

“I think there’s a lot of strength in having that one person or a small group of people who have short of shared those ups and downs and really get it from that moment of referral almost through to discharge and then back out into the community.”

Another key role for the CNS was advocating for shared decision making between families and medical teams and making sure medical information was provided to families in an accessible and consistent way, explained Ms Foster.

In addition, Ms Foster said helping families with “basic practical support” like advice on car parking made a big difference.