Children with medical complexity (CMC) live with congenital or acquired multi-system diseases, severe neurologic conditions with marked functional impairment, and/or are technology dependent for activities of daily living.1
These children often face a daily reality that is incom- prehensible to most of us: the inability to walk, talk, eat, or take part in typical childhood activities, coupled with the frightening prospect of life-limiting diagnoses.
The CMC Care Gap
Medical advances mean that these children are living longer; presenting the complex challenge, for their families and healthcare providers, of how best to achieve a quality of life that goes beyond mere survival.
The NHS is built on an acute care system, which results in fragmented care. This is wholly unsuitable for children with medical complexity who require coordinated, multifaceted care that unites diverse medical specialisms and therapies.
Navigating the healthcare system as it stands is a complicated and exhausting endeavour for these families. As one parent told us, “I’m not just a mum looking after a child, I have to be a doctor, a nurse, a physiotherapist, every person… It’s a constant battle for the right care.”
The reality for these families is a constant cycle of re- explaining their child’s complex medical history to an ever- changing roster of consultants and healthcare professionals, alongside frequent frustrating trips to emergency departments and conflicting appointments.
What Would ‘Best Practice’ Look Like?
Parents of children with medical complexity need stable, long-lasting relationships with healthcare professionals, providing consistency, reassurance and a joined-up holistic approach. Done well, care should be coordinated by a specialist with expert knowledge of the child and their condition, as well as advanced communication skills to liaise with the many teams involved. They should also have an awareness of the family, including aspects of their social situation, be it financial, housing or knowledge of their educational needs.
In 2023, Roald Dahl’s Marvellous Children’s Charity took the pioneering step of launching a programme to establish dedicated Roald Dahl CMC Nurses to improve the care for children with medical complexity and their families.
Roald Dahl Nurse Specialists are ideally positioned to meet the care gap, as their knowledge of child and family goes hand-in-hand with professional relationships, multi-agency working, sourcing equipment, and managing medication, all of which facilitates consistent and effective continuity of care for the patient.
