Re: Cerebral palsy in adults: summary of NICE guidance
With respect to feeding problems, the NICE guidance on Cerebral palsy (CP) in adults (1,2) lacks the detail of a previous guideline (3) that covered patients with CP under the age of 25. However, neither guideline recognizes the increasing cohort of young people with very severe CP and other complex co-morbidities who have such severe feeding problems that they are entirely dependent on enteral tube feeding as they approach transition to adult services.
Many of these unfortunate young people have co-existing swallowing problems and are unable to protect their airway. They may have had fundoplication surgery as children and increasingly may have progressed from continuous pump gastrostomy feeds to feeding via a gastro-jejunal device. With time, their underlying gut dysmotility will deteriorate and this often occurs at the same time as their kyphoscoliosis has evolved. This combination can make effective enteral feeding increasingly challenging and in some patients leads to intestinal failure.
This new problem is covered briefly in the NICE guideline on Gastro-oesophageal reflux disease in children (4) but I am concerned that insufficient attention is being directed by clinicians, commissioners and the NHS toward this increasing clinical and ethical dilemma.
1 BMJ 2019;364:l806
2 Cerebral palsy in adults. NICE guideline NG119 (2019)
3 Cerebral palsy in under 25s: assessment and management. NICE guideline NG62 (2017)
4 Gastro-oesophageal reflux disease in children and young people:diagnosis and management. NICE NG1 (2015)
Competing interests: I chaired NICE NG1 2015