“Children and young people with a neurodisability should have the right to receive the same high quality healthcare as anyone else,” National Confidential Enquiry into Patient Outcome and Death (NCEPOD) Chair Professor Lesley Regan commented on the launch today of Each and Every Need, a review of the care received by 0-25 year olds with a neurodisabling condition.
The report from NCEPOD, in collaboration with a team from Cardiff University, charts inconsistent and variable codes used in documents that record a cerebral palsy and the failure to log the cerebral palsy each time the patient attends the NHS for treatment.
Rigorous diagnosis of a cerebral palsy must also include ready access to MRI scanning and expert reporting, alongside accurate description of the degree and type of movement disorder and associated problems each patient has. Many children and young people with a neurodisabling condition will survive into adult life, which means that many adult survivors will have additional, complex long-term care needs such as epilepsy or reduced communication skills.
The report makes recommendations that highlight, for example, the need for improvements to multidisciplinary team working, to smooth the interface between services and the transition between paediatric and adult services. Children and young people receive treatment for their neurodisabling conditions in a number of different healthcare settings, which includes emergency departments, acute wards, critical care units and outpatient clinics. This may occur across a complex mix of different organisations that can be difficult to co-ordinate and manage.
“There is no easy solution to the problem of care leadership in adult life for patients with a cerebral palsy but the re-organisation of primary care services into larger networks offers an opportunity to bridge the gap in neurodisability services for young people,” Professor Regan concluded.
The full report can be viewed here.