Patients with cerebral palsy are being failed on multiple levels

BMJ 2018; 360 doi: (Published 09 March 2018) Cite this as: BMJ 2018;360:k1134
  1. Jacqui Thornton
  1. London

The care of young people with a cerebral palsy is being hampered by inconsistent coding, poor transition from paediatric to adult services, and “inadequate” multidisciplinary teamworking, a report has found.1

The report, by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD), paints a picture of children and young people receiving treatment in a number of different healthcare settings, including emergency departments, acute wards, critical care units, and outpatient clinics, often across a mix of different organisations that can be difficult to coordinate and manage.

It found inconsistent codes used in documents that record a cerebral palsy, and failure to log the cerebral palsy each time the patient attended the NHS for treatment.

Multidisciplinary team working, which is key for this patient group with complex needs, was viewed as inadequate for 137 out of 285 (48.1%) inpatients from the cases reviewed.

The report was commissioned by the Healthcare Quality Improvement Partnership and involved a study of 500 case note reviews and analysis of national datasets and surveys. It was produced in collaboration with Cardiff University.

It follows a 2013 report from the Royal College of Paediatrics and Child Health2 which showed that two thirds of children who died in England, Scotland, or Wales had a chronic condition, with between 30% and 40% affected by a neurological or sensory condition.

The latest report said that, as many children and young people with a neurodisabling condition are living longer, many adults will have additional, complex long term care needs, such as epilepsy, or reduced communication skills.

However, there was uncertainty over how and when transition from paediatric to adult services happened, and it was “hardly ever the case” that the services were equivalent.

“The gap that opens up poses challenges for patients and their families as well as health and social care providers, with a large burden of complex healthcare falling to GPs,” said the report.

It found that clinical care needs to improve, including the recognition and management of aspects such as pain, learning disability, emotional and mental health, and support needs.

Principal recommendations include better coding, expert assessment of patients suspected of a cerebral palsy, access to an appropriate multidisciplinary team, and transition coordinated by the lead clinicians and integrated within health education, social care planning, and mental healthcare services.

NCEPOD chair Lesley Regan said: “Children and young people with a neurodisability should have the right to the same high quality healthcare as anyone else.

“There is no easy solution to the problem of care leadership in adult life for patients with a cerebral palsy but the reorganisation of primary care services into larger networks offers an opportunity to bridge the gap in neurodisability services for young people.”

Kathy Wilkinson, clinical co-ordinator at NCEPOD and consultant in paediatric anaesthesia at the Norfolk and Norwich University Hospital NHS Trust, was one of the authors of the report. She said: “It’s important to grasp that we have made 35 recommendations spanning the whole care pathway, involving paediatrics, medicine, surgery, primary care, and community care. There’s not just one big recommendation.”

Wilkinson added that while the report was being prepared, NICE published a new guideline3 on assessment and management of people aged under 25 with cerebral palsies.

“This report should be seen as complementary. We have some additional findings, and the two together should be helpful to professionals working with this group of patients.”

Jo Martin, president of the Royal College of Pathologists, said the report acknowledged that while there are areas of good practice in the care and treatment of these patients, there is room for improvement.

She added: “Children and young people with cerebral palsy are far more likely to die early. The death rate for those with cerebral palsy aged 0 to 25 years is 26 times higher than those without the condition; with the highest rates of deaths among the under fives.

“It is essential that we investigate all deaths of children and young people, including those with cerebral palsy, to see if we can learn from the causes of death to help improve care and treatment for the living.”


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