NICE New Guidelines for CP Care

Bobath Occupational Therapist, Athena Logothetis has been working with The National Institute of Health Care Excellence (NICE) to produce their first guideline on the assessment and management of cerebral palsy in under 25s.

Athena Logothetis commented to OTNews..."My main concerns for this guideline were to raise awareness of how cerebral palsy and related interventions can impact on function and participation and also to put individuals with cerebral palsy and their families and carers at the centre of the decision making process. Early intervention has an impact on lifelong function; however, it is important to consider function and participation at different stages of life. The guideline covers interventions into young adulthood to emphasise that cerebral palsy is a lifelong condition whilst also placing an emphasis on the importance of early intervention. The guideline has specific sections on visual, sensory and perceptual differences associated with some types of cerebral palsy. This is particularly pertinent to occupational therapy which has traditionally looked at these areas and how they relate to function and participation. Hopefully the guideline will raise awareness of these associated areas to ensure equitable and targeted interventions wherever a service user might reside".  

Last year 192 of 209 CCGs, responding to Action Cerebral Palsy, could not provide details of their care pathways for children and young people with cerebral palsy, whilst a further 14 had specific pathways.

NICE’s new guideline focuses on risk factors and causes of cerebral palsy and how to treat common comorbidities such as saliva control, pain, mental health and communication issues.

Recommendations include:

  • Take into account that parents and familiar carers have a key role in recognising and assessing pain, discomfort and distress in children and young people with cerebral palsy
  • Refer all children with delayed motor milestones to a child development service for further assessment.
  • Review a diagnosis of cerebral palsy if clinical signs or the child’s development do not follow the patterns expected for cerebral palsy, taking into account that the functional and neurological manifestations of
  • cerebral palsy change over time.

Cerebral palsy is the most common cause of physical disability in children and young people in the developed world. In the UK it is estimated that 1 in 400 babies is born with cerebral palsy, with approximately 1,800 children diagnosed each year.

A permanent abnormality of the brain, cerebral palsy is not progressive and affects each individual differently.

Professor Mark Baker, Director of the Centre for Guidelines at NICE, said: “Cerebral palsy is a life changing condition for families but we know the earlier we can identify cerebral palsy the more effective our interventions can be.

This guideline will help drive improvements in the standard of care for people with cerebral palsy across the country and ensure both clinicians and families are aware of common comorbidities to watch out for." Professor Mark Baker

“Following on from this work, NICE is developing a further guideline on the management of cerebral palsy in adults.”

NICE previously published a guideline in 2012 on the management of spasticity in under 19s which included recommendations on managing the motor difficulties of cerebral palsy.

Dr Charlie Fairhurst, consultant in paediatric neurodisability at Evelina London Children’s Hospital and chair of the guideline development group, said: “My main concern coming into this guideline was disparity of care and ensuring there is equitable access to early recognition, intervention and services for all children.

"The two aspects that are reported as being most important for adults living with cerebral palsy are the level of mobility and the level of communication. Mobility was covered in the previous NICE guideline on spasticity, in this guideline we have discussed issues about communication, amongst many other aspects of recognition and management.”

Action Cerebral Palsy’s report also found that a lack of awareness of how to access specialist support was leading to late diagnosis and missed opportunities for effective early interventions.

Dr Neil Wimalasundera, consultant in paediatric neurodisability at Great Ormond Street Hospital and member of the guideline development group, said: “My hope is this guideline will help improve the actual diagnosis of cerebral palsy and reduce variation in clinical practice across the country. Historically patients haven’t been routinely offered MRIs to confirm diagnosis when the cause of cerebral palsy is not clear – this guideline will help guide appropriate investigations when needed.

Getting the diagnosis of cerebral palsy correct and recognising red flags for other conditions is essential. Delays in diagnosis can mean potential treatments may be delayed or missed altogether.” Dr Neil Wimalasundera.