Kerstin Kubiak writes about the first NICE guideline on cerebral palsy which aims to improve the diagnosis and treatment of cerebral palsy across the country.
I am delighted to read about the new guideline for the diagnosis and management of cerebral palsy, which is the first of its kind in the UK. The guideline’s stated aims are to provide all children and young adults affected by cerebral palsy, with the care that is needed to ensure they are as active and independent as possible.
Cerebral palsy is an umbrella term used to describe disorders of movement as a result of brain damage which occurs around the time of birth. Cerebral palsy is reported to be the most common cause of physical disability in children and young people in the developed world. In the UK around 1 in 400 babies are born with cerebral palsy. There are different types of cerebral palsy, depending on where the brain is damaged and the severity of the damage.
The new guidelines for the diagnosis and management of cerebral palsy were published in January by NICE, the National Institute for Health and Care Excellence. The guideline focuses, in particular, on diagnosing, assessing and managing cerebral palsy in children and young people from birth up to their 25th birthday.
It is recognised that the earlier a child can be diagnosed with cerebral palsy, the earlier they can receive additional support and the more effective this can be.
Regarding diagnosing cerebral palsy, the guideline recommends that any child with unusual fidgety movements, floppiness or stiffness should be referred for an urgent assessment. Similarly, children who are not meeting their developmental milestones for movement, such as being able to sit by 8 months or walk by 18 months, should be assessed for cerebral palsy.
Once cerebral palsy is diagnosed, the guideline contains advice on the management of challenges that may arise, including challenges with saliva control, eating, drinking, talking and coping with pain. The guidelines recognise the key role of parents and carers in assessing if their child is in pain, discomfort and distress.
The aim of the guideline is to ensure that every baby, child and young adult affected by cerebral palsy receives the best possible care so that they can be as active and independent as possible, and that this is achieved consistently across the country.
Professor Baker, Director of the Centre for Guidelines at NICE, puts it succinctly: “This guideline will help drive improvements in the standard of care for people with cerebral palsy across the country”.
Dr Wimalasundera, a specialist in children with brain injury at Great Ormond Street Hospital, said: “My hope is this guideline will help improve the diagnosis of cerebral palsy and reduce variation in clinical practice.”
As a solicitor working with families affected by cerebral palsy, I consider this new guideline to be an important step forward for children and their families affected by this life changing condition, and hope that there will be appropriate support so that these guidelines can be widely implemented.
I am also delighted to see that NICE have started work on further guidelines for the management of adults with cerebral palsy. The aim is again to provide consistent and clear pathways of care, this time beyond childhood, which is vital for this complex and lifelong condition and I will also follow this with interest.