Amanda Richardson looks at the role recent NICE guidelines can play in early diagnosis and intervention for CP
It is estimated that three babies in every 1,000 is born with cerebral palsy, making it the most common motor disability in childhood, but is enough being done to enable the full potential of these children in their later lives?
Cerebral palsy is an umbrella term for a group of motor disorders which make up the most common type of motor disability in childhood. The condition is thought to be caused by damage to the developing brain occurring before, during or immediately after birth. Whilst the initial damage to the brain will not get worse, the effect of this damage – depending on which part of the brain has been affected and the severity of the damage – will cause difficulties primarily with the control of movement and posture, mobility and sensory processing, as well as communication, learning, social and self-care skills. The condition can also change as a child progresses into adulthood; for example, 25 per cent of people with cerebral palsy who can walk as children will lose this ability as they get older – a lesser known fact about the condition that brings to life what it means.
So it comes as no surprise that NICE has introduced two key documents for people with cerebral palsy over the last year – the guideline Cerebral palsy in under 25s: assessment and management and the Quality Standard Cerebral palsy in children and young people – the aims of which are to provide guidance on best practice around diagnosis, assessment and management of cerebral palsy in children and young people, and highlight key areas of improvement for the NHS.
Indicators of cerebral palsy
Health and social care professionals and parents and carers of children and young people with cerebral palsy must all be well-versed on the risk factors for a child developing cerebral palsy – prematurity, low birth weight and maternal infection to name a few – and some of the red flags for the condition, such as not sitting by eight months, not walking by 18 months and early asymmetry of hand function. The guideline does an excellent job of emphasising the possibility for these to be some of the key points at the centre of education on cerebral palsy for health and education professionals.
Both documents are critical and have the potential to trigger a fundamental and much-needed change in how we approach the diagnosis and management of cerebral palsy. But the Quality Standard highlighting priority areas of improvement is where I hope to see some of the most impactful change.
Too little support
Let’s start with a bit of background on the current state of play: currently, there is too much local variation in levels of care available to children with cerebral palsy and their families. In fact, a report issued by UK charity Action Cerebral Palsy in 2016, Variations in Care: An analysis of cerebral palsy provision, revealed that much more needs to be done to support children and young people with cerebral palsy, particularly during their first 24 months when intervention is most effective but also most likely to be lacking. The biggest recurring issue was said to be “insufficient specialist support and a lack of awareness from health professionals as to how to access it.” To put this into context, only 16.7 per cent of clinical commissioning groups contacted by the charity were able to provide a specific timescale for referral for a diagnosis of cerebral palsy from the point of the formal identification of symptoms. This is a concerning statistic, to say the least.
Pathways to care
The NICE Quality Standard emphasises one of the key components in establishing a national standard of care pathways for children – to create a clear pathway of screening and enhanced surveillance programme, to be carried out by neonatal and developmental services for children displaying any of the major risk factors of cerebral palsy. This will ensure early diagnosis and consequently early, effective intervention, both of which hugely inform prognosis and a child’s future.
Moreover, a monitoring and resource booklet, or as the Quality Standard refers to it, a “personal folder”, should be issued to all children and young people with cerebral palsy. This personal folder should provide information on the child or young person with cerebral palsy, to enable health, social care and education providers to understand more about them and enhance their care. It would also facilitate a detailed record of progress and development maintained by parents and professionals to inform and monitor further assessment and intervention.
During the process of and after diagnosis, the booklet would provide a record of the child’s history and medical interventions, minimising the need for parents to repeat information for multiple audiences and facilitating effective inter-agency communication. It would be used to record the strategies and goals which have been developed in partnership with parents and children for the various interventions to improve their quality of life, and record and monitor the management plan.
This is a key component to ensuring that children at risk of developing cerebral palsy are appropriately monitored at the earliest possible point and at all stages of their development. The Quality Standard more broadly establishes clear recommendations for sufficient training to ensure that education and healthcare workers who encounter children at risk of cerebral palsy have increased awareness of the signs of the condition, and have the ability to implement best practice guidance by way of integrated health and educational pathways. But why is early identification and intervention so important?
Quite simply, early identification followed by appropriate and timely intervention is essential to ensure the best outcomes for children with cerebral palsy, as their brains are at their most malleable during their first two to three years of life and so can benefit most from intervention. Therapies such as physiotherapy, speech and language therapy and occupational therapy undertaken in the early years have been shown to contribute significantly to infants’ physical, cognitive, social and emotional development.
The story of Hana, who was born three weeks early, is testament to this. Despite being given the all clear at birth, by eight months old Hana still wasn’t sitting up unsupported, and her concerned parents took her to the GP, expecting a dismissal and instructions to “stop being over anxious” because children develop at different rates. However, Hana’s GP was experienced with symptoms of cerebral palsy and immediately referred her to a specialist centre, following which a range of tests were carried out. Although brain damage couldn’t be identified, Hana’s parents were told her symptoms were parallel to those of cerebral palsy, and the parents immediately set to securing Hana the therapies she needed. They spent months on various waiting lists, travelling across the country to navigate what they described as the “daunting processes involved with having a child with special needs”, but they never felt they received the support they needed.
It was only after identifying a special school in their local area which specialised in helping children with sensory and motor issues that they felt they were finally receiving the attention and intervention Hana needed. The school was described as a “one-stop shop” where all of Hana’s needs were being addressed in one place in immense detail, including communication, sensory, OT and physiotherapy needs. A programme tailored to her specific needs was developed. Hana’s parents said:
“When she started at school she was barely able to pick anything up, she could just about roll over. She was immobile. She had some eye contact. With all the intensive therapies Hana has now undergone, she is a different child. Although still nonverbal, she is able to vocalise and makes herself heard. She loves human interactions and recognises familiar people. She has started to use a tactile on-body signing system for communication and she is able to use a walker with support. She is able to feed herself finger food and can drink water independently using a beaker. She can pick up her toys and play with them and also sit unsupported on a stool for hours. She has a cheeky and stubborn personality and it shines through. She has an infectious giggle that can cheer up anyone in the room. Without all this input we have no doubt in our minds that Hana would not have progressed to the level she has. She truly is working towards fulfilling her potential. If Hana carries on making the progress that she has done for the last ten years, we are so very hopeful and excited for the future.”
Hana’s story should be the story of every single child and young person with cerebral palsy, and is clear evidence as to why we need to remove the current barriers that hinder local services from identifying cerebral palsy and intervening quickly. The NICE guideline and Quality Standard can go a long way in kickstarting this process.
But there is, of course, a catch, and we mustn’t forget that there is no legal obligation for health organisations to adhere to NICE standards. The benefits that they can bring for children and young people with cerebral palsy are evident, but these are unfortunately wholly dependent on clinical commissioning groups, trusts and local authorities’ willingness to implement them. I urge health organisations to follow these recommendations and help improve the lives and enable the full potential of children and young people with cerebral palsy in the UK.
Amanda Richardson MBE is the Chief Executive of UK Cerebral Palsy charity Action Cerebral Palsy:
The recent NICE publications on cerebral palsy, discussed in this article, can be found at the following links.
Cerebral palsy in under 25s: assessment and management (guideline):
Cerebral palsy in children and young people (Quality Standard):