NICE Guideline for Cerebral Palsy in Under 25s

The National Institute for Health and Care Excellence (NICE) has published its guideline for the assessment and management of cerebral palsy in children and young people under the age of 25. The guideline aims to ensure that young people with cerebral palsy receive the care and treatment needed for the developmental and clinical conditions associated with cerebral palsy to optimise their activity and independence.

In a series of recommendations based on research, evidence and health care practice, the guideline sets out key factors relating to the risk, incidence, diagnosis and treatment of cerebral palsy. Recommendations are also given for the way in which information about the condition is communicated to young people with cerebral palsy, their parents and carers. Standardised recommendations contained in a guideline are intended to raise standards and avoid variations in care between hospitals in different areas of the country. Baseline standards of information – along with guidance about when to refer to child development centres or liaise with multidisciplinary teams, and when to carry out invasive or uncomfortable but necessary interventions such as MRI scans or fibroscopic endoscopic feeding assessments – should provide valuable direction as to expected standards of care and provision.

Available online and accessible to all, the NICE guideline is aimed at health and social care professionals and young people with cerebral palsy, their parents and carers.

At Boyes Turner, we specialise in helping families with children disabled by cerebral palsy. Our clinical negligence team are experts at identifying the circumstances which give rise to a damages claim. Where liability for the injury is established against a hospital, we secure maximum value compensation awards which enable the family to provide care, equipment, adapted accommodation, therapies and future security for their brain damaged child.

Whilst the percentage of children with cerebral palsy caused by medical negligence is small, many of the parameters discussed in the NICE Guideline for Cerebral Palsy in Under 25s are of direct relevance to our clients.

The guidance alerts clinicians to the antenatal, perinatal and postnatal risk factors for cerebral palsy. It’s important to realise, for example, that prematurity naturally gives rise to risks and complications, including  cerebral palsy from periventricular leukomalacia and retinopathy of prematurity. Strokes can occur around the time of childbirth which are often unavoidable and will only give rise to a claim in limited circumstances where it can be proven that poor treatment caused additional injury.

Other known risks for cerebral palsy raise the standard of medical care that should be given, such as the risk of uterine rupture in vaginal childbirth after a previous caesarean section, or suspected placental abruption during pregnancy.

Perinatal hypoxic ischaemic encephalopathy (HIE) or birth asphyxia is often the cause of our clients’ cerebral palsy. Contemporaneous fetal heart monitoring recorded on cardiotocograph (CTG) traces during labour enable us to see whether the risk of HIE was obvious and sufficient to mandate instrumental or caesarean delivery in time to avoid the injury. The brain damage may have occurred in the final few minutes prior to delivery or more slowly over the course of the hours before.

The guidance refers to the risk from postnatal meningitis which, if not diagnosed and treated properly, can give rise to cerebral palsy and, depending on the circumstances, liability for a claim.

The NICE Guideline for Cerebral Palsy in Under 25s reminds us that MRI scanning may not reveal the timing, the cause or full extent of the injury. MRI scans generally involve giving a general anaesthetic to an already compromised child and early scans, before the age of 2, may not reveal as much information as would be available later. However, certain patterns of damage are often revealed on MRI scans which, along with blood tests at birth, indicate to us that this child’s cerebral palsy is more likely to be associated with asphyxial injury as a result of the management of labour and delivery. Certain types of cerebral palsy are also more likely, in the presence of negligent care, to give rise to a claim.

The guidance refers to some of the early signs of cerebral palsy, such as abnormal or asymmetrical movements, hypotonia (floppiness), difficulties with feeding or missed developmental milestones in sitting and walking. For some parents, this is the point at which they begin to ask questions and the guideline clarifies the information that should be given to parents at each stage. For many, this is the point at which they approach us, asking us to investigate whether there is cause for a claim. Uncertainty, unanswered questions and worries about the child’s future can be extremely stressful for parents as they realise that something is wrong. We welcome the clarity that the guidance brings to the communication that should take place between health practitioners and parents at this difficult time.

As the NICE guideline reminds us, in addition to problems with movement and postural control, children with cerebral palsy have difficulty with speech and language and communication, difficulties feeding and associated risks of aspiration and choking which threaten to reduce their life expectation. One in two children with cerebral palsy has visual impairment. One in ten has problems with hearing. One in three has epilepsy, which rises to one in two if the cerebral palsy is dyskinetic, and one in two has learning disability. As the guideline points out, coordinated multidisciplinary provision is critical as these children rely on physiotherapy, speech and language therapy, occupational therapy, and targeted educational support to enable them to live safe, healthy and fulfilling lives.

At Boyes Turner our specialist cerebral palsy lawyers have helped hundreds of families with cerebral palsy secure compensation to provide the therapies, care, specialist equipment and accommodation that is so vital for their brain injured child. Our educational specialists regularly secure special educational support and appropriate school placements for our disabled clients.

We support every effort to raise standards of care and provision for children and young people affected by cerebral palsy.

I have to say I was extremely impressed with the service in what was a very difficult time for myself and my family. The advice and support I had from the team was fantastic and invaluable. They put mine and my wife's mind at rest on many occasions and got a great result for us. Thank you from all of us.

Mr Horne

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