Epilepsy clinical outcomes

Clinical outcomes are broadly agreed, measurable changes in health or quality of life that result from our care. Constant review of our clinical outcomes establishes standards against which to continuously improve all aspects of our practice.

The Epilepsy Service provides multi-disciplinary assessment and treatment of complex epilepsy and developmental epilepsy. Members of the multi-disciplinary team include neurologists, neurosurgeons, neuropsychiatrists, neuropsychologists, developmental specialists, clinical neurophysiologists, EEG physiologists, nurse specialists, nurses, neuroradiologists, social workers, speech and language therapists, occupational therapists, play specialists, physiotherapists and administrative staff.

Epilepsy is usually treated with anti-epileptic medication. However, in very rare cases where medication does not control a child’s seizures and where scans indicate a structural brain abnormality is the cause, surgery may be recommended.

Our specialist epilepsy surgery programme has been running since 1992 and is the largest programme in the UK. In 2012, the NHS made epilepsy surgery a nationally commissioned service and in England there are four centres designated as part of the Children’s Epilepsy Surgery Service (CESS). The recognised centres are Birmingham, Bristol, Liverpool/Manchester, and GOSH in partnership with King's Health Partners. We work closely with the UCL Institute of Child Health (ICH), with many of the team working at both GOSH and the ICH.

As part of the treatment of epilepsy, some children are referred to the Neurodisability service, which offers a developmental epilepsy clinic. The Developmental Epilepsy Clinic is led by a multidisciplinary team that provides specialist assessment and management of the interaction between complex epilepsy and development. In this clinic, the team carry out developmental assessments, including assessments of the child's cognition, language, communication, movement skills and behaviour. This information is then used to make diagnoses, direct medical and surgical interventions, and to guide education, therapy and behaviour management.

The Developmental Epilepsy Clinic report audit was carried out in April 2013 on children seen in the clinic in 2012. The survey measures the team's effectiveness in providing information to families and carers to help them establish support for their child from local services. It was sent to 100 families, and 35 parents/carers returned completed surveys.

This chart shows parents’ perceptions of the extent to which the report helped their child’s condition to be understood by other people or services. The figures reflect that not all of these people or services were relevant for every child’s care. However, responses clearly indicate that the report is useful to families in communicating with others, including health professionals, about their child.

The following chart shows the extent to which recommendations were taken up by other people and services involved with the child. Where recommendations were applicable to a particular provider, the majority of responses indicate that some or all of the recommendations were taken up. However, in some cases no recommendations were taken up, the referral was not accepted, or the service was not available within the child’s local context. This warrants further investigation to determine the reasons and whether there is anything our service can do to further support the child and their family.

This information was published in July 2014 and will be updated in July 2017.