Epilepsies in children, young people and adults

Quality statement

Children and young people with epilepsy are asked at epilepsy appointments about neurodevelopment and learning difficulties or changes in their learning progress, and adults who have learning disabilities are asked at epilepsy appointments about changes in their condition and other comorbidities. [new 2023]

Rationale

There is a higher prevalence of learning disabilities and neurodevelopmental conditions (for example, attention deficit hyperactivity disorder and autism spectrum disorder) in people with epilepsy than in the general population. Some treatments aimed at controlling seizures can also have adverse effects, for example on behaviour and alertness. Asking relevant questions as part of epilepsy care can help identify problems, comorbidities and adverse effects of antiseizure medications to enable appropriate interventions and treatment adjustments.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.

What the quality statement means for different audiences

Service providers (adult and paediatric epilepsy service providers) agree referral pathways with services for children and young people with neurodevelopmental conditions and learning difficulties, and adults with learning disabilities to ensure access to more specific assessments and treatment when necessary. They ensure that epilepsy appointments for children and young people include discussions about neurodevelopment and difficulties with learning or changes in their learning progress, and appointments for adults with learning disabilities include discussions about changes in their condition and any other comorbidities.

Healthcare professionals (neurologists, paediatric neurologists, paediatricians, epilepsy specialist nurses) ask children and young people, and their parents or carers as appropriate, at epilepsy appointments about their neurodevelopment, and any difficulties at school or with wider learning. They ask adults with learning disabilities, and their carers or advocates as appropriate, at epilepsy appointments about any changes in these conditions and other comorbidities. They advise on how any problems can be addressed and, if necessary, refer people for specialist assessments (such as a neurodevelopmental assessment), learning disability psychiatry input and social work support. For children this may involve referral to a neurodevelopmental paediatrician or a multidisciplinary team including speech and language therapists, educational psychologists and learning disability nurses.

Commissioners commission epilepsy services that discuss neurodevelopment and learning disabilities at epilepsy appointments. They work with service providers to develop referral pathways between epilepsy services, services for children and young people with neurodevelopmental conditions and learning difficulties, and services for adults with learning disabilities. Integrated care boards develop improvement plans in line with NHS England's National bundle of care for children and young people with epilepsy. These include mapping provision of, and referral pathways to, relevant neurodevelopmental services (bundle of care 'Mental Health 2' recommendation).

Children and young people with epilepsy and adults with epilepsy who have learning disabilities are asked questions at epilepsy appointments about difficulties they are having and changes they are experiencing. They are advised on how any problems can be addressed and are referred to other services if more specific assessments, treatment or care are needed. The epilepsy care team for disabled people (including people with a learning disability) and autistic people ensures they are receiving the support they need and that it fits with their epilepsy treatment.

Source guidance

Epilepsies in children, young people and adults. NICE guideline NG217 (2022), recommendation 9.2.2

Definitions of terms used in this quality statement

Equality and diversity considerations

People with epilepsy who are older, have a learning disability, have other complex needs (such as other comorbidities), or who do not read or speak English should have their information and support needs taken into account. This could include:

For people with additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's Accessible Information Standard or the equivalent standards for the devolved nations.