Date published: 12 October, 2023
Date last updated: 12 October, 2023
Children and young people

National bundle of care for children and young people with epilepsy: annex 2

Consideration in the delivery of epilepsy services to autistic children and young people and those with a learning disability.

Epidemiology and prevalence of epilepsy amongst autistic children and young people and those with a learning disability

Epilepsy is more common in autistic people than in the general population, being most likely to develop in the adolescence years contributing to decreased quality of life and increased risk of mortality. Epilepsy is one of the leading causes of early death for autistic people, who are more likely to have epilepsies which are resistant to standard treatments.

A recent review found that 12.1% of autistic people had epilepsy (Lukmaji et al, 2019). Additionally, research has shown that people with epilepsy have a higher prevalence of autism than those without epilepsy, with some studies showing an autism spectrum prevalence of 6.3% in individuals with epilepsy (Strasser et al, 2018).

Epilepsy is also more common in people with a learning disability than in the general population. Around 1 in 3 people (32%) who have a mild to moderate learning disability also have epilepsy. The more severe the learning disability, the more likely it is that a person will also have epilepsy. Around 1 in 5 people (20%) with epilepsy also have a learning disability. 

Clear information about epilepsy services should be provided both in advance of, and during, appointments. This is to appropriately support informed consent for autistic children and young people, and those with a learning disability, and their families and carers. This should meet individual communication needs. For example, ‘easy read’ versions, translations, visual prompt cards, verbal explanations, or explanations via video. In any discussion with a child or young person, health professionals should remember to use short sentences, repeat key information, and avoid jargon. Any reasonable adjustment an individual child or young person may have should also be considered in advance of the appointment (see Supporting people to access services).

It is essential that information explaining the benefits and risks of any investigations or treatment is provided to support children/young people and their families/carers understand any implications and come to an informed decision around how they wish to proceed. In reaching an informed decision, it is essential to provide adequate opportunity to speak to a healthcare professional so they can ask any questions or raise any anxieties. Family members/carers should be engaged early, as appropriate, and provided with information to support them in their role.

Mental capacity

  • Guided by current statutory principles in Section 1 of the Mental Capacity Act 2005 (MCA), the starting assumption must always be that those aged 16 or older have mental capacity unless a MCA assessment has shown otherwise. The MCA does not apply to under 16s; to decide whether a child under 16 is able to consent to their own medical treatment, without the need for parental permission or knowledge, they are assessed to establish if they are competent to make such decisions. This assessment is referred to as ‘Gillick Competence.’
  • If someone has mental capacity for a specific decision, they should be able to: a) understand and retain information about epilepsy services, b) use or weigh up the information and c) communicate their decision. When determining if someone has mental capacity to consent to attend and take up services, information must be provided in a way the individual can understand, and they must be supported to communicate their decision (e.g. in writing, verbally, signing or non-verbally). It is important all steps are taken to help people decide for themselves.
  • It is important to recognise that capacity to consent is fluctuant and can be decision specific. For people with fluctuating capacity, conversations about epilepsy services should take place at the optimal time for the individual person, when they are most likely to be able to demonstrate their mental capacity to make a decision. If it is assessed that someone does not have mental capacity, then a best interests process should be followed (see section on Individuals without mental capacity to consent’ below).

Declining the offer of epilepsy support and treatment services

  • If a young person has mental capacity, they can decline the offer of services and do not need to give a Opportunity for discussion around any anxieties or queries they might have should be made available to ensure informed decision making. Anyone who declines services should be made aware that should their position change they are still able to access services.
  • The person delivering epilepsy services is responsible under the MCA for making the decision as to whether someone has mental capacity to decide whether to have treatment. It is essential that any actions taken by the practitioner to assess capacity are clearly documented in a person’s care record. Their decision may be guided and supported by preparatory work carried out by the person’s wider health or care team.
  • During the epilepsy service appointment, the clinician should ensure that the individual person and the family member/carer supporting them to attend the appointment are fully informed about any intervention or treatment being provided and are aware of any side effects and how to treat them, as relevant. A record should be made that the person did not have mental capacity to consent and that consent was provided by a Welfare Deputy or Attorney with relevant authority, or that a best interests decision was made.

Supporting people to access epilepsy services

Under the Equality Act (2010), disabled people, including people with a learning disability or autistic people and those with a health condition that have a substantial and long-term effect on day-to-day activities, are entitled to receive reasonable adjustments to support access to health services. This means that steps must be taken to remove or minimise the barriers individuals may face in accessing epilepsy services and support.

Reasonable adjustments should be centred around an individual child or young person’s needs. These will help to ensure that children, young people and their families can access services safely and in a way that minimises their discomfort or distress. Some people may require more substantial adjustments which will require greater consideration and facilitation. NHS England’s Sensory-friendly resource pack is a helpful resource to consider how to support any sensory needs an autistic child or young person may have.

It is important that no assumptions are made around any reasonable adjustments required. A person-centred approach should be adopted which involves discussions with the child, young person and their family or carer/s. Such consideration should ideally be discussed well in advance of any clinical appointment and detail should be included on an individual’s summary care record as a minimum, or as part of the digital Reasonable Adjustment Flag.

For many people, their learning disability or autism will have minimal impact on their ability to attend clinical appointments and receive health and care services. However, for those individuals that have specific needs, local services should personalise and adjust appointments, where needed. Examples of the types of adjustments that may be considered, in consultation with the individual, and their family/carer ahead of appointments, include:

  • Ensuring wheelchair access in hospitals;
  • Providing easy read appointment letters;
  • Offering a priority appointment if they find it difficult waiting;
  • Longer appointments if someone needs more time with a doctor or nurse to make sure they understand the information they are given;
  • Scheduling the appointment in a familiar environment, which limits the need to travel where possible, e.g. in a residential care setting, school or arranging transport to the epilepsy service site;
  • Allowing a family member/carer and/or a specialist learning disability professional, (for example a learning disability liaison nurse (in hospital) or a community learning disability nurse) to accompany the person to their appointment and to support them to understand information and provide reassurance;
  • Taking the time to carefully explain information about the services and support being offered, listening fully and responding to the person’s questions and concerns. This should be done in a way that meets individual communication needs. For instance, visual prompt cards and ‘easy read’ information may be used, while for some autistic people, online or written information may be most appropriate.

Some individuals with a learning disability may also have a health passport which will detail the adjustments they require to access appointments, or details may be on their summary care record. Where possible reasonable adjustments should be identified in advance of the appointment and reception/support staff should also be made aware.

Further supporting information

Hospital passports

A hospital passport provides valuable information about an autistic person or someone with a learning disability, including personal details, the type of medication they are taking, and any pre-existing health conditions. The passport also includes information about how a person communicates and their likes and dislikes, which can be especially important when they are admitted to hospital or accessing health services. It is key to remember to ask if an individual has one.

Further supporting information

Joint working

Working together to ensure effective co-management of care and support between epilepsy services and primary care, for autistic children and young people and those with a learning disability is key. The distinct roles and responsibilities involved in epilepsy care and support, equally needs to be carefully defined. Clarifying the role of primary care providers in epilepsy care is crucial, as is delineating clinical pathways and decision points for referrals. A patient-centred approach to health care is needed with an emphasis on the co-ordination of epilepsy-specific services with care for comorbidities and with links to community services. It should be recognised there may be a wide array of professionals involved in the support and treatment of children and young people with a learning disability and autistic children and young people. Professionals may include neurological consultants, epilepsy specialist nurses, CAMHS (Child and Adolescent Mental Health Services), GPs, pharmacists, paediatricians, school nurses and health visitors, social workers, learning disability and autism nursing teams, CAMHS, dieticians, SEND (Special Educational Needs and Disability) Teams, schools and colleges, care home managers and workers, other healthcare practitioners as well as parents and carers.

Annual Health Checks (AHCs) and Health Action Plans (HAPs)

People with a learning disability and autistic people have poorer physical and mental health than many other people. People with a learning disability can sometimes find it hard to know when they are unwell, or to tell someone about it. An annual health check can improve people’s health by identifying unmet health needs earlier and are offered to all people with a learning disability aged 14 or over within primary care. An annual health check provides time for people with a learning disability to talk about anything that is worrying them and means they can get used to visiting their GP. AHCs and HAPs provide a useful opportunity for additional discussion and development of mutually agreed health improvement plans, which may allow primary care colleagues to review how individuals are managing their epilepsy and any other long-term conditions. Epilepsy services should be aware of the importance of the Annual Health Check within primary care, and encourage their patients to attend. It should be noted that the potential benefits of introducing a similar autism specific health check are also currently being considered.

Further supporting information

STOMP/STAMP

STOMP-STAMP stands for Stopping the Over-Medication of people with a learning disability, autism, or both (STOMP) and Supporting Treatment and Appropriate Medication in Paediatrics (STAMP). Autistic children and young people or those with a learning disability or both should only be prescribed psychotropic medication when clinically indicated. The experience of parents, carers, clinicians, and young people would indicate that psychotropic medication prescribed in childhood is often continued long past its original prescribing rationale. Regular and timely reviews should be undertaken so that the effectiveness of the medication is evident and balanced against potential side effects. This will mean that children and young people are only getting the right medication, at the right time, for the right reason.

Further supporting information

Education, Health and Care Plans (EHCP)

Schools in England must provide support to children with special educational needs (SEN) as part of their standard offer to children. Where a child requires additional support that goes beyond what a school, college, or nursery can typically deliver from their own budgets or staffing then they may need an Education Health and Care Plan (EHCP).

An EHC plan is a legally binding document outlining a child or young person’s special educational, health and social care needs. The document must list all the child’s special educational needs, outline the provision to meet each of the needs and that provision must be specific, detailed, and quantified. The plan names the school/setting which is to provide the provision and the plan is legally enforceable.

It is important that any consideration and support that may be needed with respect to an individual child or young person’s epilepsy management, and particular considerations needed in the support and facilitation of this by their school or college, should be raised and included as part of any developed education, health and care plan.

Further supporting information

Further resources

References

  1. Autistica, Epilepsy Research UK, Young Epilepsy. Autism and Epilepsy: Laying out the evidence [Internet]. October 2021 [cited 2023 April 12]. Available from: www.youngepilepsy.org.uk/reports/autism-and-epilepsy-laying-out-evidence
  2. Lukmanji, S., Manji, S.A., Kadhim, S., Sauro, M.K., Wirrell, E.C., Kwon, C.S., Jette, N. The co-occurrence of epilepsy and autism: A systematic review. Epilepsy & Behaviour [Internet]. 2019 [cited 2023 April 11], 98:238-248. Available from: https://doi.org/10.1016/j.yebeh.2019.07.037.
  3. Strasser, L., Downes, M., Kung, J., Cross., J.H., De Haan, M. Prevalence and risk factors for autism spectrum disorder in epilepsy: a systematic review and meta-analysis. Developmental Medicine and Child Neurology [Internet]. 2017 [cited 2023 April 11], 60(1):19-29. Available from: https://doi.org/10.1111/dmcn.13598
Date published: 12 October, 2023
Date last updated: 12 October, 2023