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This guideline covers diagnosing and managing epilepsy in children, young people and adults in primary and secondary care, and referral to tertiary services. It aims to improve diagnosis and treatment for different seizure types and epilepsy syndromes, and reduce the risks for people with epilepsy.

MHRA advice on antiepileptic drugs in pregnancy: Recommendations in this guideline on carbamazepine, gabapentin, lamotrigine, levetiracetam, oxcarbazepine, phenobarbital, phenytoin, pregabalin, topiramate and zonisamide are in line with the MHRA updated safety advice on antiepileptic drugs in pregnancy.

MHRA advice on valproate: Recommendations on valproate are in line with the MHRA guidance on valproate use by women and girls. Valproate must not be used in women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years), unless other options are unsuitable and the pregnancy prevention programme is in place. The MHRA has published temporary advice on the valproate pregnancy prevention programme during the COVID-19 pandemic.

August 2023: The MHRA issued new safety advice on risks associated with valproate for the under 55s in December 2022. The valproate recommendations in this guideline will be reviewed once further advice from the MHRA is available. People currently taking valproate should not stop taking it unless they are advised by a specialist to do so.

Recommendations

This guideline includes recommendations on:

Who is it for?

Healthcare professionals in primary, secondary and tertiary care

Commissioners, providers and voluntary organisations

People with epilepsy, their families and carers

Guideline development process
How we develop NICE guidelines
This guideline updates and replaces NICE guideline CG137 (January 2012) and NICE evidence summaries ESNM7, ESNM17 and ESNM37.

Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.

Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

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Epilepsies in children, young people and adults

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This guideline covers diagnosing and managing epilepsy in children, young people and adults in primary and secondary care, and referral to tertiary services. It aims to improve diagnosis and treatment for different seizure types and epilepsy syndromes, and reduce the risks for people with epilepsy

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We are a non-emergency service and can provide advice and support where required - relating to concordance with medication, seizure management and education.

We accept:

Children and Young people from birth up to their 16th birthday. They must be in full time education and under the care of a Consultant Paediatrician or Consultant Neurologist.

Children and young people with Complex Health Care Needs, from birth up to their 18th birthday who have an Education Health Care plan. They must be in full-time education and under the care of a Consultant Paediatrician or Consultant Neurologist.

Parents and carers can expect a home visit from the epilepsy nursing team within four weeks of the team receiving a referral. During the initial assessment parents and carers will be given a newly diagnosed epilepsy information pack which contains useful information and contact details for the team.

We also provide school care plans, as part of an initial assessment, to maintain safety should a seizure occur in school or nursery. School care plans are referenced under additional information below.

Referrals are generally received from a Consultant Paediatrician or Consultant Neurologist and must indicate that consent has been obtained from the parent or carer. The child or young person must have a confirmed diagnosis of epilepsy. To refer, please send a referral letter to mft.childrensepilepsyteam@nhs.net

Parents and carers can also self-refer as long as your child has a diagnosis of epilepsy and is under the care of a community paediatrician or neurologist.

The nurse is happy to discuss any issues relating to your child's epilepsy. This can be via telephone, home visit or clinic appointment. We can help determine what support can be offered or direct you to the appropriate service.

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Children's Epilepsy Service - Manchester Local Care Organisation

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We are a non-emergency service and can provide advice and support where required - relating to concordance with medication, seizure management and education. We accept: Children and Young people from birth up to their 16th birthday. They must be in full time education and under the care of a Consultant Paediatrician or Consultant Neurologist.

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The Local Offer - Manchester City Council

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The Local Offer - Manchester City Council

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The Manchester Local Offer brings together information in one place. It helps children and young people with SEND up to the age of 25 and their parents understand what services and support they can expect locally. This includes their statutory entitlements which are required by law. Watch our short film about Manchester Local Offer localoffer@manchester.gov.uk, 0161 219 2125.
Accessibility - Click on the orange circle on the top right to open the ReachDeck toolbar. (If you are on a mobile phone, you may need to swipe left to make it appear.) This provides a range of access options, including text enlargement, MP3 Maker and language translation. You can also make changes from the Accessibility option at the top of each page.

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The Local Offer (Special Educational Needs and Disability)

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The Manchester Local Offer brings together information in one place. It helps children and young people with SEND up to the age of 25 and their parents understand what services and support they can expect locally. This includes their statutory entitlements which are required by...

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When your child is diagnosed with epilepsy, education is likely to be one of your first concerns.

Many children, especially once their epilepsy is controlled by medicine, are unlikely to need any extra support. But some children will continue to have seizures and need medical or other support.

This information covers the ways in which the school should be supporting your child, and the laws behind that. If your child is moving on from school, we have information about the support they could get at college or university.

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Education and epilepsy - Epilepsy Action

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This information covers the ways in which the school should be supporting your child, and the laws behind that. If your child is moving on from school, we have information about the support they could get at college or university.

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Group Training Checklist - Epilepsy Awareness

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Group Training Checklist - Epilepsy Awareness

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The NICE British National Formulary for Children (BNFc) site is only available to users in the UK (England, Scotland, Wales and Northern Ireland).

If you are outside the UK, you can access BNFc content by subscribing to Medicines Complete.

If you believe you are seeing this page in error, please contact us.

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The NICE British National Formulary for Children (BNFc) site is only available to users in the UK (England, Scotland, Wales and Northern Ireland)

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On this page, find out what to do if you see someone having a seizure. There is information about the different seizure types and how you can help keep someone safe by following some simple steps.

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Find out about different seizure types and helping with first aid for seizures. How to keep someone safe by following some simple steps.

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Epilepsy Action support for people with epilepsy. Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy.

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Epilepsy is one of the most common long-term conditions for children and young people (CYP), affecting approximately 112,000 children and young people within the UK.

Epilepsy can have a significant impact on the quality of life of CYP including on social, educational and future employment activity.

Epilepsy is one of the five key clinical areas within the CYP Core20PLUS5 framework.

Children and young people in the most deprived areas of England are more likely to have epilepsy than those in less deprived areas.

People with epilepsy have a higher prevalence of neuro developmental disorders (e.g. learning disabilities and autism spectrum disorder) than in the general population.

Key epilepsy metrics to identify and track areas for local improvement are included within the National Children and Young People Transformation Programme Dashboard.

This Bundle of Care covers each of the below four areas of focus:

Variation in care: variation in the delivery of key aspects of epilepsy care continue to persist, such as access to epilepsy specialist nurses and the provision of information on Sudden Unexpected Death in Epilepsy (SUDEP).

Mental health and wellbeing: CYP with epilepsy have a higher incidence of mental health conditions than the general population, yet screening and support within services vary.

Tertiary care and epilepsy surgery: CYP may be missing out on, or having delayed access to, specialist neurological care and epilepsy surgery.

Transition from paediatric to adult services: Support and pathways for patients to transition to adult services varies considerably.

This bundle contains standards of care for each of the four areas of focus, with key recommendations for systems to consider.

Executive summary

NHS England's Children and Young People's (CYP) Transformation Programme has established a programme of work to improve care and outcomes for CYP with epilepsy. In response to supporting systems with epilepsy quality improvement, the programme has developed key standards around the care and delivery of epilepsy services. Recommendations for integrated care boards (ICBs) to support implementing key standards have also been developed.

This Bundle of Care covers each of the four areas of focus within the CYP epilepsy programme:

addressing variation in care between epilepsy services,

supporting the mental health and wellbeing of CYP with epilepsy,

improving referrals into tertiary services and the Children's Epilepsy Surgery Service (CESS), and

improving the transition from paediatric to adult epilepsy services.

NHS England has worked with key stakeholder organisations, as well as young people and their families, to develop this National bundle of care for CYP with epilepsy. National working groups were formed on each area of focus to inform the standards and recommendations set out within this document. In addition, supporting resources have been identified or developed by the working groups to aid implementation of the standards and recommendations made.

NHS England has used data from the national Epilepsy12 audit to inform the development of these standards and recommendations. The Epilepsy12 audit provides organisational and clinical data on care provided to CYP with epilepsy. A data-led approach has been taken to identify key areas of focus, and these recommendations build on areas of development highlighted in the audit.

The standards within each of the four areas of focus can be found in Annex 1, alongside the rationale for each of the areas of focus. These standards are aligned to guidance from NICE. Recommendations on specific standards have been developed to support systems in commissioning consistent quality epilepsy care for CYP. Implementation of these recommendations are expected to reduce overall care-costs through reducing unplanned hospital admissions, ensuring timely referrals into tertiary care, and supporting earlier identification of co-morbidities.

ICBs are encouraged to develop improvement plans in line with recommendations made within this bundle. The majority of recommendations consist of undertaking a local mapping of epilepsy services against the key standards. The National CYP Transformation Programme dashboard contains epilepsy metrics to support systems in undertaking this. In addition, supporting resources have been provided within appendices to aid local delivery of this bundle.

Background

Epilepsy is one of the most common long-term conditions among children and young people, affecting approximately 112,000 CYP within the United Kingdom. It can have a significant impact on the quality of life of CYP including onsocial, educational and employment activity. Epilepsy is characterised by recurrent seizures, however most individuals with active epilepsy can maintain satisfactory control of seizures through appropriate use of antiepileptic drugs. Where pharmacological management is not effective, a select group of CYP may benefit from epilepsy surgery.

Optimal management of epilepsy improves health outcomes and can reduce emergency admissions. In addition, it can also help to support mental health and wellbeing and minimise other impacts on social, educational and employment activity. For example, there is evidence of poorer education achievement in children with active epilepsy, and people with epilepsy may face a number of complex and interacting problems in finding and maintaining employment later in life.

The National Institute for Health and Care Excellence (NICE) has published guidelines on the diagnosis and management of epilepsy ( NG217). There is also a quality standard for epilepsy in children and young people ( QS27) which is due to be updated in December 2023. The standards developed within this document are aligned to NICE guidelines.

NHS England's ambition is to improve the quality of care for all CYP with epilepsy. This includes working with systems to ensure they take a whole system approach to the diagnosis, management, and treatment of epilepsy. This will include mapping pathways of care, supporting the delivery of developmentally appropriate care, and sharing examples of good practice. NHS England has developed this bundle in response to requests from systems to enable greater focus on the delivery of epilepsy services.

NHS England, supported by Young Epilepsy, has worked with a range of stakeholders to develop the standards and key recommendations within this bundle. These stakeholders include NHS England national and regional programmes, paediatric and adult epilepsy clinicians, voluntary sector organisations, and CYP with epilepsy. This bundle has been approved by NHS England's National Children and Young People Epilepsy Oversight Group and developed through national working groups.

To date, NHS England's CYP Transformation Programme has:

Funded the appointment of dedicated regional clinical leadership for CYP epilepsy. These posts are expected to support the delivery of key recommendations within this Bundle of Care.

Established a National CYP Epilepsy Oversight Group, which is co-chaired by NHS England and Young Epilepsy. The Oversight Group supports the development of national policy and strategy to improve the quality of care for CYP with epilepsy, as well as mobilise key stakeholder organisations.

Included epilepsy as one of the five key clinical areas within the CYP Core20PLUS5 framework, the national NHS England approach to support the reduction of health inequalities.

Supported the Epilepsy12 audit programme to ensure a data-led approach towards improvement, including the reporting of data at Integrated Care Board level.

Supported the Epilepsy Quality Improvement Programme (EQIP). This is a structured programme run by the Royal College of Paediatric and Child Health (RCPCH) to build improvement capability within selected Trusts. NHS England will share future learning and case studies to support wider scaling of specific improvement interventions from the EQIP programme. These will be in line with the recommendations and standards within this document.

Funded a number of Epilepsy Specialist Nurses with a specific focus on integration and continuity of care for patients across organisational boundaries. These posts are due to commence in 2023/24. Learning from these roles are expected to help inform future models of care.

Funded pilots on integrating mental health care within epilepsy services, to commence in 2023/24. These pilots aim to build an evidence base on how mental health and wellbeing support can be effectively integrated within secondary care epilepsy outpatient services.

Supporting resources have been identified or developed by the working groups to aid the implementation of the standards and recommendations made within this document. These are contained within the relevant appendices.

To support identifying local areas for improvement, and the tracking of progress made against the recommendations within this bundle, key Epilepsy12 audit metrics are included within the National CYP Transformation Programme Dashboard. This is available on the NHS England application platform.

Health inequalities

CYP living in the most deprived areas of England are more likely to have epilepsy than those in less deprived areas.

Epilepsy is one of the five key clinical areas within the Children and Young People Core20PLUS5 Core20PLUS5 is the national NHS England approach to support the reduction of health inequalities at both national and system level.

See here for an accessible version of the above CORE20PLUS5 CYP infographic.

In 22/23, those from the most deprived quintile of the population were twice as likely to have an emergency admission for epilepsy compared to those in the least deprived quintile.

CYP with epilepsy are more likely to have neurodevelopmental disorders. This includes a diagnosis of a learning disability, autism, and attention deficit hyperactivity disorder (ADHD).

One in five CYP with epilepsy also have a learning disability.

A recent review found that 12.1% of autistic people have epilepsy.

Annex 2 contains specific information to consider in delivering epilepsy services for autistic CYP and those with a learning disability.

According to the Learning from Lives and Deaths (LeDeR) review, epilepsy is one of the five most common causes of treatable death in CYP with a learning disability aged four to 18.

Perspective from young people living with epilepsy

This programme of work has been supported by young people who have been diagnosed with epilepsy. NHS England has worked closely with Young Epilepsy to develop this Bundle of Care. Young Epilepsy co-chairs the National CYP Epilepsy Oversight Group alongside NHS England, and Young Epilepsy's young representatives have played a key role in informing the programme's priorities, including sitting on the National Oversight Group and contributing to the work of the National Working Groups.
"Living with epilepsy has affected all areas of wellbeing, but the mental impact has been the hardest to deal with" "I feel forgotten within the system and very much alone" "Paediatric care was amazing, but there wasn't a transition period. One day I was just handed off to a new service with no idea who I was seeing or what these people were like" "The transition needs to be less stressful. I formed a bond with my epilepsy doctor and it was extremely confusing when I couldn't see him anymore. At the time it felt like a massive part of my support system had been taken away" "Care plans would be really helpful for parents and educational settings, it would reduce the amount of explaining you would have to do when attending school"
Addressing variation in care between epilepsy services

Recommendations for ICBs

Variation 1

All CYP with epilepsy should have access to an epilepsy specialist nurse (ESN) as set out in NICE guidelines ( NG217, 11.1.1)
Recommendation

ICBs to identify gaps in ESN provision and work with relevant providers to ensure plans are in place to address any variation in access.
Measures

Epilepsy 12: Percentage of children and young people with epilepsy, with input by epilepsy specialist nurse within the first year of care.

The following may support in the delivery of this recommendation:

Variation 2

All CYP should receive timely access to appropriate electroencephalogram (EEG) and magnetic resonance imaging (MRI) investigations as per NICE guidelines ( NG217, 1.2 and 1.3).
Recommendations Measures
Variation 3

All CYP should have an agreed and comprehensive written care plan provided to them as per NICE guidelines ( NG217, 2.1.7). This should be for home and education settings with evidence of involvement from the CYP and their parent/carer.
Recommendation

ICBs to identify and work with Providers to increase comprehensive care planning completion rates where they fall below 75% based on Epilepsy12 audit data.

The care plan should include:

diagnosis (including seizure descriptions and any known seizure triggers),

current medication and treatment details,

any impact on learning and behaviour,

parental prolonged seizures care plan,

water safety,

first aid,

general participation and risk (safety and injury prevention at home and at school or work, for example road safety, heights, cooking, sleep, adherence), and

Sudden Unexplained Death in Epilepsy (SUDEP) information

The care plan should be a patient-held individualised document or copy of a clinic letter that includes care planning information. It should also include service contact details, have patient/carer/parent agreement and be updated when necessary. Providers should ensure care planning takes into account reasonable adjustments for CYP with a learning disability or autistic CYP. This should be reviewed at least annually, and should help inform relevant school healthcare plans.

Measures

Epilepsy12: Percentage of children with epilepsy after 12 months where there is evidence that a) care planning includes patient held individualised epilepsy document or copy clinic letter that includes care planning information, b) there is patient/carer/parent agreement, and c) care planning has been updated when necessary.

Epilepsy12: Percentage of children diagnosed with epilepsy with documented evidence of communication regarding core elements of care planning: parental prolonged seizures care plan, water safety, first aid, general participation and risk, SUDEP, and service contact details.

Epilepsy12: Percentage of children and young people with epilepsy aged 5 years and above with evidence of a school individual healthcare plan by 1 year after first paediatric assessment.

The following may support in the delivery of this recommendation:

Variation 4

All CYP/parents/carers should receive personalised and developmentally appropriate information on the risks of Sudden Unexpected Death in Epilepsy (SUDEP). This should include discussions on minimising individual risks listed in NG217, 10.1. This should be documented and revisited annually as part of the care planning process.
Recommendation

ICBs should identify and work with providers to increase provision of information on SUDEP where they fall below 75%, based on Epilepsy12 audit data.
Measures

Epilepsy12: Percentage of CYP with evidence of provision of information on SUDEP.

The following may support in the delivery of this recommendation:

Supporting the mental health and wellbeing of CYP with epilepsy

Recommendations for ICBs

Mental Health 1

CYP over the age of five years old with epilepsy should have their mental health screened routinely within epilepsy clinics.
Recommendations Measures

Epilepsy12: Percentage of children with epilepsy over five years where there is documented evidence that they have been asked about mental health either through clinical screening, or a questionnaire/measure.

The following may support in the delivery of this recommendation:

Mental Health 2

CYP with epilepsy who have been identified as requiring additional support with their mental health and wellbeing should be referred to an appropriate service to manage their mental health care. Self-help resources to support wellbeing should be made available to CYP with epilepsy. Providers should have access to clear referral pathways and an up-to-date directory of local services of providers/organisations offering the appropriate level of support. This should include services within healthcare, education and Voluntary Sector and Community Enterprise (VCSE) organisations. It may include Child and Adolescent Mental Health Services (CAMHS), NHS Talking Therapies for Anxiety and Depression, Mental Health Support Teams/educational psychology, psychology support, specialist neuropsychology and neuropsychiatry services, and VCSE mental wellbeing support depending on the level of need.

In addition, CYP with identified neurodevelopmental needs (e.g. Attention Deficit Hyperactive Disorder, or Autism Spectrum Disorder) should be referred into relevant local neurodevelopmental pathways.
Recommendations

ICBs should map provision of, and referral pathways to, relevant mental health providers and services within their system. This should include mapping appropriate providers of CAMHS, mental health support teams and educational psychology, and specialist neuropsychology, clinical psychology, and neuropsychiatry services.

ICBs should map availability of VCSE Providers who may be able to provide support for mental wellbeing for CYP with epilepsy including through social prescribing.

Where gaps in referral pathways are identified, ICBs should have clear plans in place to develop appropriate criteria and pathways into relevant services.

ICBs should map provision of, and referral pathways to, relevant neurodevelopmental services within their system.

ICBs should ensure specialist psychological advice is made available across the system to support the management of complex co-morbidities arising alongside the development of epilepsy. Where advice is not available, ICBs should develop appropriate plans to mitigate risks.

ICBs should determine if there are appropriate local pathways in place to support specialist advice and management for CYP with non-epileptic attack disorder (NEAD). Where such pathways are not available, ICBs should develop appropriate plans to mitigate risks particularly in the context of co-occurring epilepsy syndromes and NEAD.

Measures

Epilepsy12: Percentage of children with epilepsy and a mental health problem who have evidence of mental health support.

Epilepsy12: Percentage of Trusts with agreed referral pathways for children with mental health concerns.

Local Audit: evidence of the availability of specialist psychological advice and local pathways.

The following may support in the delivery of this recommendation:

Every Mind Matters: This contains advice to enable parents and carers to look after their children's mental wellbeing, as well as self-help resources.

Mental health 3:

Providers should aim for mental health care to be integrated within the epilepsy service. This may comprise of epilepsy clinics where mental health professionals can provide direct input into clinical care, and meetings where epilepsy and mental health professionals can discuss individual patients.
Recommendation

ICBs to identify and map providers which have mental health care integrated within the epilepsy service. This comprises epilepsy clinics where mental health professionals can provide direct input into clinical care (for example multi-disciplinary team (MDT) meetings). Where providers do not have evidence of integrating mental health care within epilepsy services, there should be clear plans to mitigate this risk via the development of appropriate pathways into mental health services.
Measures

Epilepsy12: Percentage of Trusts where mental health provision is facilitated within epilepsy clinics.

The following may support in the delivery of this recommendation:

Case studies on integrated mental health care (Appendix 5)

Improving referrals into tertiary services and the Children's Epilepsy Surgery Service (CESS)

Recommendations for ICBs

Tertiary care 1:

All CYP who meet criteria for tertiary neurology referral should have timely access to the relevant tertiary specialist with expertise in managing complex epilepsy. This should be within two to four weeks from referral depending on criteria set out in NICE guidelines ( NG217, 3.1.3 and 3.1.4). Assessment will include consideration of all potential treatment modalities including an evaluation for epilepsy surgery. An initial appointment in tertiary care may be held at the tertiary centre or through a locally held paediatric neurology outreach clinics.
Recommendations Measures

Epilepsy12: Percentage of Trusts that had agreed referral pathways to tertiary paediatric neurology services.

Epilepsy12: Time in weeks from referral to neurologist input.

Epilepsy12: Health Boards and Trusts that were hosting satellite paediatric neurology clinics.

Tertiary care 2:

All CYP meeting criteria for epilepsy surgery should be referred into a tertiary paediatric neurology service for consideration of referral to the Children's Epilepsy Surgery Service (CESS) for an initial assessment as per NICE guidelines ( NG217, 8.2).
Recommendation

ICBs to ensure that there are clear and consistent referral pathways within their system for CESS evaluation. This pathway should involve a referral to a tertiary paediatric neurology service for consideration of referral to a children's epilepsy service surgery centre (NG217, 8.2)

ICBs to monitor referral rates within their population such that they are consistent with the expected rates. This will be supported through the provision of referral incidence rates data to Regions.

Measures
The following may support in the delivery of this recommendation:

Tertiary care 3:

There should be an defined model of shared care between tertiary and secondary care epilepsy services.
Recommendations Measures
Improving the transition from paediatric to adult epilepsy services

Recommendations for ICBs

Transition 1:

All CYP with epilepsy should have a designated named worker responsible for initiating and planning for transition, taking into account any co-existent conditions, as per NICE guidelines ( NG43, 1.2.5).
Recommendations

ICBs should ensure CYP with epilepsy have access to an epilepsy specialist nurse (or access to a Community Paediatric nurse if the CYP has co-morbidities managed under the community paediatric team) to support them through transition.

The consultant paediatrician primarily responsible for managing the care of CYP with epilepsy should identify those needing transition to adult services between one and two years before proposed time of transfer.

Measures
Transition 2:

Transition provision and resources should include key essential components and take into account any co-existing conditions and the complexity of epilepsy. The information provided should be individually tailored to the CYP with epilepsy.
Recommendations Measures

Epilepsy12: Percentage of Health Boards and Trusts that were using structured resources to support transition.

Local audit: see suggested proforma (Appendix 10).

The following may support in the delivery of this recommendation:

Transition 3:

During the transition period, paediatric and adult multidisciplinary teams should jointly review the person's diagnosis and management plan as per NICE guidelines ( NG217, 11.2.4) Services should involve the Young Person and their family or carers in planning and making decisions about their care.
Recommendation

ICBs should map outpatient services consisting of both adult and paediatric professionals. Where no service exists, ICBs should work with providers to develop plans for the provision of joint clinics. This may include the development of multi-disciplinary team (MDT) case base discussions between the paediatric and adult teams.
Measures

Epilepsy12: % of Trusts with outpatient service for epilepsy where there is a presence of both adult and paediatric professionals.

Epilepsy12: % of Trusts where adult neurologists were routinely involved in transition to adult services.

Transition 4:

Transfer into adult services should be developmentally appropriate and at a time of 'relative stability' as per NICE guidelines ( NG43, 1.2.3).
Recommendation Measures
The following may support in the delivery of this recommendation:

Publication reference: PRN00318_i

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National bundle of care for children and young people with epilepsy

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Epilepsy is one of the most common long-term conditions for children and young people (CYP), affecting approximately 112,000 children and young people within the UK. Epilepsy can have a significant impact on the quality of life of CYP including on social, educational and future employment activity.

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ESNA Epilepsy Specialist Nurse Competency Framework

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ESNA Epilepsy Specialist Nurse Competency Framework

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Talbot House Manchester - Supporting Families of People with Learning Disabilities

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Talbot House Manchester - Supporting Families of People with Learning Disabilities

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We are here to help and support Parent Carers across Manchester!!

If you would like to book an appointment or would like to find out more please call us on;

0161 203 4095

We are open 9:30am to 3:00pm, Monday to Friday

Or email us at;

For the latest news and information please check out our Facebook and Twitter pages;

So, what do we do? Talbot House is a charity that provides support services for parents and unpaid carers of people with severe learning disabilities who live in the Manchester area. We operate a user-led one-stop-shop service that has supported parents and carers of all age ranges and ethnic backgrounds for over 45 years (founded 1976).

Our Mission statement is;
"Talbot House exists to improve the quality of life for parent-carers of people with learning disabilities. Our parents receive respite and support in a safe environment where they can laugh, cry, identify with and support each other through the sharing of personal experiences with honesty and acceptance"
Below is an overview of the support we provide for our service users;

How we support our carers ;

One to one support

Advocating for carers

Information about benefits

Brief Interventions

Help with form filling, letter writing

Emotional and wellbeing Support

Our THRIVE service for elderly carers (see our THRIVE section)

Housing, education concerns and much more ...

In addition to our support services we also use our Support Centre building as hub for carers to enjoy various community events and activities, and to meet and socialize with other carers to build friendships and support networks.

Social and Wellbeing Activities and Events;

Monthly Carers Lunch

Free Pampering Services - nail bar, massage and beauty Treatments

Drop-in service

Day trips our

Social venue for carers to meet (Tuesday & Fridays)

Training and Information sessions for carers

Call us or pop into the centre you will always be made welcome and our tea is second to none!

We are open from 09:30am - 3:00pm Monday to Friday

Talbot House is extremely grateful and thankful for the funding and support we have received from the below organisations and trusts during 2022 & 2023. Without them we wouldn't be able to support our parent carers, so thank you !!

Find out more about our funders here

Talbot House is an associate partner of Carers Manchester.

Carers Manchester is a partnership of statutory and voluntary organisations, working together to improve services for Manchester's unwaged carers.

This partnership has developed a new pathway for unwaged carers in the city to receive advice, guidance and support.

Talbot House works within this partnership and we are here for the unwaged carers of Manchester and our local community, striving to ensure that they get the right support at the right time, and in the right place.
Contact Point
Phone number: 0161 543 8000

Email: contact.point@carersmanchester.org.uk
www.carersmanchester.org.uk

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Talbot House is a support service for parents and carers of people who have learning disabilities who live in the Manchester area. It is led by parents themselves. Listed here are some of the services we offer; emotional support, consulting with carers to shape services, access to training for carers, information about money and benefits, breaks for carers and advocacy.

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Welcome

This guide is for people who work in schools or other educational settings. It provides wide-ranging information, guidance and educational strategies for supporting young people with epilepsy to ensure they are safe and included in all aspects of school life.

Schools should ensure each young person with epilepsy has an Individual Healthcare Plan (IHP) and that the school has a policy on supporting pupils with medical conditions.

Good communication between the school, parents and the young person plays a key role in ensuring the right support is in place.

All staff working with a young person with epilepsy should also be trained to understand the young person's condition and its impact on their life at school.

If you're a parent or young person, please share this guide with your school. We also have lots of useful information for parents onour website and for young people here.

About the Guide for Schools

This guide outlines the key elements of support.

You'll also find useful information on seizure types, triggers, treatments and first aid, keeping accurate seizure records, and emergency medication.

The guide has information on how epilepsy can impact on young people's learning, emotions and behaviour.

The guide also includes an overview on the different legal framework and guidance for each UK nation relating to medical conditions, disability and education, and special educational needs.

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This guide is for people who work in schools or other educational settings.

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Group Training Checklist - Midazolam Administration

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Group Training Checklist - Midazolam Administration

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The International League Against Epilepsy (ILAE) Classification of the Epilepsies has been updated to reflect our gain in understanding of the epilepsies and their underlying mechanisms following the major scientific advances that have taken place since the last ratified classification in 1989.

It presents three levels, starting with seizure type, where it assumes that the patient is having epileptic seizures as defined by the new 2017 ILAE Seizure Classification. After diagnosis of the seizure type, the next step is diagnosis of epilepsy type, including focal epilepsy, generalized epilepsy, combined generalized, and focal epilepsy, and also an unknown epilepsy group. The third level is that of epilepsy syndrome, where a specific syndromic diagnosis can be made. The new classification incorporates etiology along each stage, emphasizing the need to consider etiology at each step of diagnosis, as it often carries significant treatment implications.
ILAE Classification of the epilepsies (2017)
Translations: Arabic | French | Georgian (PowerPoint) | Italian | German | Japanese | Norwegian | Portuguese (Portugal) | Portuguese (Brazil) | Spanish | Ukrainian

Commentary: A new classification is born (2017). Sameer M. Zuberi and Emilio Perucca
Classification of the Epilepsies Powerpoint

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ILAE Classification of the Epilepsies (2017)

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The International League Against Epilepsy (ILAE) Classification of the Epilepsies has been updated to reflect our gain in understanding of the epilepsies and their underlying mechanisms following the major scientific advances that have taken place since the last ratified classification in 1989.

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Do you know what to do if someone has a seizure? Complete this short online learning module to find out more.

It covers: absence, atonic, focal, myoclonic, tonic and tonic-clonic seizures.

This training is free as part of our commitment to improving life for all those affected by epilepsy.

If you have valued using this training consider a donation to Epilepsy Action - thank you.

Share

Let others know that you have done this training and help to raise awareness about epilepsy. You can use links below to share.
Share on Facebook Share on Twitter
Learn more

You can find out more about different types of seizure by visiting the advice and information pages on the Epilepsy Action website.

Other first aid products from Epilepsy Action

There is more information about first aid for seizures available from our online shop:

Epilepsy Action is the working name of British Epilepsy Association, a registered charity in England and Wales (No. 234343) and a company limited by guarantee (No. 797997) in England.

Registered Office: New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY, United Kingdom

Main office: +44 (0)113 210 8800

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What to do when someone has a seizure | Epilepsy Action Learning

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Do you know what to do if someone has a seizure? Find out in our quick e-learning module.

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Join the #UnderstandMyEpilepsy campaign and help ensure young people with epilepsy get the support they need to be safe and included at school.

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A Scottish charity developing videos showing play and child-friendly information to prepare children and parents for hospital.

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Yesterday, we received the following letter from Julie Hicklin, Manchester City Council's SEND Lead, wishing all parents & carers of children and young people with Special Educational Needs and/or Disabilities (SEND) the very best for the Christmas holidays and the coming year.

The local authority

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The Parent Champions are parents who have experienced and/or know about the range of services and support available through the Local Offer. They are well-placed to tell other parents about the Local Offer and the help and support that's out there. Parents

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Contact - Charity for Families with Disabled Children

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Contact - Charity for Families with Disabled Children

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Contact - for families with disabled children | Contact

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We are Contact, the charity for families with disabled children. We support families, bring families together and help families take action for others.

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Epilepsy awareness for schools | Epilepsy Action Learning

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Course overview This free online course is designed for people working in schools. It gives you a basic introduction to epilepsy. If you’re a school leader, teacher or responsible for special educational needs, the course Epilepsy for teachers is for you. Updated | September 2020 To be reviewed | S…

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Individual Training Checklist - Buccal Midazolam

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Individual Training Checklist - Buccal Midazolam

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EpilepsyDiagnosis.org

The ILAE welcomes you to EpilepsyDiagnosis.org, a cutting edge online diagnostic manual of the epilepsies.

Goal

The goal of epilepsydiagnosis.org is to make available, in an easy to understand form, latest concepts relating to seizures and the epilepsies. The principle goal is to assist clinicians who look after people with epilepsy anywhere in the world to diagnose seizure type(s), epilepsy type, diagnose epilepsy syndromes and define the etiology of the epilepsy. The site is principally designed for clinicians in primary and secondary care settings caring for people with epilepsy and we hope will also serve as a useful teaching aid.

Structure

The structure of this site reflects the importance of seizure type, epilepsy type, syndrome, and etiology in clinical practice. On this website, you will find current classification concepts for seizures, with their clinical features, video examples, EEG correlate, differential diagnosis and related epilepsy type, epilepsy syndrome and etiology. Epilepsy syndromes are detailed by their clinical features, seizure types, EEG, imaging and genetic correlates and differential diagnoses. The site includes sections on etiologies of epilepsies and epilepsy imitators with cross-referencing between these sections and seizure and syndrome sections.

Videos

A short and instantaneous registration process is required to view videos on this site, and this is open to anyone, anywhere in the world with an internet connection. Individuals with seizures or epilepsy imitating conditions and their families have kindly given consent for videos to be freely available in this way.

Further development

You will notice that there are some sections that do not have video examples as yet, notably Epilepsy Imitators, and some text sections that require expansion. The ILAE will continue to develop EpilepsyDiagnosis.org and add further videos and text over time.

Please have a look EpilepsyDiagnosis.org, use it for your own education, for teaching and let colleagues, patients and families know about the resources on this site. We would be very grateful if you could complete the survey on the Give Feedback page. This will help us in our further development of this continually evolving site. Future plans include developing continuing medical education (CME) packages linked to the site and providing downloadable information for people with epilepsy, their families and carers.

Acknowledgement

The website has been developed in partnership with eResearch at the University of Melbourne, Australia.

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The International League Against Epilepsy (ILAE) Diagnostic Manual's goal is to assist clinicians who look after people with epilepsy to diagnose the epilepsy syndrome and (if possible) the etiology of the epilepsy. Arriving at the correct epilepsy syndrome and/or etiology allows better decision-making about treatment and improves patient care.

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This page explains what buccal midazolam is, how it is administered and what training is needed for care workers.

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Epilepsy Society | Transforming lives through advocacy, research and care

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We are the UK’s only charity transforming the lives of people with epilepsy through world-leading research, advocacy and care.

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Epilepsy for teachers | Epilepsy Action Learning

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Course overview This is a free online course aimed at school leaders, teachers and staff responsible for special educational needs/additional learning needs. It may also be useful for teaching assistants working directly with children with epilepsy. The course covers everything included in our Epile…

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Individual Training Checklist - Rectal Paraldehyde

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Individual Training Checklist - Rectal Paraldehyde

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Convulsive Status Epilepticus APLS Algorithm

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Convulsive Status Epilepticus APLS Algorithm

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Children with special educational needs and disabilities (SEND)

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Children with special educational needs (SEN) can get the help they need to get an education - SEN support, education, health and care plans, SEN before September 2014

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K vita is an alternative dietary management for drug-resistant epilepsy. Discover how K.vita can help patients with epilepsy here.

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The Daisy Garland charity supports children in the UK with drug-resistant epilepsy. Funding ketogenic dietitians, life-saving monitors and providing vital family support.

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DfE Supporting Pupils at School with Medical Condtions 2015

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DfE Supporting Pupils at School with Medical Condtions 2015

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Joint Council for Qualifications - Reasonable Adjustments & Special Consideration

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Joint Council for Qualifications - Reasonable Adjustments & Special Consideration

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Access Arrangements are pre-examination adjustments for candidates based on evidence of need and normal way of working. Access Arrangements fall into two distinct categories: some arrangements are delegated to centres, others require prior JCQ awarding body approval.

Access Arrangements allow candidates/learners with special educational needs, disabilities or temporary injuries to access the assessment without changing the demands of the assessment. For example, readers, scribes and Braille question papers. In this way Awarding Bodies will comply with the duty of the Equality Act 2010 to make 'reasonable adjustments'.
Reasonable Adjustments
The Equality Act 2010 requires an Awarding Body to make reasonable adjustments where a disabled person would be at a substantial disadvantage in undertaking an assessment.

A reasonable adjustment for a particular person may be unique to that individual and may not be included in the list of available Access Arrangements.

How reasonable the adjustment is will depend on a number of factors including the needs of the disabled candidate/learner. An adjustment may not be considered reasonable if it involves unreasonable costs, timeframes or affects the security or integrity of the assessment.

There is no duty on the Awarding Bodies to make any adjustment to the assessment objectives being tested in an assessment.
Special Consideration
Special Consideration is a post examination adjustment to a candidate's mark or grade to reflect temporary injury, illness or other indisposition at the time of the examination/assessment.

Forms

Within this section you will find JCQ forms for Access Arrangements, Reasonable Adjustments and Special Consideration.

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Access Arrangements, Reasonable Adjustments and Special Consideration - JCQ Joint Council for Qualifications

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Access Arrangements are pre-examination adjustments for candidates based on evidence of need and normal way of working. Access Arrangements fall into two distinct categories: some arrangements are delegated to centres, others require prior JCQ awarding body approval. Access Arrangements allow candidates/learners with special educational needs, disabilities or temporary injuries to access the assessment without changing the demands of the assessment.

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Children's Epilepsy Transition Contact Sheet 

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Children's Epilepsy Transition Contact Sheet 

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Children's Epilepsy Contact Sheet Transition 2022

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This guideline covers the period before, during and after a young person moves from children's to adults' services. It aims to help young people and their carers have a better experience of transition by improving the way it's planned and carried out. It covers both health and social care.

The Care Quality Commission uses NICE guidelines as evidence to inform the inspection process.

Recommendations

This guideline includes recommendations on:

Who is it for?

Health and social care providers

Health and social care practitioners in children's and adult health, mental health and social care services

Other practitioners working with young people who use health and social care services, for example, those working in education and employment agencies

Young people using heath or social care services who may need support from adults' services in the future, and their parents or carers

Commissioners should ensure that any service specifications take into account the recommendations in this guideline and the NICE quality standard on transition from children's to adults' services.

Guideline development process
How we develop NICE guidelines
Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.

Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

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Transition from children's to adults' services for young people using health or social care services

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This guideline covers the period before, during and after a young person moves from children's to adults' services. It aims to help young people and their

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​ Read the answers to the most frequently asked questions about the Ready Steady Go Transition programme

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Kooth.com is commissioned by the NHS, Local Authorities, charities and businesses to provide anonymous and personalised mental health support for Children and Young People

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Close

Getting advice

This means receiving info and guidance on what activities or services are available in your community - to help you manage your emotional wellbeing. This might be a particular sport that you have an interest in, a hobby or services that can help you with any general emotional issues you may be dealing with. We may also do some 1-1 work with you to show you how you can better manage your emotional health.

Close

Getting help

This means that you might need to be supported into more targeted interventions to help support any issues that you may be dealing with. These interventions will be short but effective in improving your emotional wellbeing.

Close

Getting risk support

This means that sometimes we will have to contact crisis services to keep you safe before you can get the right help.

Close

Getting more help

This means that we need to talk to other more specialised services - we can then discuss with them and yourself which type of help is the best for you, that cannot be given at our hubs.

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Close This means receiving info and guidance on what activities or services are available in your community - to help you manage your emotional wellbeing. This might be a particular sport that you have an interest in, a hobby or services that can help you with any general emotional issues you may be dealing with.

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Manchester Mind - Independent local mental health charity

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Our purpose is to support better mental health for all. We believe that everyone deserves to be supported in their mental health.

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42nd Street’s vision is for inclusive, accessible mental health and wellbeing support and opportunities for all young people.

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Welcome to The Hub - READ ME FIRST! - The Hub

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Welcome to The Hub, this is your space to talk about all things epilepsy. Use Whether you are a young person who has questions about living with epilepsy and how it is affecting you, you want to ask others how they deal with different situations, or you want to come and share your story. The Hub i…

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Featured

About The Epilepsy Space

The Epilepsy Space is for 16-25 year olds to help you manage your epilepsy. It was created with young people.

Find out more

Fighting to improve lives

Help raise vital funds and join the fight for a future where no young person has to face life with epilepsy alone.

Learn more

This website uses cookies to improve your experience. We'll assume you're ok with this, but you can opt-out if you wish. Cookie settings ACCEPT

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"The Epilepsy Space: created by young people for young people aged 16-25, to help with managing epilepsy. Learn more about epilepsy and connect with others"

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We are here to make sure that the 99,000 seriously ill children and their families across the UK can make the most of every moment they have together, whether that's for years, months or only hours.

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There are at least three epilepsy-related deaths a day in the UK.

SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy. We are the only UK charity specialised in supporting and involving people bereaved by epilepsy.

Our services include bereavement support, counselling, help with understanding the inquest process and in collaboration with UK research teams, the involvement of bereaved families and professionals in research through the Epilepsy Deaths Register.

If you have been affected by an epilepsy death, please contact our support team on 01235 772852.

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There are at least three epilepsy-related deaths a day in the UK. SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy. We are the only UK charity specialised in supporting and involving people bereaved by epilepsy.

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Emerge CAMHS 16-17 CMFT - Royal Manchester Children’s Hospital

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Manchester University NHS Foundation Trust Sites - Royal Manchester Children’s Hospital

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2023  Community Gap Analysis against NICE Guidance

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2023  Community Gap Analysis against NICE Guidance

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Transition of Healthcare for Adolescents and Young Adults-MFT

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Transition of Healthcare for Adolescents and Young Adults-MFT

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Transition from child into adult healthcare (2023)The Inbetweeners

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Transition from child into adult healthcare (2023)The Inbetweeners

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The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) reviews clinical practice and identifies potentially remediable factors in the practice of patient care.

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Developmentally Appropriate Healthcare Toolkit 

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Developmentally Appropriate Healthcare Toolkit 

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Northumbria Healthcare NHS Foundation Trust

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Skip to main content Skip to accessibility tools

A toolkit to support delivery of "Developmentally Appropriate Healthcare" in the NHS

What is this NHS toolkit about, and who is it for?

This toolkit gives practical suggestions about how healthcare can be tailored to young people's needs as they develop and change through adolescence into young adulthood - such care is termed 'Developmentally Appropriate Healthcare' - or DAH.

The toolkit is designed to support everyone working in the NHS, from clinicians to chief executives, to promote the health of young people and to play their part in making healthcare work for this age group.
Click here to access the toolkit.

Find out more about Developmentally Appropriate Healthcare and the Transition research programme findings

The Transition research programme disseminates information about Developmentally Appropriate Healthcare and Transition and we would be happy to send you updates.

We would also be interested to hear what you think about the toolkit and how you are using it in your trust.

Please send us your information by completing this form:

If you would prefer, you can email your information to transition@ncl.ac.uk

About Developmentally Appropriate Healthcare

Developmentally Appropriate Healthcare (DAH) recognises the changing biopsychosocial developmental needs of young people and the need to empower young people by embedding health education and health promotion in consultations. In operational terms DAH focuses on the approach of healthcare providers to engage with each young person and their carers alongside the structure of the organisations in which care takes place.

The NIHR funded Transition research programme

Providing health services that support effective and successful transition of young people with long term conditions from childhood to adulthood is an NHS priority. A programme of research funded by the NIHR has focused on the question of how health services can do this effectively. A key finding of this research is the need to provide Developmentally Appropriate Healthcare for all young people from 10-24 years.

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Developmentally Appropriate Healthcare Toolkit :: Northumbria Healthcare NHS Foundation Trust

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Skip to main content Skip to accessibility tools A toolkit to support delivery of "Developmentally Appropriate Healthcare" in the NHS This toolkit gives practical suggestions about how healthcare can be tailored to young people's needs as they develop and change through adolescence into young adulthood - such care is termed 'Developmentally Appropriate Healthcare' - or DAH.

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Hospital care for young people with a learning disability-mencap

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Hospital care for young people with a learning disability-mencap

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Making choices

Moving from children's services to adult services is called transition Transition means changing from one thing to another. Transition sometimes means things like when you change from having children's social care to adult social care. . Adult services are different from children's services and you may have more choices on the care you receive and the decisions that you are able to make.

Treat Me Well

Treat Me Well is our campaign to transform how the NHS treats people with a learning disability in hospital. Find out what we're calling for and how you can help.
Find out more

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Hospital care for young people with a learning disability

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Moving from children's services to adult services is called transition Transition means changing from one thing to another. Transition sometimes means things like when you change from having children's social care to adult social care. . Adult services are different from children's services and you may have more choices on the care you receive and the decisions that you are able to make.

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Together for short lives Transition to Adult Service Pathway 

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Together for short lives Transition to Adult Service Pathway 

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We know that the population of young people with life-limiting or life-threatening conditions is growing and that young people are living longer with increasingly complex health conditions. It is therefore vital that services keep pace and support these young people to live their lives to the full. Whilst palliative care will be a key part of their experience of transition to adult services, what is most important is that they are able to live well with their complex health conditions.

This pathway is written for professionals, predominantly for those working in children's and adult hospice and palliative care services, but also for any professionals who are supporting young adults with life-limiting conditions and their families, whether they work in health, social care, education or other settings. We hope that it will also be a useful tool for commissioners to support the planning and funding of multi-agency transition pathways for local populations of young people with complex health needs.

It aims to provide a generic framework that can be adapted locally to plan multi-agency services for young people with life-limiting or life-threatening health conditions as they are growing up and moving into adult service provision. Multi-agency working involves services in the statutory, voluntary and independent sectors, as well as those employed directly by the young person and their family through direct payments. We hope that it can be used as an overarching transition framework across agencies and be used in conjunction with other pathways and guidelines developed for specific conditions or particular settings.

This new edition of the Stepping Up Transition Pathway for 2023 builds on previous editions and has been updated to include new service examples from projects that were funded through our Improving Transition for Young People Programme, which was led by Together for Short Lives from 2017-2022. It is updated with new evidence and to reflect developments in transition for young people with life-limiting or life-threatening conditions.

We hope that you will find this pathway a useful tool. If you have any comments or suggestions or would like support in its implementation, please do contact us.

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Transition to Adult Services Pathway from Together for Short Lives

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This pathway provide a generic framework that can be adapted locally to plan multi-agency services for young people with life-limiting or life-threatening health conditions as they are growing up and moving into adult service provision.

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Shared Decision Making NICE Guidance NG197

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Shared Decision Making NICE Guidance NG197

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This guideline covers how to make shared decision making part of everyday care in all healthcare settings. It promotes ways for healthcare professionals and people using services to work together to make decisions about treatment and care. It includes recommendations on training, communicating risks, benefits and consequences, using decision aids, and how to embed shared decision making in organisational culture and practices.

The guideline does not cover unexpected emergencies in which immediate life-saving care is needed. It also does not cover situations when, at the time a decision needs to be made, an adult does not have mental capacity to make a decision about their healthcare. For more information, see the NICE guideline on decision-making and mental capacity.

Recommendations

This guideline includes recommendations on:

Who is it for?

Everybody who delivers healthcare services

Commissioners of health and public health services

Adults (aged 18 and over) using healthcare services, their families, carers and advocates, and the public

It may also be relevant for:

Social care practitioners

Voluntary, community and social enterprise organisations

People who use social care services

Guideline development process
How we develop NICE guidelines
This guideline updates and replaces recommendations on shared decision making in NICE's guideline on patient experience in adult NHS services: improving the experience of care for people using adult NHS services (CG138, February 2012).

Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.

Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

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This guideline covers how to make shared decision making part of everyday care in all healthcare settings. It promotes ways for healthcare professionals and

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Decision-making and mental capacity NG108

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Decision-making and mental capacity NG108

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This guideline covers decision-making in people 16 years and over who may lack capacity now or in the future. It aims to help health and social care practitioners support people to make their own decisions where they have the capacity to do so. It also helps practitioners to keep people who lack capacity at the centre of the decision-making process.

This guideline should be read in conjunction with the Mental Capacity Act 2005. It is not a substitute for the law or relevant Codes of Practice.

It does not cover Deprivation of Liberty Safeguards processes.

Recommendations

This guideline includes recommendations on:

Who is it for?

Health and social care practitioners working with people who may (now or in the future) lack mental capacity to make specific decisions

Independent advocates, with statutory and non-statutory roles

Practitioners working in services (including housing, education, employment, police and criminal justice) who may come into contact with people who lack mental capacity

People using health and social care services who may (now or in the future) lack mental capacity to make specific decisions, as well as their families, friends, carers and other interested parties

Guideline development process
How we develop NICE guidelines
Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.

Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.

Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

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This guideline covers decision-making in people 16 years and over who may lack capacity now or in the future. It aims to help health and social care

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Home - 10 Steps Transition to adult services

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Mental Capacity Act and Liberty Protection Safeguards

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Mental Capacity Act and Liberty Protection Safeguards

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As your child approaches adulthood, you will need to think about the shift towards their legal status as decision-makers and your role as parent/ parent carer in supporting them to make decisions.

The Mental Capacity Act

In England and Wales

In England and Wales, professionals and families should be aware of the legal implications of the Mental Capacity Act (MCA) (2005).

The MCA applies to everyone involved in the care, treatment and support of people aged 16 and over who are unable to make all or some decisions for themselves.

The MCA is designed to protect and restore power to those vulnerable people who lack capacity.

The MCA also supports those who have capacity and choose to plan for their future - this is everyone in the general population who is over the age of 18.

The MCA encourages everyone to assume a person has capacity. If they are found to lack capacity, the person most directly involved in their care, such as a family member, will continue to make decisions in that person's best interests and involve their relative when doing so. Best interests decisions should take into account all the things that the person who lacks capacity would consider important, if they were able to make the decisions themselves. The Act states that anyone over 16 years of age must be assumed to be competent to make their own decisions and that they must be given any support they need from professionals in order to do so.

Power of Attorney (LPA) is legal documentation that lets anyone over 18 years of age appoint a person to decide matters on their behalf. It is made in preparation for the future, before a loss of capacity. If an individual is not competent to make their own decisions, and does not have an LPA, professionals will make decisions on their behalf, on the basis of "best interests". In this situation, whilst family members will be consulted on their views, these are not legally binding and treatments/ interventions not felt to be medically appropriate cannot be demanded. This process can be very challenging for families.

If your child over the age of 16 years lacks capacity to make decisions about their healthcare, the responsibility for making best interests decisions sits with the health care team looking after them unless you have been appointed as a personal welfare deputy. The court will usually only appoint a personal welfare deputy if:

there's doubt whether decisions will be made in someone's best interests, for example if the family disagree about care

someone needs to be appointed to make decisions about a specific issue over time, for example where someone will live

A deputyship is a last resort when you lose decision-making capacity, and no one has the legal authority to do it on your behalf.

Without an LPA or a personal welfare deputy, the appointed decision-maker from the healthcare team must involve your son or daughter in the decision-making process and you can support this by sharing what you know about their preferences and wishes. You will always have a vital role in keeping your son or daughter involved in all the decisions made in their life.

At all times, the five principles of the Mental Capacity Act must be observed:

1. Everyone is believed to have capacity to make decisions unless it can be proved that they do not.

2. All appropriate help and support must be given to a person to help them make a decision before it is decided that they are unable to.

3. A person should not be treated as unable to make a decision just because the decision they make is unwise or unusual.

4. Any act or decision made on behalf of a person who lacks capacity must be done or made in their best interests.

5. Before any act or decision is made, regard must be given as to whether it could be achieved any other way which maintains their basic rights and freedom of action.

It is important to think about these changes in the law as your son or daughter approaches adulthood and in good time so that plans can be made in good time. A useful guide for families and carers on the Mental Capacity Act is available here.

In Scotland

The Adults with Incapacity (Scotland) Act 2000 provides the statutory framework for the medical treatment of incapacitated adults, from the age of 16. You can read a short guide to this Act here.

In Northern Ireland

Decision-making is governed by the common law and the Northern Ireland Assembly under the 2016 Mental Capacity Act. Information on the Act is available here.

If you have concerns about how the Mental Capacity Act will impact on you as a family and your future decisions, do speak with a member of your care team.

Liberty Protection Safeguards

The Liberty Protection Safeguards provide protection for people aged 16 and above who are, or who need to be, deprived of their liberty in order to enable their care or treatment, and who lack the mental capacity to consent to their arrangements.

The Liberty Protection Safeguards were introduced in the Mental Capacity (Amendment) Act 2019 and will replace the Deprivation of Liberty Safeguards (DoLS) system. There are some key changes made including the introduction of 3 assessments that form the basis of the authorisation of Liberty Protection Safeguards and greater involvement of families. The scheme has also been extended to include 16 and 17 year olds.

You can read more about the Mental Capacity Act, Liberty Protection Safeguards and transition to adult services in our Stepping Up Guide.
Click here to download a PDF of this resource.

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The Mental Capacity Act and Liberty Protection Safeguards - Together for Short Lives

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As your child approaches adulthood, you will need to think about the shift towards their legal status as decision-makers and your role as parent/ parent carer in supporting them to make decisions. The Mental Capacity Act In England and Wales In England and Wales, professionals and families should be aware of the legal implications of [...]

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Lasting Powers of Attorney and Deputyship

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Lasting Powers of Attorney and Deputyship

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Lasting Powers of Attorney and Deputyship

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When your son or daughter approaches adulthood you may want to think about applying for Lasting Powers of Attorney in order to make sure that the process is in place for making decisions on their behalf if they lose the capacity to do so. This factsheet also explains what happens when a court appoints a Deputy.

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The Daisy Garland is a charity working exclusively for children and families whose lives have been touched by drug-resistant epilepsy.  Set up in 2004 in memory of our daughter, Daisy, The Daisy Garland provide positive support for some of the 18,000 children in the UK who s…

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If your child has been diagnosed with GLUT1 deficiency syndrome* the ketogenic diet may be a life-time treatment.

* A rare genetic disorder that impairs brain metabolism. GLUT1 (a protein) is responsible for the transport of glucose (a sugar) from the blood into the brain. Glucose is the main source of fuel for the brain; a shortage of glucose leads to impairment of brain function and growth.

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What types of food will my child be able to eat? Your child will still be able to eat a variety of different foods on the ketogenic diet. This list is a good starting point and it will expand as you become more comfortable and adventurous with recipes.

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The Really Useful Ketogenic Diets Book, a user-friendly guide packed with essential information, is now available as a handy online resource. Written and produced by The Daisy Garland, the guide is designed for families in the UK whose children are following the ketogenic diet - a medical-led treatment used to treat drug-resistant epilepsy. We would stress that under no circumstances should the ketogenic diet be undertaken without the permission of your neurologist and close guidance and support of a specialist ketogenic dietitian.

The book is broken down here into six easy-to-follow sections which guide the user through the fundamental stages of considering, starting and maintaining the ketogenic diet. It also features advice from families already using the diet, invaluable tips and hints and answers frequently asked questions. For a downloadable and printable copy please click on the purple bar below.
Click here to print The information contained in this publication is not permitted to be reproduced, in whole or in part, without prior written permission from The Daisy Garland charity.

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Parents of children with epilepsy are pleasantly surprised at the vast array of healthy food options their child can eat on the ketogenic/Low-GI Diet Read more

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The Really Useful Ketogenic Diets Book, a user-friendly guide packed with essential information, is now available as a handy online resource. Written and produced by The Daisy Garland, the guide is designed for families in the UK whose children are following the ketogenic diet - a medical-led treatment used to treat drug-resistant epilepsy.

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The Daisy Garland charity supports children in the UK with drug-resistant epilepsy. Funding ketogenic dietitians, life-saving monitors and providing vital family support.

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Our parent support group, Daisy's Keto Café, is a buzzy, interactive café accessed via our Facebook page. This closed, private group is a discussion forum exclusively for the keto families we support: a safe place to share thoughts, discuss worries, exchange ketogenic recipes and ask advice from other keto parents. Our Daisy Ketogenic Nutritionist, Judy, is always on hand too, her help and keto related advice is invaluable.

So, whether you need a tempting new recipe for tea, want to share a good day, an achievement, milestone or simply want to let off steam to others who understand our Café is open 24/7.

Be assured, Daisy's Keto Café is an invitation only group, your comments will not be seen by non-members.

If your child is on the ketogenic diet in the UK under the care of an NHS dietitian, Daisy's Keto Café is the place to be! Click on the link below to request an invitation to join!
DAISY'S KETO CAFÉ
Here's what some of our families say about Daisy's Keto Café -

If you don't have a Facebook account you can still contact us by email or telephone. We're here to help!

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Parents of children with epilepsy are pleasantly surprised at the vast array of healthy food options their child can eat on the ketogenic/Low-GI Diet Read more

# data[].attributes.attachment_link.description
Our parent support group, Daisy's Keto Café, is a buzzy, interactive café accessed via our Facebook page. This closed, private group is a discussion forum exclusively for the keto families we support: a safe place to share thoughts, discuss worries, exchange ketogenic recipes and ask advice from other keto parents.

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Roald Dahl's Marvellous Children's Charity provides specialist nurses and support for seriously ill children. There are currently over 120 Roald Dahl Nurses caring for over 33,000 seriously ill children across the UK. We also provide support in other ways, helping to improve the resilience of families who find life very tough.

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roald dahl's marvellous children's charity

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roald dahl's marvelous children's charity

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children with long term chronic conditions

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As a UK wide charity, we believe that every seriously ill child deserves a Roald Dahl Specialist Nurse.

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Roald Dahl's Marvellous Children's Charity

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Roald Dahl’s Marvellous Children’s Charity

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Roald Dahl Specialist Nurses are a vital lifeline to the children and their families, supporting them clinically and emotionally

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Roald Dahl's Marvellous Children's Charity

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Roald Dahl’s Marvellous Children’s Charity

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News articles about the Roald Dahls Charity

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Evaluation Form for study sessions August 2024

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Individual Health Care Plan without Midazolam

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Individual Health Care Plan without Midazolam

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Care plan - Individual Health Care plan without midazolam

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Individual health care plan with Midazolam 

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Individual health care plan with Midazolam 

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Care Plan - lndividual Health care plan with midazolam 2023

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Rescue Treatment Training PowerPoint August 2024

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Rescue Treatment Training PowerPoint August 2024

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Rescue Treatment Training Powerpoint Sept 2023

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Children's Epilepsy Surgery Service in England

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Children's Epilepsy Surgery Service in England

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Around 340 children in England could benefit from epilepsy brain surgery each year. The aim of surgery is to completely stop seizures or to significantly reduce the number of seizures the child has.

For children who can have epilepsy brain surgery, it is a more effective treatment than taking epilepsy medicine.

The Children's Epilepsy Surgery Service (CESS) in England is a specialist service that aims to improve access to epilepsy brain surgery for children with difficult to control epilepsy.

It does this by working with other NHS services to ensure children who could benefit are referred. The service then assesses each child's suitability for epilepsy surgery.

Each CESS centre has an expert team of children's epilepsy specialists, neurosurgeons, and other healthcare professionals. These teams have the specialist knowledge and skills needed to assess and treat children who are suitable for epilepsy brain surgery.

The CESS is funded by NHS England for children with epilepsy in England. There are 4 specialist CESS centres that will treat children from all over England, not just those in their local area.

Here is a video of some children talking about their epilepsy surgery.

The CESS centres

Birmingham Children's Hospital NHS Foundation Trust

Great Ormond Street Hospital for Children NHS Foundation

Trust and King's College Hospital NHS Foundation Trust, London

Department of Paediatric Neurology, Bristol Royal Hospital for Children

The Northern Children's Epilepsy Surgery Services (NorCESS) Alder Hey Children's NHS Foundation Trust (Liverpool) and Royal Manchester Children's Hospital (Central Manchester University Hospitals NHS Foundation Trust)

Although CESS is funded by NHS England, it will also treat children who live in Wales but are registered with a GP in England. And they will provide services for children or families in Scotland, Wales or Northern Ireland if their child lives or goes to school in England.

Other children from Wales and Northern Ireland will be referred to the CESS centres for assessment. This is arranged on an individual basis by the local consultant paediatrician or neurologist.

This information looks at what is involved before, during and after epilepsy brain surgery. If your child is already being considered for surgery, the CESS centre will be able to give you more information and answer any questions you have.

Contact details for the CESS centres

Steelhouse Lane
Birmingham
B4 6NH
Tel: 0121 333 9999

Department of Paediatric Neurology
Level 6 Research & Education Centre
Upper Maudlin Street
Bristol
BS2 8AE
Tel: 0117 342 0897

Great Ormond Street
London
WC1N 3JH
Tel: 020 7405 9200

Denmark Hill
London
SE5 9RS
Tel: 020 3299 9000

The Northern Children's Epilepsy Surgery Services (NorCESS) is a joint service between Alder Hey Children's NHS Foundation Trust (Liverpool) and Royal Manchester Children's Hospital (Central Manchester University Hospitals NHS Foundation Trust)

Eaton Road
West Derby
Liverpool
L12 2AP
Tel: 0151 228 4811

(Central Manchester University Hospitals NHS Foundation Trust)
Hathersage Road
Manchester
M13 0JH
Tel: 0161 276 1234 or 0161 701 5072

Types of epilepsy brain surgery for children

There are many different types of epilepsy brain surgery. The type your child has depends on their type of seizures, and where the seizures begin in their brain. Here are some of the more common types:

Focal resection

This is done when surgeons know which part of the brain the seizures start in. Children having this type of surgery have a small part of their brain removed. Although this sounds worrying, the surgeon will only take away damaged parts that aren't needed.

If the part of the brain causing the seizures is in the temporal lobe, the surgery is called a 'temporal' resection. If the part of the brain causing the seizures is in one of the other lobes, it is called an 'extra-temporal' resection.

Corpus callosotomy

During this surgery the 2 hemispheres (halves) of the brain are separated. It is mainly used for generalised seizures, particularly frequent drop attacks ( tonic and atonic seizures), and myoclonic seizures that affect the whole body. It is also used for severe focal seizures that start in one hemisphere and spread to the other.

Hemispherectomy / hemispherotomy

This is major surgery to remove or separate (disconnect) one half of the outer layer of the brain from the other. It is for children who have seizures because one half of their brain is badly damaged or not working properly.

Removing one hemisphere is called 'hemispherectomy'. Sometimes the hemisphere is not removed, but completely disconnected from the rest of the brain. This is called hemispherotomy.

Tests before epilepsy brain surgery for children

To find out if your child will be suitable for surgery, the epilepsy team at the CESS centre will thoroughly assess them.

As part of the assessment, they will ask for your child to have a number of tests, which could include:

What happens on the day of surgery?

Your child will be very carefully prepared for surgery in the operating theatre. They will be put to sleep with a general anaesthetic.

Altogether, this part of the operation may take up to 2 hours.

What happens during surgery?

What happens during surgery will depend on the type of surgery the child is having. Most children will have a small cut made in their skull, so that the surgeon can see their brain. The surgeon may then remove some bone.

On rare occasions, and only usually in children older than 12 years, the surgeon may wake the child up during part of the operation. This is done so that they can find the part of the brain that controls language and movement. The surgeon will explain to your child why this happens. Afterwards, the bone is replaced and fixed to the skull for healing.

Most epilepsy brain surgery takes at least 4 to 6 hours, and sometimes longer.

What happens after surgery?

After their surgery, your child:

Will have a swollen and painful head and face from a few days to 2 weeks. One or both eyes may be swollen and difficult to open

Will need to take painkillers for a few days

Will need to rest and relax for a few weeks, but gradually become more active

Will probably stay away from school for a few weeks, but most children are back by 6 weeks. This should be discussed with your child's surgery team

Shouldn't play contact sports for at least 4 to 6 months

Most children will need to stay in hospital for around 7 to 10 days following surgery. The amount of time can vary depending on the type of surgery. Some children may have to stay in hospital for longer whilst they recover.

Your CESS centre will give you advice about caring for your child once they leave hospital.

Below are some general guidelines for activities parents commonly ask about:

Hair washing

You can usually wash your child's hair before they leave hospital. This might be with the support of the ward nurses. Depending on your CESS centre's practice, this is likely to be between 3 and 7 days after their surgery.

It will also depend on the type of stitches used. The advice is only to use shampoo and no other hair products, such as conditioner, until the wound has completely healed. Hot hair dryers and straighteners should be avoided initially. Your epilepsy nurse will be able to advise you further.

Returning to school

This is very much decided on an individual basis but may be up to a few weeks. It is recommended that going back to school starts off slowly - usually with a visit and then gradually building up from a couple of hours to full time. Most children are likely to be back by 6 weeks after surgery. If your child returns before then, they should avoid any outdoor play until 6 weeks after surgery.

Leisure activities (excluding contact sports)

Your child can go back to their usual activities between 6 and 12 weeks after surgery. Please discuss this further with your surgeon or epilepsy surgery specialist nurse practitioner.

Contact sports

While your child should avoid contact sports in the initial post-surgery recovery period at home, they can usually go back to them between 6 and 12 months after surgery. Some surgeons are happy for this to start earlier. It is very important to discuss this with your surgeon and epilepsy surgery specialist nurse practitioner as this can vary depending on the contact sport.

Swimming

Because of the risk of infection, it is important your child avoids swimming for 6 weeks following surgery. When they start swimming again, it is very important that their usual measures for having epilepsy and being safe in the water are in place.

Flying

If you are planning to fly soon after your child's surgery, it is important to discuss this with their surgeon or epilepsy surgery specialist nurse practitioner. Your child may require an x-ray to check they are safe to fly and might need a fit-to-fly letter before being able to travel.

After surgery care

Once your child leaves hospital, their care will be shared between the CESS centre and the doctor who referred them for surgery.

Epilepsy medicine after surgery

Your child will usually need to continue taking their epilepsy medicine for between 6 months and 2 years after their epilepsy surgery. The decision about reducing or stopping it will depend on whether or not they are still having seizures, and your thoughts and feelings.

If their medicine is reduced, this will be done gradually. You will be told how to do this and will be supported during the process.

Follow-up appointments

Your child's local healthcare team will:

Arrange follow-up appointments to check their progress after surgery

Keep in touch with your child, possibly for several years after surgery

Arrange any development, emotional, behaviour or local services your child needs

Success rates for brain surgery in children

Many children will no longer have seizures following their epilepsy surgery. Across all the surgery types, around 6 in 10 children will be seizure free after 5 years. Once a child has been seizure free for 5 years, it's rare for their seizures to come back.

The success rate varies between the different types of surgery. Hemispheric surgery is the most effective in stopping seizures, followed by temporal lobe resection and then extra-temporal lobe resection.

For children whose epilepsy is caused by some damage or other problem in a specific part of the brain, over 7 in 10 could stop having seizures after surgery.

Benefits and risks

The tests and assessments done before epilepsy surgery are very thorough. They are to make sure that the benefits of surgery are higher than the risk of any complications.

The main benefits are stopping or significantly reducing seizures. But successful epilepsy surgery may also have other benefits, such as:

Being able to stop or reduce epilepsy medicines and their side effects

Improved quality of life

The risks depend on the part of the brain being operated on. You will be able to discuss these with the surgery team before the final decision is made about surgery for your child.

Here are some possible risks:

Complications from surgery

As with any major surgery, there is a small risk of infection or bleeding. If there are any complications from surgery, this could mean your child will need to stay in hospital longer than expected.

Memory problems

The temporal lobes handle memory and language, so any surgery on the temporal lobes can cause problems with remembering, understanding and speaking. The memory problems can be for things that a child has seen ('visual memory') or for things that a child has heard ('auditory or verbal memory').

More seizures than before

Cutting the connections between the 2 hemispheres (sides) of the brain in corpus callosotomy stops seizures spreading from one hemisphere to the other. But it doesn't stop all the seizures, only the drop attacks. In fact, some children may have more focal (partial) seizures, but they are less severe.

Visual symptoms

After removing one hemisphere of the brain in hemispherectomy, a child's vision might be affected for a few days or weeks. Their vision might be reduced, or they might have double vision. They might also have some problems with their peripheral vision. This could be temporary or permanent, depending on how much of the brain has been removed.

One-sided paralysis

After hemispherectomy or hemispherotomy, a child may have limited use of one side of their body. This paralysis is called a 'hemiparesis' or 'hemiplegia'. Physiotherapy and occupational therapy can help children affected with this.

Behaviour problems

Some children may have had behaviour problems before the surgery. Or they may have had problems communicating or relating to other people. Epilepsy surgery itself will probably not help these problems. It is even possible that a very few children will have worse problems than before.

Referral to a CESS centre

The National Institute for Health and Care Excellence (NICE) says that children with epilepsy should have regular reviews of their epilepsy and treatment. At their review, or if they are having problems with their epilepsy at any other time, they may be referred to a CESS centre.

This is most likely if:

An MRI scan shows that there is some damage or other problem in a specific part of the brain or

Initial treatment with epilepsy medicines does not result in a seizure free period of six months

The CESS centre will look at the information in the referral and should accept it if the child has any of these things:

Severe epilepsy that started in the first few years of life, and is thought to come from a single part of their brain

A magnetic resonance imaging (MRI) brain scan which has shown an abnormality in one or more parts of the brain. An example might be a benign tumour or a hypothalamic hamartoma

Focal epilepsy (also called partial epilepsy) that has not been controlled with 2 epilepsy medicines, used either singly or together. These children may, or may not, have an abnormality on an MRI scan

A weakness down one side of the body (hemiplegia) and epilepsy that has not been controlled with 2 epilepsy medicines, used either singly or together

Sturge-Weber syndrome or Rasmussen's syndrome

Drop attacks

Tuberous sclerosis complex (TSC) with epilepsy that has not been controlled by 2 epilepsy medicines, that have been used either singly or together

Support and services

The centre your child is referred to will make sure you and your child have access to the support and services listed below. This includes during the assessment, before, during and after their surgery:

The chance to visit the CESS centre and meet the surgery team before surgery

Support for your family for the time when your child is in hospital

A child-friendly environment with toys, books and activities that are right for your child

A management plan agreed with you and your child. This should include details about follow-up care, and the monitoring and review process

A named doctor or healthcare professional who will coordinate your child's care and act as a link between you and the people treating your child

Access to a member of the team for advice, information and support 24 hours a day

Access to an epilepsy specialist nurse

You will also be given clear information about your child's condition including:

A description of their epilepsy

How their epilepsy will be managed

Medicines and other treatments they might receive

How you and your child can get the best from their treatment

Emotional and behavioural support

Details of patient support groups and charities

Contact details for your child's named nurse

Download our info on children's surgery

Sign up for the latest updates from Epilepsy Action

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Children's Epilepsy Surgery Service in England (CESS) - Epilepsy Action

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The Children's Epilepsy Surgery Service (CESS) in England is a specialist service that aims to improve the quality of epilepsy brain surgery available for children

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A Scottish charity developing videos showing play and child-friendly information to prepare children and parents for hospital.