How to live more safely with epilepsy

…Someone at risk from  Seizures, Convulsions or breathing  difficulties?  Epilepsy Safety Anti-Suffocation Pillows Protects THEM while they sleep –  and gives YOU peace of mind! Some important suggestions for From Don Alderton, Pharmacist  a Member of the Royal Pharmaceutical Society KEY CONTENTS:  • The Management of Sleep-Seizure Risk – A Harm Prevention Guideline • Evidence for the Effectiveness of Sleep-Safe Anti-Suffocation Pillows • How Sleep-Safe Anti-Suffocation Pillows Work • MHRA Urges Caution in Switching Epilepsy Drugs • Quality Health Checks for People with Learning Disabilities A Family Company,   run by Healthcare Professionals, focussed on Healthcare Integrity. Connect with us!    @sleepsafepillows     #sleepsafepillows 34 th Anniversary Sleep-Safe Products 1992-2026  Living More Safely with Epilepsy www.sleep-safe.co.uk A normal pillow BLOCKING the nose   and mouth Essential for anyone who is ‘at risk’ For children and young people… For older people… For people of all ages with special needs… Anti-Suffocation Pillows from www.sleep-safe.co.uk  Anti-Suffocation Pillows www.sleep-safe.co.uk Sleep-Safe pillows WON’T BLOCK the  nose and mouth 34  Anniversary 1992-2026 th Airflow THROUGH the Sleep-Safe pillow  AND AROUND the nose and mouth 2 Contents Here is your Sleep-Safe Anti-Suffocation Pillow  Pg 4 The Management of Sleep-Seizure Risk —   Pg 6  A Harm Prevention Guideline  Evidence for the Effectiveness of Sleep-Safe   Pg 10  Anti-Suffocation Pillows  Accreditation Outcomes Achieved from the   Pg 14  Effectiveness Test Results  How Sleep-Safe Anti-Suffocation Pillows Work  Pg 15 MHRA Urges Caution in Switching Epilepsy Drugs  Pg 19 Quality Health Checks for people with Learning Disabilities  Pg 20 Expressions of Support for Anti-Suffocation Pillows  Pg 21 Who Else is Using Sleep-Safe Anti-Suffocation Pillows?  Pg 22 What Parents and Carers say about Sleep-Safe  Pg 23  Anti-Suffocation Pillows Some Frequently Asked Questions about Sleep-Safe  Pg 25  Anti-Suffocation Pillows  Brief Biographies of Don and Chris Alderton  Pg 26 Information in this booklet summarises published research and guidance and is not intended as individual medical advice.  Anti-Suffocation Pillows from www.sleep-safe.co.uk 3 Here is your Sleep-Safe Anti-Suffocation Pillow Made in a workshop dedicated to providing products and services which help people with long-term medical conditions manage their lives more effectively. The email shipping advice we sent you has many useful links to focussed information specially selected to ‘signpost’ you towards help in the day-to-day management of seizure conditions. These can all be viewed online at www.sleep-safe.co.uk/signposts  In the 30+ years since Sleep-Safe were introduced they have been improved continually – much softer, a more gently rippled surface, a smoother micromesh cover, and the unique Aero-Matrix core. These developments originated mostly from ideas suggested by the users and carers, and mean increased comfort and breathability, and, of course, even greater safety. The latest improvements provide significantly increased ‘Breathability’: “What you can  See-Through, you can Breathe-Through” along with a ‘Take-Apart’ design: if a ‘slimmer’ pillow is preferred, perhaps for child or a smaller adult, the Aero-Matrix core can be removed easily; also, if the Sleep-Safe becomes heavily contaminated it can be taken apart and the components  washed separately. Do please pay particular attention to the washing and laundering instructions! Along with this booklet I’ve also enclosed some other resources: A 28 page ‘Patient and Carer’ focussed booklet providing relevant information from the 154  page Online NICE Clinical Guideline NG 217 ‘Epilepsies in children, young people and adults’.  (The 154 page Online Guide is a long read which contains detailed guidance for everyone in the epilepsy care pathway: consultants, GPs, epilepsy nurses, patients…). This to help decide on a plan to manage the condition and to increase confidence about living with epilepsy. If you live outside the UK it will give you some idea of what is happening in the UK with regard to managing epilepsy. Anti-Suffocation Pillows from www.sleep-safe.co.uk 4 Credit-card sized ‘I Have Epilepsy’ fold-out leaflets describe what action to take in the event of a seizure and provide key first aid information. They should be filled out with personal details and an emergency contact and are designed to be carried at all times personally or given to a carer, a colleague, a child’s teacher or to a health or social care professional. A ‘Yellow Card’ which describes how to report medicine side effects easily: people with epilepsy can sometimes experience unpleasant effects from their medicines, and every side effect that’s notified may help to ensure more effective management of seizures for people with epilepsy. There is now a ‘Yellow Card’ app. The Yellow Card Scheme, introduced in 1964 in the wake of the Thalidomide disaster, has now moved into the digital age. Among many other features it enables instant reporting of side effects directly to the Yellow Card Scheme. Full information and a download links here: https://yellowcard.mhra.gov.uk/ A ‘Taking Medicines’ leaflet which is in a jargon-free question and answer format gives further information about drug side effects. The information included with Sleep-Safe Pillows is based on the best available evidence but isn’t a substitute for discussions with your neurologist, epilepsy nurse or specialist of the underlying condition which causes the seizures affecting you or the person for whom you care. This should result in better informed management of the condition, minimising the risk of harm and reducing stress, anxiety and emergency hospital admissions. A Sleep-Safe Anti-Suffocation Pillow, replaced at appropriate intervals – say every 18 months - amounts to a lifetime investment in safety and security for just a few pence a day, giving greater hope and a better life for people with epilepsy and their families. Do please let me know if there is any further information that you need. Best wishes, Yours sincerely, Don Alderton BSc (Hons) Pharmacy P.S. If you find that you have a spare Sleep-Safe leaflet I should be grateful if you would pass it on to somebody who suffers from seizures, or to their carer, or to a health or social care worker – you may help to save a life. Many thanks! Anti-Suffocation Pillows from www.sleep-safe.co.uk 5 The Management of Sleep-Seizure Risk — A Harm Prevention Guideline Introduction This guideline provides a framework for the management of sleep-seizure suffocation risk in children and adults. Its objective is to limit the incidence of dangerous events by anticipatory provision of medical devices and by creating systems that are better able to eliminate the risk. Breathing and adequate airflow is fundamental to a person’s well-being. There is a positive duty at common law to care for and provide such treatment as is in the individuals’ best interests, and this duty of care includes the provision of support to preserve life. The aim of sleep-seizure suffocation management is to ensure that airflow during a sleep-seizure is sufficient to maintain life. Sleep-seizure suffocation occurs when a person becomes entrapped into bedding which obstructs the nose and mouth and results in oxygen deficiency. This can lead to death, or brain damage and subsequent lifelong disability and dependency. Seizures are both a consequence and a cause of ill health, and increase a person’s vulnerability to further disease and disability. In the UK each year there are about 1,100 seizure related deaths, and the 44,000 unplanned emergency admissions resulting from seizures cost Primary Care Organisations an estimated £150 million. Many of these result from the fear engendered by a sleep seizure – has a brain injury occurred? Is the individual near death? Effective management of sleep-seizure suffocation risk has the potential to substantially contribute to key delivery  Anti-Suffocation Pillows from www.sleep-safe.co.uk targets for social and healthcare organisations. It provides an opportunity to strengthen and improve performance in the following NHS Outcomes Framework Domains which focus on improving health and reducing health inequalities: • Domain 1 – Preventing People from Dying Prematurely. • Domain 2 – Enhancing Quality of Life for People with Long-Term Conditions. • Domain 5 – Treating and caring for people in a safe environment and protecting them from avoidable harm. This guideline focuses on the key recommendations for identifying people at risk and the indications for, and provision of, support in the community, whether that is supported housing, sheltered schemes, care  homes or ‘at home’ in a domestic setting. 6 An important aim of the guideline is to improve the understanding among care managers of the causes, management and consequences of sleep-seizure risk. It provides guidance on correctly identifying people across all social and healthcare settings who require support, and also on the means of delivering it. It is recognised that ‘person centred’ care is essential and that individuals should have the opportunity to make informed decisions about their care and treatment in partnership with those who are responsible for their care.  The importance of good communication and  a coordinated approach between social and healthcare workers across departmental boundaries in community settings is also identified as being key. At-risk groups include  people who are at risk of  having seizures: • while they are asleep, or while they are not conscious as a result of medication and therefore unaware of personal danger • while they are conscious but lack mental capacity to be aware of personal danger • while they are conscious and aware of personal danger but do not have the physical ability to remove themselves from that danger. Organisation of sleep-seizure suffocation management Care managers should ensure that people at risk of sleep-seizure suffocation receive co-ordinated care from the multidisciplinary team in the community. All social and healthcare care workers who are directly  Anti-Suffocation Pillows from www.sleep-safe.co.uk involved in care provision should be made aware of the importance of providing adequate sleep-seizure suffocation management. The team should ensure that appropriate support in the form of medical devices and interventions is delivered in order to help prevent death or brain damage. Protocols and care pathways for support should be developed, along with education and training initiatives to ensure that all health and social care workers understand the importance of the prevention of sleep- seizure suffocation in patient care. Education and training should cover: • Screening for sleep-seizure  suffocation risk • Indications for sleep-seizure  suffocation management • Sleep-seizure suffocation  management in practice • Monitoring • Supporting people in the community • Key priorities for implementation Screening for sleep-seizure suffocation risk Sleep-seizure suffocation management should be implemented for people who have a history of seizures, and also for people who  have, or who have had, conditions that pre- dispose them to seizure onset but who have not yet suffered seizures. 7 The Management of Sleep-Seizure Risk — A Harm Prevention Guideline Early identification of people who are at risk of sleep-seizure suffocation, or who are at risk of becoming so, is vital in order to provide timely help and prevention. This is not a stand-alone procedure, and should be used to provide a reliable baseline for future reference for further on-going episodes of care. The outcome of screening should be recorded in the individual’s notes. Sleep-seizure suffocation screening should be undertaken in patients on discharge from hospital into supported housing, sheltered schemes, care homes and domestic settings  in the community. Screening should be  repeated periodically, and should also be considered at other opportunities, for example, health checks, flu injections, and also when there is clinical concern, for example, stroke or head injury following a fall. All individuals with learning disabilities should have an annual medical examination. Indications for sleep-seizure suffocation management The aim of sleep-seizure suffocation management is to ensure that breathing and airflow during a sleep-seizure is sufficient to maintain life. Care managers should ensure that people having sleep-seizure suffocation management, and their carers, are kept fully informed about the management of their condition. They should also have access to appropriate information and be given the opportunity to discuss diagnosis and treatment options. Anti-Suffocation Pillows from www.sleep-safe.co.uk Sleep-seizure suffocation management in practice In order to achieve the aim of preventing death or brain damage by suffocation during sleep-seizures, a number of measures should be implemented: • Sheets and blankets should be of the lightest possible weave • blanket clips should be used to attach sheets and blankets to mattress welting or to a bed or cot frame to ensure that bedding remains in position during  normal movement and seizures thus  reducing the likelihood of entrapment and suffocation • domestic pillows containing down, feathers or hollofibre all have extremely low breathability and should be replaced by registered medical devices such as anti-suffocation pillows. On no account should plastic, polythene or close weave cotton pillow cases be used. Adaptations and medical devices are an aid in the management of medical conditions in which suffocation is a risk; they are not a substitute for the “duty of care”. Standards of nursing and social care and vigilance appropriate to the individual’s condition should be maintained. 8 Monitoring Monitoring is important to ensure that sleepseizure suffocation management is being  provided safely and effectively, and to detect  and manage clinical complications as early  and effectively as possible. The type and  frequency of monitoring will depend on the  nature and severity of the seizures affecting  the individual and the underlying disease  state. Supporting people in the community The prevalence of sleep-seizure suffocation  is increasing year on year, as more people survive congenital and developmental disabilities to live longer and as more elderly people survive strokes, falls and age-related disabilities. All people in the community who have a history of seizures or who have conditions that pre-dispose to seizure onset should have sleep-seizure suffocation management, whether they live in supported housing, sheltered schemes, care homes or domestic settings, and should be supported by the multidisciplinary team of social and healthcare workers. Anti-Suffocation Pillows from www.sleep-safe.co.uk Key priorities for implementation Training There should be clear documentation that  all staff caring for people who suffer from sleep-seizures have the necessary work competencies commensurate with their role in the caring process. Screening and care plans There should be evidence that a clear process  for sleep-seizure suffocation screening is in place; that outcomes of screening are being  documented, and that preventive care plans  are developed for (a) people who have a history of seizures and (b) people who have, or who have had, conditions that pre-dispose to seizure onset but who have not yet suffered seizures. Implementation of protective measures People identified as having a history of  seizures and also people who have conditions that pre-dispose to seizure onset but who have not yet suffered seizures should have protective measures implemented to ensure their clinical well-being in respect of maintaining sufficient breathing and airflow to maintain life during sleep-seizures. Review There should be evidence of periodic reviews  undertaken to update procedures and protocols relating to the sleep-seizure care pathway and the process of sleep-seizure suffocation screening and management. Review dates should be set for replacement  of bedding and medical devices used in  the management of the condition such as monitors and anti-suffocation pillows. 9 Evidence for the Effectiveness of Sleep-Safe  Anti-Suffocation Pillows Report Prepared for: DM Alderton BSc (Hons) Pharmacist Report Prepared by: Dr Alison McConnell, Professor of Applied Physiology,  Respiratory Physiology Research Group, Brunel University Professor McConnell’s research group has published the most influential research on the ergogenic effects of inspiratory muscle training; she invented and commercialised the first ‘breathing training’ product for use by sports people and is widely credited as the creator of the ‘breathing training’ product category. Summary:  To determine as a primary outcome the effectiveness of various domestic pillows in permitting respiratory airflow for patients experiencing breathing difficulties during a seizure. To establish proof of the effectiveness of Sleep-Safe pillows; however a ‘Gold Standard’ Randomised Controlled Trial (‘an RCT’) in the usual sense could not be conducted due to ethical constraints. An RCT is a study in which a number of similar people are randomly assigned to two or more groups to test a specific drug, treatment or other intervention. This type of trial involves comparing the outcome of treating two matched populations of patients with a product that is thought to be effective with a product that is known to be ineffective (a ‘placebo’). Comparing the incidence of an ‘end-point event’ between the two populations enables a judgement to be made about the effectiveness of the product which is thought to be effective. In the case of an anti-suffocation pillow the ‘end-point event’ is suffocation. However, testing directly for suffocation would cause discomfort to many of the trial patients and a worsening of condition or even death for particularly vulnerable patients. As such, ‘breathability’ – the capability of a material to allow air to be transmitted at a rate sufficient to maintain life – was used as a proxy for evaluating the anti-suffocation effectiveness of Sleep-Safe pillows. Nonetheless, an exhaustive search failed to locate an academic or commercial organisation that was responsive to performing this work. Fortunately, while working in a community pharmacy I was asked to supply a POWERbreathe device and I reasoned that the inventor might be in interested in helping to resolve this problem. The manufacturer agreed to forward my enquiry to the inventor, Professor Alison McConnell, who in turn agreed to test the breathability of the Sleep-Safe pillow. In the tests a variety of pillow types were evaluated to establish their breathability airflow  capability using the normal human lung inspiratory pressure as a baseline. The results showed  that the most commonly used domestic pillows did, in fact, cause significant restriction to airflow, whereas the Sleep-Safe pillow did not.  These results provided credible evidence for Sleep-Safe to be publicised to health and social care professionals. Anti-Suffocation Pillows from www.sleep-safe.co.uk 10 Evidence for the Effectiveness of Sleep-Safe  Anti-Suffocation Pillows Note: Sleep-Safe Products had no role in the test design, data collection, data interpretation or writing of this report. Based on these test results, Sleep-Safe Pillows should be the choice in circumstances where breathing ability is compromised by disability, disease state, medication or age. Test conditions: The products were tested under “blind” conditions with all identifying marks removed. This ensured that any variance in performance could be accepted as being due entirely to product difference rather than due to operator bias. A 4kg block with holes to emulate nostrils was used to simulate an adult human head positioned face down into a pillow. The flow rate selected to measure the resistance of each pillow was 0.3 l.sec Anti-Suffocation Pillows from www.sleep-safe.co.uk -1 , which corresponds to the typical mean inspiratory flow rate during tidal breathing (approximately 500ml inhaled in 1.5 sec). For pillows B and D, this flow rate generated no measurable pressure load, so two higher   and 3.0 l.sec flow rates were tested in order to produce a figure for the resistance of these pillows (1.0 l.sec -1 ). These higher flow rates are not physiologically relevant for a resting human, but it is conceivable that a person experiencing a seizure might undergo an increased metabolic and ventilatory demand resulting in a mean inspiratory flow rate in the region of between 1.0 l.sec  and 3.0 l.sec -1 . Procedure: The equipment was set to generate the desired flow (measured with a flow meter  at the exhaust) whilst drawing air through each pillow. The pressure load generated at the fixed flow rate was recorded on two occasions at 20 sites on each pillow. The resistance of the pillow was calculated as follows.  4kg simulated adult human head Pressure transducer Pillow Low resistance tube Air flow Pump Sleep-Safe Breathability and Airflow surpasses the British Standard: Sleep-Safe breathability has been tested with a 4kg reproduction `head’  to simulate adult inspiratory flow. The British Standard test only simulates ` infant’ breathing. Flow meter -1 -1 11 Evidence for the Effectiveness of Sleep-Safe  Anti-Suffocation Pillows Summary data: Table 1 summarises the data collected. Each value is the mean of the twenty sites measured for each pillow on two occasions. Table 1 Resistance (cmH Resistance (cmH 0.l.sec) Pillow 0.3 l.sec 2 The resistance of the non-woven cover per sec, was circa 1 cmH Anti-Suffocation Pillows from www.sleep-safe.co.uk 2 0 at 3.0 l.sec . There was a tendency for pillow resistance to increase with flow rate (see Pillow B). This effect  would not be observed in, for example, a fixed orifice (pressure load would rise with flow rate, but the proportionality is preserved such that the resistance remains relatively constant). This increasing resistance is most likely due to the compressible nature of the test material, which is squeezed closer together at higher flow rates, thus increasing its resistance. The site of measurement (1-20) did not influence the resistance systematically. However, there was a ‘random’ effect of site with pillow D, which was influenced by the location of the holes and bumps in the material. There was a tendency for resistance to be lower at sites where the ‘airway’ tube (the tube that was placed on the pillow surface and through which the air was drawn) was placed over a hole. The presence of the non-woven cover appeared to reduce this resistance even further. Conclusions: Pillows A and C have a relatively high resistance at 0.3 l.sec -1  (typical inspiratory flow rate for a resting human). The pressure load imposed would require breathing effort and inspiratory muscle force output to increase in the region of 3 and 10 times normal respectively (the pressure load imposed by the elastance and flow resistance of the respiratory system is in the region of 5cmH 2 2 0.l.sec) = pressure load generated (cmH -1 0) flow rate through the pillow l.sec 1.0 l.sec -1 A 53.3 - B 0 3.6 18.7 C 16.7 - D 0 0 1.12 D + non-woven cover 0 0 1.44 3.0 l.sec -1 O). Pillow A would certainly impair resting breathing, and pillow B would very likely impair resting breathing, especially in those with inspiratory muscle weakness, and/or increased work of breathing due to disease.   2 -1 ) -1 12 Evidence for the Effectiveness of Sleep-Safe  Anti-Suffocation Pillows Both pillows A and C would impair breathing at raised inspiratory flow rates, e.g., during a seizure. It is clear that at resting tidal flow rates (0.3 l.sec Anti-Suffocation Pillows from www.sleep-safe.co.uk -1 ), pillows B and D have negligible resistance and the resistance of pillow D was not increased significantly by the addition of the non-woven cover. At the higher flow rates that might be associated with a seizure (1.0 – 3.0 l.sec -1 ), the resistance of pillow B would increase the demand for inspiratory force output by 1 to 4 times, which, as stated above, may be sufficient to impair breathing in some patients. In contrast, the resistance of pillow D is negligible at both test conditions (with and without the non-woven cover), even at the highest flow rate tested. Indeed, it is unlikely that an additional load of less than 1.5 cmH 2 O would even be detectable. Interpretation: Pillows A and C would present significant resistance to breathing in healthy adults, and would be unsuitable for use by people with breathing difficulties such as would occur during a seizure or convulsion. Pillow B would present significant resistance to breathing in adults with medical conditions  where breathing difficulties were of an intermittent or unpredictable nature such as would occur during a seizure or convulsion. Pillow D would present no significant resistance to breathing in healthy adults and adults where breathing difficulties were of an intermittent or unpredictable nature. The use of a non-woven cover would not impede the effectiveness of pillow D. Based on these test results, Pillow D should be the choice in circumstances where breathing ability is compromised by disability, disease state, medication or age.  Table 2  Pillow Description Pillow Identities (Revealed after the tests were completed) A Domestic Feather + Down B Glued Foam (CP) C Domestic Hollowfibre D Sleep-Safe Pillow D + non-woven cover Sleep-Safe Pillow + non-woven cover 13 Accreditation Outcomes Achieved from the Effectiveness Test Results United Kingdom Conformity Assessed The test results are among the evidence accepted by the Medicines and Healthcare products Regulatory Agency (MHRA) in granting UKCA Accreditation to the Sleep-Safe pillow. UKCA indicates that the Sleep-Safe Anti-Suffocation pillow is a Class I Medical Device registered at the Medicines and Healthcare products Regulatory Agency (MHRA) and conforms to the requirements of the Medical Devices regulations as amended 2024.  It is an implicit declaration that the Sleep-Safe pillow complies with all UK laws and applicable British conformity assessment procedures. Subsequent to these results, and in a unique adjudication, HM Customs and Excise issued a VAT Liability Ruling that authorises Sleep-Safe pillows to be supplied Free of VAT to qualifying persons: ‘You should note that this ruling only covers the particular anti- suffocation pillow  produced by Sleep-Safe.’ Anti-Suffocation Pillows from www.sleep-safe.co.uk VAT  Zero Rated ✓✓ These accreditations provide support for Sleep-Safe pillows to be publicised to health and social care professionals. 14 How Sleep-Safe Anti-Suffocation Pillows Work See the ‘How Sleep-Safe Pillows Work’ video at www.sleep-safe.co.uk A normal pillow BLOCKING the nose and mouth Sleep-Safe pillows WON’T BLOCK the nose and mouth Airflow  THROUGH the Sleep-Safe pillow  AND AROUND the nose and mouth • Sleep-Safe permits breathability through the entire pillow, not just through a mesh cover… • Sleep-Safe does not contain fibre pads, memory foam, feathers, down or other fillings will  which impede breathability through the entire body of the pillow… • Sleep-Safe is made from open cell materials with a gently rippled surface which enables  maximum airflow and breathability… Anti-Suffocation Pillows from www.sleep-safe.co.uk What a Canadian  mother says…  “My son was admitted to the Foothills Hospital Seizure Monitoring Unit here in Calgary. They showed me a video one of the seizures in the middle of the night. My son turns his head to the right side at the onset of his seizures. I watched the video of my son laying on his right side, turning his head to the right, with his face directly in to the pillow. Of course, this was alarming! But even as I was watching, I knew he was OK because he was sleeping with Sleep-Safe pillows  that I recently purchased from your company. When my son was admitted to hospital, I brought his Sleep-Safe pillows to the hospital, because now that I have them, I no longer feel comfortable with him sleeping with any other pillows.” You can ‘see’ the breathability: Hold the Sleep-Safe pillow up to a light source.   15 ‘What you can See Through, you  can Breathe Through’ Hypoallergenic Open Cell Foam permits a very controlled diffusion of air and moisture vapour, which ‘wicks’ perspiration away from the skin. Hypoallergenic Micromesh Pillow Cases permit maximum breathability across the entire surface of the pillow. Anti-Suffocation Pillows from www.sleep-safe.co.uk 16 Sleep-Safe is a ‘dynamic’ pillow with unique advantages • Airflow and breathability through the whole depth, sides and ends of the pillow • The built-in ‘Aero-Matrix’ pump construction eliminates exhaled breath and carbon dioxide The Sleep-Safe pillow is made from soft, highly porous foam with an open-cell structure and has three components: • A breathable, micromesh pillow case • Two gently rippled Aero-Profile surfaces each with numerous Thru-Channels to facilitate  plentiful airflow and breathability • An inner core with multiple Aero-Matrix chambers The outer micromesh pillow case and the rippled Aero-Profile pillow faces permit air flow across the entire surface of the pillow. The rippled Aero-Profile pillow faces and inner core are held in proximity by a wide-mesh pillow case which permits maximum airflow and breathability. Anti-Suffocation Pillows from www.sleep-safe.co.uk 17 This enables the Thru-Channelling of the pillow faces and the Aero-Matrix chambers to ‘work together’: • Any head movement compresses and decompresses the core Aero-Matrix chambers, causing air to flow through the sides and ends of the pillow and the Thru-Channelling, and to pass around the face and help prevent suffocation • Air is able to flow throughout the whole depth of the pillow, and through the sides and ends of the pillow • This propels exhaled breath and carbon dioxide away from the user’s nose and mouth This means that Sleep-Safe is a ‘Dynamic’ pillow with unique advantages that help to prevent suffocation… Hypoallergenic Micromesh Pillow Cases – these are  dye-free to minimise the risk of severe allergies which could trigger seizures in susceptible people. Hypoallergenic Open Cell Foam - Not Latex Foam, which can cause allergies, Not Memory Foam, which can trap heat and also compress and impede airflow and breathability. Protects THEM while they sleep –  and gives YOU peace of mind! Anti-Suffocation Pillows from www.sleep-safe.co.uk UK made from UK sourced materials UK Hand-made in a disability workshop UK University lab tested for effectiveness UK Product Safety and Fire Regulations compliant UK Government Registered Class I Medical Device Hypoallergenic Manufacture - no adhesives or welding chemicals are used in making Sleep-Safe pillows,  this means that there are no volatile ‘leftovers’ to  cause allergic reactions, asthma attacks or breathing  difficulties. Easily washable - the `Take-Apart' Benefit: Sleep-Safe can be washed and dried in one piece or taken apart and the components washed separately. This means that any soiling and house dust mites and airborne particles which cause allergic reactions or breathing difficulties can be washed out of the entire pillow in a single wash. Reduces stress and anxiety - Sleep-Safe help to reduce greatly the ‘carer anxiety’ of sleep seizures – the  fear of suffocation. This helps to put people affected by seizures back in control of their lives by relieving  a significant cause of family stress, so that managing the condition which is causing the seizures becomes much  less demanding.  Not just for epilepsy, but also for the management of seizures caused by most conditions that disrupt the normal functioning of the brain. These include the ongoing effects of congenital and developmental conditions such as Down’s syndrome, Dravet Syndrome, cerebral palsy and autism spectrum disorder, also acquired brain injury following falls, vehicle accidents and assaults and the aftermath of meningitis, stroke and brain tumour. 18 MHRA Urges Caution in Switching Epilepsy Drugs Switching between different manufacturers’ epilepsy drugs could cause patients to have seizures or suffer other side effects, the Medicines and Healthcare Products Regulatory Agency has warned. The MHRA split anti-epileptic drugs into three categories, based on the risk of harm from switching. Patients on the four medicines that fall into category one – phenytoin, primidone, phenobarbital and carbamazepine – should be maintained on a specific manufacturer’s product, the MHRA said. Clinicians should exercise caution when prescribing the drugs that fall into category two, which include valproate, rufinamide and clonazepam. The decision to switch patients on these drugs should be based on clinical judgement and consultation with the patient or carer, “taking into account factors such as seizure frequency and treatment history”, the MHRA advised. It was “usually unnecessary” to stick to a particular manufacturer when prescribing the seven category three medicines such as gabapentin and lacosamide, the MHRA ruled. But it advised clinicians to be mindful of specific concerns such as patient anxiety and risk of confusion and dosing errors. Anti-Suffocation Pillows from www.sleep-safe.co.uk The medicines watchdog urged healthcare professionals to exercise caution when switching their patients between drugs, after a review by the Commission on Human Medicines found patient harm “could not be completely ruled out” in some cases. A review by the Commission on Human Medicines found patient harm when switching patients between epilepsy drugs “could not be completely ruled  out”. Siu Ping Lam, the MHRA’s acting director of licensing, said: “The categories of anti-epileptic drugs are designed to help healthcare professionals decide upon whether it is necessary to maintain continuity of supply of a particular manufacturers’ product.” “If patients have any concerns about, or problems with, their anti-epileptic medicine, they should speak to a healthcare professional such as a doctor, pharmacist or nurse.” The three categories: •  Category one medicines: Phenytoin,  Carbamazepine, Phenobarbital, Primidone •  Category two medicines: Valproate, Lamotrigine, Perampanel, Retigabine, Rufinamide, Clobazam, Clonazepam, Oxcarbazepine, Eslicarbazepine, Zonisamide, Topiramate •  Category three medicines: Levetiracetam, Lacosamide, Tiagabine, Gabapentin, Pregabalin, Ethosuximide, Vigabatrin 19 Quality Health Checks for people with Learning Disabilities (from Public Health England, which exists to protect and improve the nation’s health and wellbeing, and reduce health inequalities. It is an executive agency of the Department of  Health, with operational autonomy to advise and support government, local authorities and the NHS in a professionally independent manner). A way of finding out what is happening locally at your doctors’ surgery… Having a health check every year with the doctor can help people with learning disabilities find out if they have any health  problems they need help with. It is a good way of helping people to  stay healthy. The government has been paying doctors to do health checks for people with learning disabilities who are also known to social services. But we know that there are lots of people who still haven’t had a heath check. We have written a quality checking tool. This can be used to find out what is  happening about health checks locally. It can be used by parents and carers,   learning disability nurses, doctors, health quality checkers, other staff and Partnership Boards, to: •  find out about the good things that are happening •  find out if health checks are happening in the same way locally •  find out if things are changing and getting better •  help family doctors and staff make changes so that people with learning disabilities can use services better. These changes are called ‘reasonable adjustments’. Anti-Suffocation Pillows from www.sleep-safe.co.uk There are 6 questions: For 5 of the questions there are 3 ‘levels of  success’ – bronze, silver or gold. If a service is marked as gold this means they  are doing really well. We have suggested some things that can be  looked at to tell how well the surgery is doing at annual health checks. You can read and download the Quality Health Checks Audit Tool here… Google / search on ‘People with learning disabilities: health checks audit tool’.  Annual health checks - Learning disabilities Anyone aged 14 or over who is on their  doctor’s learning disability register can have a free annual health check once a year. Google / search on ‘Annual health checks - learning disabilities’. Disability Rights – UK Government Services, Guidance, News: Google / search on ‘UK Government Disability Rights’ Citizens Advice – What Counts as a Disability: Google / search on ‘Citizens Advice – What  Counts as a Disability’ 20 Expressions of Support for Anti-Suffocation Pillows 1. Personal “My son was admitted to the Foothills Hospital Seizure Monitoring Unit here in Calgary. They showed me a video one of the seizures in the middle of the night. My son turns his head to  the right side at the onset of his seizures. I watched the video of my son laying on his right side, turning his head to the right, with his face directly in to the pillow. Of course, this was alarming! But even as I was watching, I knew he was OK because he was sleeping with Sleep-Safe pillows that I recently purchased from your company. When my son was admitted to hospital, I brought his Sleep-Safe pillows to the hospital, because now that I have them, I no longer feel comfortable with him sleeping with any other pillows.” Richard E Appleton Consultant Paediatric Neurologist Alder Hey Children’s Hospital Liverpool MRCS LRCP, MB BS, DCH, MA (Oxon) FRCP, FRCPCH 3. Academic “In patients with recognized higher SUDEP risk, prevention measures should be suggested, such as the use of anti-suffocation pillows.” ‘Sudden unexpected death in epilepsy (SUDEP)  and sleep’. Published in Sleep Medicine Reviews, Volume 15, Issue 4, August 2011, Pages 237-246 Lino Nobili, Paola Proserpio,   Guido Rubboli, Nicola Montano, Giuseppe Didato, Carlo A. Tassinari. Anti-Suffocation Pillows from www.sleep-safe.co.uk 2. Clinical Richard E Appleton “Anti-suffocation pillows are likely to significantly reduce the  risk of suffocation in children (and even adults) who experience frequent nocturnal seizures and particularly if these nocturnal seizures are tonic-clonic (also called Grand Mal) seizures. There is no evidence that the use of an anti-suffocation pillow will completely stop the possibility of a child (or adult) not suffocating during a tonic-clonic seizure, but it is likely these pillows will greatly reduce the risk of suffocation. It would therefore be reasonable, if not wiser, to consider using an anti-suffocation pillow in any child (or adult) who is know to experience nocturnal tonic-clonic seizures.” Provided to Sallieann Gould, Founder of the Epilepsy Sucks Charity and used with permission. 21 Who Else is Using Sleep-Safe Anti-Suffocation Pillows? Leading health and social care providers in the UK and overseas which are providing Sleep-Safe Anti-Suffocation Pillows to protect their patients with epilepsy and other seizure disorders include: Young Epilepsy (formerly The National Centre for Young People with Epilepsy) - the UK’s leading provider for children and young people aged 5 to 25 with complex  epilepsy and other neurological conditions Charing Cross Hospital - referral centre for neurosurgery which houses the serious injuries centre for west London Merseycare NHS Foundation Trust - 40 community units housing people with learning disabilities Cornwall Partnership NHS Trust - 107 community units housing people with  learning disabilities United Response - 40+ community units supporting people with learning disabilities, mental health needs and physical disabilities Also… (not a complete list) Herts Partnership NHS Foundation Trust, Solihull Care Trust, the States of Guernsey Health and Social Services, Bath & West Community NHS Trust, Central Lancashire PCT, Northgate & Prudhoe NHS Trust, Derbyshire County PCT, Hampshire Partnership NHS Trust, Northumberland Care Trust, Oldham Community Health Services, Hertfordshire County Council Adult Care Services, Somerset County Council, Barnardo’s, BUPA, SENSE, the leading UK charity supporting deaf-blind people… …and hundreds of individual private purchasers with seizure disorders. USA: About 1 in 10 of all Sleep-Safe pillows are supplied to care provider organisations and individuals in the United States. France: A further 1 in 10 of all Sleep-Safe pillows are supplied to the   French Social Services and Epilepsy Societies.  400 Sleep-Safe Pillows supplied to Association ASPEC Le village du Perche 230 Sleep-Safe Pillows supplied to Centre Médical de La Teppe Specialising in Epilepsy 160 Sleep-Safe Pillows supplied to U G E C A M home for people with epilepsy 60 Sleep-Safe Pillows supplied to “Castelnouvel” home for children with epilepsy 60 Sleep-Safe Pillows supplied to Association EPI  home for children with epilepsy 50 Sleep-Safe Pillows supplied to Maison d’Ulysse Order of Malta for adults with autism Anti-Suffocation Pillows from www.sleep-safe.co.uk European Union 200 Sleep-Safe Pillows supplied to the European Union Dravet Syndrome Foundation Kenya 60 Sleep-Safe Pillows supplied to Children with Special Needs Support, Kisumu, Kenya 22 What Parents and Carers say  about Sleep-Safe Anti-Suffocation Pillows When my son was admitted to hospital, I brought his sleep-safe pillows to the hospital, as now that I have them, I no longer feel comfortable with him sleeping with any other pillows. I think that it is a wonderful thing that your company is supplying. I have given your information to the Foothills Hospital Seizure Monitoring Unit here in Calgary, Alberta, Canada and they are very interested in advertising to future patients. It surprised me that they had not seen pillows like this before. I hope that I can help you save lives! Thank you for your wonderful product! I don’t know how my son ever did without them. Thank you very much for your prompt response to my order. It was very nice reading about you and your family and your son’s positive achievements. It has made us feel  more positive about our daughter, who is struggling with seizures at the moment. We have got 4  daughters - our 14 year old has never had any of the usual childhood ailments like tonsillitis, ear infections etc. and suddenly in April last year she started having seizures. She was diagnosed with epilepsy in December and has got progressively worse since April this year. We are in the process of changing her medicine and your letter has given us hope for her future. I suppose what has made it more difficult is that, apart from colds, she has never been ill and she really hates taking the medication - she says that her seizures have got worse since she has been taking it. Combine that with the usual teenage moods and you can imagine what we are going through!  Thank you again - I have recommended you on the parents’ forum of the National Epilepsy Society’s website. Dear Don, Thank you for delivering my order for new pillows, the next day! I will continue to use your service, because of the excellent quality of your product and the prompt delivery. Regards JD. Dear Don, I have just received my order. Thank you very much and wow!! What an improvement you’ve made on the pillow since the last two I bought! It feels much softer. My daughter is going to be so pleased. Once again, we can’t thank you enough. We sleep with peace of mind, knowing our daughter won’t suffocate if she has a seizure. Thank you so much Don! I received my pillow yesterday, you’re a lifesaver! My daughter used it last night. I actually slept a bit last night! God Bless U and your family! Anti-Suffocation Pillows from www.sleep-safe.co.uk 23 What Parents and Carers say  about Sleep-Safe Anti-Suffocation Pillows Don, I just wanted to touch base with you and let you know that we got the pillow on Monday. My daughter absolutely loves it! It is the first pillow that I have ever allowed her to sleep on. I am so happy that you designed it. I know you know as a parent that you would do anything you could to make sure that your child is safe. When I get the chance to sign up at some of these epilepsy sites, I plan on telling people how much it put me at ease! Take care and God bless. Hi Don I just had to say a huge THANK YOU for a fantastic product! WOW...... Not only can my child sleep safe now but SO CAN I, knowing he is safe... For 5 years now I cannot remember having a beautiful peaceful sleep until last night. My 5yr old slept soundly and so did I. He loves his new MAGIC PILLOW - he thinks it’s quite cool... J suffers so many different types of seizures so this is a god send... I had to tell you about how this has changed our lives dramatically on the first night, people are so quick to complain but not so quick to say Brilliant and Thank You. Well a HUGE THANK YOU FROM US ALL. YOU WILL BE IN OUR THOUGHTS – M. Dear Mr Alderton, Thank you for processing my order for 2 sleep safe pillows. I confirm that I have received your E mail and wish to apply for VAT exemption for this order. The service I have received from your company has been exemplary and thank you sincerely for the speed with which my order has been processed. The pillows have arrived safely! These are early days in the diagnosis for my son, and for us, and it is so reassuring that we have access to so much help and information regarding epilepsy. The information pack you also sent with the pillows has been very useful to read and my son has already ensured that the “I have epilepsy” card and first aid notes are tucked securely on his person whenever he goes out of the home! Maybe all this helps me not be so frightened when he is away from me. Thank you once again. Mr. Alderton, Thanks for your swift arrangements for shipment and delivery of  sleep-safe anti-suffocation pillow and pillow-cases for my daughter. I guessed that you have had a comprehensive understanding of seizure problems from inside out and your letter has proven correctness of my guess. You have done great job to keep thousands of people safe and protected during sudden occurrences of seizure while sleeping. Therefore you deserve to be blessed by The God. With best wishes, Giorgi and Family, United Arab Emirates. Anti-Suffocation Pillows from www.sleep-safe.co.uk 24 Some Frequently Asked Questions about Sleep-Safe  Anti-Suffocation Pillows After you receive your Sleep-Safe, we may send you an email seeking your opinion and asking for any constructive criticism and suggestions for improvement. This is a part of our ongoing survey of users and carers. However, here are the answers to a few questions that crop up regularly: Q.  What influence do user and carer comments have on the design of Sleep-Safe? A.  During the past 30+ years suggestions from users and carers has led to several complete  re-designs of Sleep-Safe: a smoother surface to improve comfort, a large cell Aero-Matrix to lessen ‘flattening’ during intense-use situations, and the latest innovation – a TakeApart design. In addition to these user-led improvements, we have integrated extra ThruChannelling and progressively smoother micromesh covers. This unique blend of features  - the micromesh cover, the profiled surface, the Thru-Channelling and the Aero-Matrix - permits air to pass between the surface of the pillow and the cover and through the body of  the pillow itself to provide even greater breathability, comfort and, above all, user safety. Q.  Is a ‘firmer’ version of Sleep-Safe available? A.  In response to feedback the ‘firmness’ of Sleep-Safe has actually been reduced - they’ve  been made softer - because most users wish for a pillow as similar to a ‘normal’ domestic pillow as possible. A latex version of Sleep-Safe has been trialled, however latex is a natural product derived from the Havea brasiliensis tree and contains proteins to which some individuals develop an allergy. Other natural products such as grains and vegetable fillings can cause similar problems. The entirely synthetic nature of Sleep-Safe means that possible allergens can be eliminated more easily, thus reducing the likelihood of allergies, breathing difficulties and hypersensitivity reactions.  Q.  Is a ‘softer’ version of Sleep-Safe available? A.  There has to be a ‘trade off’ between softness and breathability. The softer the pillow, the  more likely it is to shape around the nose and mouth and to suffocate the user. Q.  What about the micromesh cover? A.  The micromesh cover is the same type of fabric used to line clothing that ‘wicks’ perspiration  away from the skin - we always use materials which already have established uses in ‘nextto-skin’ applications. Over the years, the original net cover (which veteran Sleep-Safe users  will remember) has been replaced by a succession of smoother materials. The textile we use  currently is chemically inert and inherently flame retardant, and any replacement material  must also possess these characteristics; in particular, it must not require any chemical  treatments, which could cause allergies, breathing difficulties and hypersensitivity reactions. Q.  Are coloured pillow covers available? A.  No, because dyes may cause skin reactions resulting in high temperatures and a danger of  seizures. Q.  Is Sleep-Safe suitable for use by vegans? A.  Yes. Sleep-Safe contains nothing created from the exploitation of living creatures. Anti-Suffocation Pillows from www.sleep-safe.co.uk 25 Brief Biographies of  Don and Chris Alderton  Don Alderton is a pharmacist who has worked in health care since 1963, and served 13+ years in hospitals and field medical units of the Royal Army Medical Corps. After three years with the Trucial Oman Scouts, a Bedouin Arab force in the Trucial States, he  left the army to go to university and then to  qualify as a pharmacist. He has managed and owned a number of  pharmacies and has worked as the medical devices registration specialist for a leading surgical equipment manufacturer.  His experience in medical device regulation makes him well qualified to ensure that SleepSafe Anti-Suffocation pillows conform to the  essential requirements of UK legislation and  the relevant EU Directives. Don is registered with the Royal Pharmaceutical Society of Great Britain and his vocation as a pharmacist ensures that he keeps well up to date with health care issues. For six years Don was Secretary of the Chester Branch of Arthritis Care (400+ members) with overall responsibility for  coordinating the group activities including hydrotherapy, holidays and branch meetings.  Anti-Suffocation Pillows from www.sleep-safe.co.uk During that time he negotiated a substantial 3-year National Lottery grant which enabled the introduction of new local initiatives aimed at reducing the problems of social isolation stemming from disability and low income. Chris Alderton has worked in the NHS for  over 40 years and is a qualified general nurse  and midwife. She is also a health visitor, and this additional qualification in public health enables her to work with families to give pre-school-age children the best possible start in life. She has wide-ranging knowledge and experience within health promotion and preventative care for families, especially children and their parents. Chris is a trained psychotherapist and mindfulness teacher, with wide experience of providing outreach therapy in primary care settings and courses for health and education professionals and members of the general public, including carers. Chris says, ‘I’m very aware of the detrimental effects of long term stress and anxiety on the lives of families and especially on carers. I’ve witnessed the transformative effects and stress reduction that evidence-based practical medical solution can bring. 26 ‘It’s a situation I experienced at first-hand: our infant son’s seizures were extremely worrying, causing deep concerns about his night-time safety – the unpredictability of convulsions, possibly resulting in cessation of breathing, brain damage and even death  due to lack of oxygen. We could minimise the  risk with breathable bedding but standard domestic pillows were fundamentally unsafe.’ ‘This is why, personally and professionally, I endorse the use of Sleep-Safe AntiSuffocation Pillows as an important aid to  safe sleeping and alleviating the anxiety and  concerns of parents and carers.’ The information that Don and Chris provide is based on the principle that patients, residents, service users and carers get the best support when there is inter-professional communication between colleagues from  different health and social care disciplines. Chris and Don’s aim is to promote a sense of personal empowerment which will enable everyone affected by seizures - especially carers - to manage more effectively the  Anti-Suffocation Pillows from www.sleep-safe.co.uk underlying medical condition. 27 Notes                      Anti-Suffocation Pillows from www.sleep-safe.co.uk 28 Notes                      Anti-Suffocation Pillows from www.sleep-safe.co.uk 29 Notes                      Anti-Suffocation Pillows from www.sleep-safe.co.uk 30 Notes                      Anti-Suffocation Pillows from www.sleep-safe.co.uk 31  Anti-Suffocation Pillows Protects THEM while they sleep –  and gives YOU peace of mind! 34 th Anniversary Sleep-Safe Products 1992-2026 A Family Company,  run by Healthcare Professionals, focussed on Healthcare Integrity. www.sleep-safe.co.uk Order online or phone 07773 619552  Email to enquiries@sleep-safe.co.uk  Connect with us!    @sleepsafepillows     #sleepsafepillows Information in this leaflet summarises published research and guidance and is not intended as individual medical advice. Avondale House, 70 Tarvin Road, Littleton, Chester CH3 7DF Tel: 07773 619552   Web: www.sleep-safe.co.uk   Email: enquiries@sleep-safe.co.uk Sleep-Safe Products - Beechgrove Enterprises UK Limited   VAT Registration No GB 753 3557 21 Registered in England & Wales No 3985753   Registered Office: Egerton House, 55 Hoole Road, Chester CH2 3NJ Copyright © 2026 Sleep-Safe Products 20190812 all rights reserved.

NICE Booklet

Protects THEM while they sleep – 
and gives YOU peace of mind!
   
The diagnosis and management of
epilepsy in children, young people
and adults
Information for the public
Published 2022
www.nice.org.uk
About this informationAbout this information  
may be diferent to that described in this booklet.
Always follow the advice you have been given by
your personal epilepsy specialist in your country.
NICE clinical guidelines advise the NHS on caring for people with speciic conditions or
diseases and the treatments they should receive. The information applies to people using the
NHS in England and Wales. 
In December 2022, we updated the advice in our guideline on epilepsy with warnings about
sodium valproate – a medicine offered to some people with epilepsy. Sodium valproate must 
not be used during pregnancy, and should not be used in girls and women who could get
pregnant, unless there is no alternative and a pregnancy prevention plan is in place. This is 
because of the risk of malformations and developmental abnormalities in the baby. 
This information explains the advice about the diagnosis and management of epilepsy in children,
young people and adults that is set out in NICE clinical guideline 217.
 
– a ‘Paient and Carer’ focused summary of the 154 page
Online NICE Clinical Guideline NG 217
– an overview of the NICE Clinical Guideline 217
SEE THE FULL 154 PAGE GUIDELINE HERE: 
https://www.nice.org.uk/guidance/ng217
(There is a click-through link in the shipping advice email we sent to you)
Informaion for the public
Published 2025
www.nice.org.uk
About this informaion
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
With compliments from
Don and Chrisine Alderton
The makers of
 Ani-Sufocaion Pillows
www.sleep-safe.co.uk
In your country, the guidance on managing epilepsy 
Page 1
of 28
The diagnosis and management of epilepsy in children, young people and adults
Contents
Does this informaion apply to me? Pg2 Epilepsy: the care you 
should expect
What is epilepsy? Pg5 Types of seizure Pg5
Treaing epilepsy Pg6 Ater a irst seizure Pg6
Seeing a specialist Pg7 Tests Pg8
Ater your diagnosis Pg10 Treatment and care Pg12
Regular reviews Pg18 Special consideraions for 
certain groups
Care in paricular situaions Pg26 Reducing the risk of epilepsyrelated
death
including
sudden

unexpected
death
in
epilepsy

(SUDEP)
More informaion Pg28
Does this informaion apply to me? 
Does this information apply to me? Does this information apply to me? 
Yes, if you have epilepsy, or you are the parent or carer of a child or young person with epilepsy. 
The advice in the NICE guideline covers the diagnosis, treatment and management of epilepsy. It 
does not cover surgical interventions in detail. 
It also does not speciically look at the treatment of newborn babies or the diagnosis or
management of seizures caused by fever (febrile seizures). It does not cover complementary
('alternative') therapies, such as acupuncture or herbal medicine, or lifestyle issues. 
For the remainder of this information, the term: For the remainder of this information, the term: 
• 'child''child' will be used to describe a child aged from 1 month to 11 years old
• 'young person''young person' will be used to describe those between the ages of 12 and 17
• 'adult''adult' will be used to describe those who are 18 or over
• 'older people''older people' will be used to describe those who are 65 or over based on the evidence
that was reviewed.
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Pg3
Pg19
Pg27
Page 2
of 28
The diagnosis and management of epilepsy in children, young people and adults
In January 2025 NICE amended recommendaions on valproate and topiramate in line with
the Medicines and Healthcare products Regulatory Agency (MHRA) “Guidance on the use of 
valproate, valproate use in people younger than 55 years, valproate use in men, and the use of 
topiramate” to emphasise that: 
•  valproate must not be started for the irst ime in people (male or female) younger than
55 years, unless 2 specialists independently consider and document that there is no other
efecive or tolerated treatment, or there are compelling reasons that the reproducive risks
do not apply
•  boys and men should be advised to use efecive contracepion (condoms, plus contracepion
used by a female sexual partner) throughout the valproate treatment period and for 3 months
ater stopping valproate
•  men taking valproate who are planning a family within the next year should discuss potenial
ferility risks and treatment opions with a healthcare professional
•  topiramate should not be used in women and girls of childbearing potenial unless the
condiions of the Pregnancy Prevenion Programme are fulilled. 
Epilepsy: the care you should expect
The epilepsies are a group of condiions afecing the brain. People with epilepsy have repeated
bursts of abnormal electrical acivity in the brain that lead to epilepic seizures. Usually, a seizure
lasts for a few seconds or minutes and then brain acivity returns to normal.
Epilepic seizures can take diferent forms. Some involve movements that the person cannot
control, such as jerking or twitching, going sif, or falling to the loor and shaking. Others involve
becoming confused or having unusual sensaions. Some people lose awareness while others
remain aware of what is happening.
Epilepsy can start at any age, but most commonly starts in childhood or in later life. Some people
have epilepsy for just a period in their life while others live with it for many years or all their life.
People with epilepsy are usually ofered medicines called aniseizure medicaions (previously
called aniepilepic drugs or AEDs) that aim to stop or reduce seizures. There are other treatment
opions for some people, such as epilepsy surgery, if medicines do not work.
The NICE Guideline NG217 ‘Epilepsies in children, young people and adults’ should make a
diference by ensuring you are aware that:
•  you should see an epilepsy specialist within 2 weeks of a suspected irst seizure for assessment
and diagnosis, and more urgently if a type of seizure called infanile spasms is suspected
•  you are ofered further invesigaions promptly if epilepsy is likely, such as an EEG (which
records brain acivity) and an MRI scan, if appropriate
•  people with epilepsy know what type of epilepsy or epilepsy syndrome they have and the type 
of seizure they have experienced
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 3
of 28
The diagnosis and management of epilepsy in children, young people and adults
•  people with epilepsy and their families and carers have an informaion and care planning
session with an epilepsy specialist nurse and know how to contact them for support and 
informaion
•  people with epilepsy and their families and carers are given opportuniies to discuss the risks
of epilepsy, including sudden unexpected death in epilepsy (SUDEP), and how to reduce their
risk
•  people with learning disabiliies get extra support to manage their epilepsy and are ofered the
same treatments as everyone else
•  women and girls with epilepsy who are planning pregnancy or are pregnant have a review of
their aniseizure medicaion and understand the risks and beneits of diferent opions
•  people who need extra care for their epilepsy have regular reviews
•  people with epilepsy can be seen by a specialist in a teriary epilepsy service if they need
further invesigaions or addiional experise to manage their seizures.
Making decisions together
Decisions about treatment and care are best when they are made together. Your healthcare
professionals should give you clear informaion, talk with you about your opions and listen
carefully to your views and concerns.
To help you make decisions, think about:
•  What maters most to you – what do you want to get out of any treatment?
•  What are you most worried about – are there risks or downsides to the treatment that worry
you more than others?
•  How will the treatment afect your day-to-day life?
•  Whether you are likely to get pregnant now or in the future?
•  What happens if you don’t want to have treatment?
If you need more support to understand the informaion you are given, tell your GP, pharmacist 
or epilepsy nurse.
Epilepsy specialist nurses
All children, young people and adults with epilepsy have access to an epilepsy specialist nurse
who:
•  has a central role in providing informaion, educaion and support 
•  is a point of contact for, and facilitates access to, other community and muli-agency services.
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 4
of 28
The diagnosis and management of epilepsy in children, young people and adults
What is epilepsy?
Epilepsy is a condiion that afects the brain. There are billions of nerve cells (neurons) in the 
brain, which are linked together to form chains. All of the funcions of the brain are controlled by
these neuron chains, and so movement, speech, thoughts, sensaions and feelings all depend on
the signals being passed in a regulated and orderly way. The acivity of the neuron chains is
coordinated by electrical and chemical signals.
People with epilepsy have recurrent bursts of abnormal electrical acivity in the brain. This change
in brain acivity leads to an epilepic seizure. An epilepic seizure can take a number of diferent
forms – it can cause changes in a person’s body movements, awareness, behaviour, emoions or
senses (such as taste, smell, vision or hearing). Usually a seizure lasts for only a few seconds or
minutes and then the brain acivity returns to normal.
Having one seizure does not necessarily mean that someone has epilepsy – people can have a
‘oneof’ seizure. 
‘Epilepsy’ is not a single condiion: in the NICE guideline, the term ‘the epilepsies’ is used to show
that not just one but many brain condiions can result in recurrent epilepic seizures. Some
epilepsies start in childhood, some start in young people or in adults, while others start in older
people; some last for only a short ime and others last for a lifeime; some have litle impact on a
person’s life and others can have a major efect on a person’s ability to funcion and live their
daily life.
Types of seizure Types of seizure 
Types of seizure
There are many different types of epileptic seizure, but they are divided into two main groups (focal
or generalised) depending on the source of the seizure within the brain. 
Focal seizures Focal seizures 
Focal seizures
Focal (or partial) seizures are seizures that start in one part of the brain. These seizures may take
many different forms depending on the part of the brain that is affected. They may involve a change
of movement or behaviour; a person may remain aware of their surroundings during a seizure, or
they may lose awareness. 
Generalised seizures Generalised seizures 
Generalised seizures
Generalised seizures are more distributed and affect both sides of the brain at once. There are
different types of generalised seizure, the most recognised of which is the 'tonic–clonic seizure'
(where the person goes stiff and then has jerking movements). During a generalised seizure, the 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 5
of 28
The diagnosis and management of epilepsy in children, young people and adults
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
person may lose consciousness, fall or have muscle spasms. 
Secondarily generalised seizures Secondarily generalised seizures 
Secondary generalised seizures
Sometimes a focal seizure spreads from one side of the brain to the other – when this happens this
is known as secondary generalisation. 
Seizures and possible causes Seizures and possible causes 
Seizures and possible causes
Some people with epilepsy have only one type of seizure, and others have more than one type. The
type of seizures a person has may change over time. In this information, the term 'seizure' could
mean 'seizures' for people who have more than one type of seizure. 
With increasing advances in technology, it is possible to give a cause of the epileptic seizures in a
growing number of cases (for example, damage to the brain during a dificult birth, or a head injury).
However, sometimes there is no known cause. 
Treating epilepsy Treating epilepsy 
Treaing epilepsy
Some treatments may not be suitable for you, depending on your exact circumstances. If you
have questions about speciic treatments and options, please talk to a member of your 
healthcare team. 
There are effective treatments that can prevent seizures happening. The type of treatment needed
and how effective it is depends on the type of epilepsy, so it is important to accurately diagnose the
type of seizure and the 'epilepsy syndrome'. Each epilepsy syndrome is deined by a particular
combination of symptoms and signs, which includes the type of seizure, the age of the person when
seizures start, and the results from examinations and tests. For more information see treatment
and care. 
After a irst seizure After a irst seizure 
Ater a irst seizure
If it is suspected that you have had a seizure, you should be assessed by a healthcare professional.
This is likely to be a doctor at the hospital emergency department or it could be your GP. If they
think that you may have had an epileptic seizure, you should be offered an urgent appointment with
a specialist. An urgent appointment should take place within 2 weeks. 
Page 6
of 28
The diagnosis and management of epilepsy in children, young people and adults
Specialists Specialists 
Specialists
For an adult, the specialist should be a doctor with training and experise in diagnosing and
treaing epilepsy.
For an adult, the specialist should be a doctor with training and expertise in diagnosing and
treating epilepsy. 
For a child or young person, the specialist should be a doctor who treats and cares for
children (a paediatrician) and who has also had special training in diagnosing and treaing
epilepsy.
For a child or young person, the specialist should be a doctor who treats and cares for
children (a paediatrician) and who has also had special training in diagnosing and treating
epilepsy. 
While you are waiting for your appointment with the specialist, you and your family or carer should
be given information about how to recognise a seizure and what to do if you have another one. This
should include advice about irst aid. You should be advised to contact a healthcare professional if
you do have another seizure before you have been seen by a specialist. 
Seeing a specialist Seeing a specialist 
Seeing a specialist
When you see the specialist they should ask you, and anyone who was with you at the time, what
happened when you had the seizure. Your description of what happened, and any information from
witnesses, is really important, and will help the specialist to decide whether or not you may have
had an epileptic seizure. 
The specialist should also carry out a physical examination. This should include checks on your
heart and brain. In children, the specialist may also check their development. They may also ask you
to see professionals with training in other areas, such as a cardiologist (a doctor who specialises in
heart problems), a psychiatrist or a clinical psychologist. 
The specialist will use the information about what happened when you had the seizure and any
other symptoms you have to determine whether you may have epilepsy. However, epilepsy can be
dificult to diagnose, so the specialist may want to carry out some tests (see tests) or refer you to a
specialist centre (see referral to a specialist centre) to conirm the diagnosis. Even if the specialist
thinks it is unlikely that you have epilepsy, you should be offered another appointment to see how 
you are. 
The specialist may also ask you or your family or carer to write down what happens before, during
and after your seizure, and to keep a diary of when the seizures happen and what you were doing at
the time. They may ask if it's possible to make a video recording of a seizure, so that they can watch 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 7
of 28
The diagnosis and management of epilepsy in children, young people and adults
it to help them ind out what is causing your seizures. 
Tests Tests 
Tests
If the specialist thinks that you should have some tests they should discuss with you why you need
them, what exactly will happen and what they are looking for. If the tests are for a child, they should
be done in a child-friendly environment. Examples of some tests you may be offered are given
below. 
Once you have had the tests, the results should be explained fully to you. 
An EEG An EEG 
An EEG
EEG is short for 'electroencephalogram' and is also known as a brainwave test. It is a painless test
that records the brain's electrical activity. You may be offered an EEG if the specialist thinks you
have epilepsy because it may help to show whether your seizures are starting in the brain (meaning
they are epileptic). However, you should not be offered this test if it is thought that you fainted or
had a blackout rather than an epileptic seizure, because the EEG may give inaccurate results. 
If you are offered an EEG, you should have the test within 4 weeks of the specialist requesting it. 
Before you have an EEG the specialist should explain that lashing lights may be used to try to
trigger abnormal electrical activity in your brain. It is possible that this could cause you to have a 
seizure, but only if you are sensitive to light, which is quite rare. If you decide you would prefer not
to have the test you should be supported in this. 
EEG results on their own are not accurate enough to show whether you have epilepsy or not – the
specialist should use them along with your symptoms to help make a diagnosis. They may also help
the specialist decide what type of seizure and epilepsy syndrome you have. 
If after having an EEG it is still not clear whether you have epilepsy, or the type of epilepsy you have
remains uncertain, you may be offered a repeat EEG. This should normally be done when you are
either very tired or asleep (also called a sleep-deprived or sleep EEG)because it makes it easier to 
seeany abnormal brain activity. 
When a child or young person is going to have a sleep EEG, their parent or carer may be asked to
change their child's normal sleep patterns so that they become extra tired. Or a substance called
melatonin may be used to make them sleepy. 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 8
of 28
The diagnosis and management of epilepsy in children, young people and adults
If a diagnosis still can't be made, you may be offered an 'ambulatory EEG' or an EEG combined with
video recording. An ambulatory EEG uses small electrodes to measure your brain activity over 
several hours, days or weeks while you continue with your daily life. In a video EEG, you will be 
monitored in hospital for several days. If a seizure does occur it is recorded on video and used along
with the EEG to help make a diagnosis. 
Neuroimaging Neuroimaging 
Neuroimaging
Neuroimaging means taking pictures of the brain. This is also called 'scanning'. It can help the
specialist to see if a physical problem is causing your seizures. 
You may not always need neuroimaging if you have been diagnosed with idiopathic generalised
epilepsy. This is a type of epilepsy syndrome that is thought to have a genetic cause. 
If you are offered neuroimaging, you should usually have a type of imaging test called an MRI, which
uses magnetic ields to produce a picture of the brain. MRI is short for 'magnetic resonance
imaging'. You should have this test within 4 weeks of the specialist requesting it. An MRI is
particularly important if you are an adult when your epilepsy starts, if it looks like your seizures
start in a speciic part of the brain, or if your seizures continue after you have started taking
medication. It is also important in children who develop epilepsy before they are 2 years old. 
In some situations you may be offered a different imaging test called a CT scan, which uses X-rays
to produce a picture of the brain. CT is short for 'computed tomography'. It may be offered if an MRI 
is not available or not suitable for you, or if information is needed quickly about whether your
seizures are being caused by a brain injury or illness. CT scanning may also be more suitable for
some children and young people who would need to have an anaesthetic to have an MRI but not for
a CT scan. 
Other tests Other tests 
Other tests
You may be offered other tests to help conirm what is causing your seizures. These might include
blood tests (and urine tests for children and young people), or a test on your heart called an ECG
(which is short for 'electrocardiogram'). Depending on the results of your heart test you may be 
offered a referral to a cardiologist (a heart specialist). 
For some people with epilepsy it is important to assess learning disabilities, speech and memory
(for example, if you are having dificulties at school or work, or if your memory isn't as good as it
used to be). If this is the case, the specialist may offer to refer you to another healthcare
professional for a 'neuropsychological assessment'. 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 9
of 28
The diagnosis and management of epilepsy in children, young people and adults
Questions you may want to ask about tests Questions you may want to ask about tests 
Quesions you may want to ask about tests
• Please could you give me more details about the tests or invesigaions you think I
should have?
• Please could you give me more details about the tests or investigations you think I
should have?
• What can I expect when I have an EEG?
• What can I expect when I have an EEG?
• What happens with a scan?
• What happens with a scan?
• Should I be having an ECG?
• Should I be having an ECG?
• What do these tests involve?
• What do these tests involve?
• Where will these be carried out? Will I need to have them in hospital?
• How long will I have to wait unil I have these tests?
• Where will these be carried out? Will I need to have them in hospital?
• How long will it take to get the results of these tests?
• How long will I have to wait until I have these tests?
How long will it take to get the results of these tests? 
After your diagnosis After your diagnosis 
Ater your diagnosis
If you are diagnosed with epilepsy you should be given a chance to talk about your diagnosis and
how you feel about it with a healthcare professional – this will most likely be your specialist. Your 
specialist should explain what type of seizures and epilepsy syndrome you have, their possible
effects, and how they might change in the future. They should help you to decide on a plan to
manage your condition, and should discuss with you the importance of learning skills to increase
your conidence in living with epilepsy. They should also give you details about where to ind more
help and support. 
Who will provide your care? Who will provide your care? 
Who will provide your care? 
When you are living with epilepsy you are likely to receive treatment and care from more than one
healthcare professional. You should be given the name of one member of your healthcare team who
is responsible for making sure you have all the information you need. This will usually be the 
healthcare professional you see most often, for example your GP or specialist. You should be
advised to register with a GP if you are not already registered, and you should be given details of
how to contact a specialist service if you need to. 
An epilepsy specialist nurse should also be involved in your care. These nurses are trained and have 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 10
of 28
The diagnosis and management of epilepsy in children, young people and adults
experience in caring for people with epilepsy. They can provide you and your family or carer with
information about epilepsy, and they can make sure that you are getting the right help and support 
from other healthcare professionals. They can also provide a link between you and your specialist. 
Information about epilepsy Information about epilepsy 
Informaion about epilepsy
Your healthcare professional should offer you information about epilepsy in a format that you ind
useful. They should make sure you have relevant information when you need it (for example, before
you make important decisions such as planning for a baby or decisions affecting your career or
work). Every time you see your healthcare professional they should make time to check that you
have all the information you need. They should use a checklist to make sure they cover everything
you need to talk about. 
You and your family or carer should be given information about: 
• your diagnosis and treatment options available to you, including any possible side effects of
medications
• what can trigger seizures and how to control or avoid them
• what's likely to happen in the future
• how to manage living safely with epilepsy, including advice about irst aid
• psychological issues, such as depression and anxiety
• practical issues such as social security beneits, insurance issues, driving and road safety
• education and healthcare at school
• employment and independent living for adults
• the importance of telling an employer if you have epilepsy (contact support groups or charities
if further information is needed)
• reducing the risk of sudden death caused by epilepsy (this is sometimes referred to as SUDEP,
which stands for sudden unexpected death in epilepsy; see sudden unexpected death in
epilepsy)
• status epilepticus (see if you have status epilepticus)
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 11
of 28
The diagnosis and management of epilepsy in children, young people and adults
• how epilepsy can be affected by, and can affect, your lifestyle (for example, the use of illegal
drugs, alcohol, sexual activity and the effects of not getting enough sleep)
• family planning and pregnancy
• local and national support groups and charities, and how to contact them.
Questions you may want to ask Questions you may want to ask 
Quesions you may want to ask
• Does having sex increase my chance of having a it?
• Does having sex increase my chance of having a it?
• Is there some writen informaion (like a lealet) about epilepsy that I can have?
• Is there some written information (like a lealet) about epilepsy that I can have?
• Can you tell me about any support groups in the area?
• Can you tell me about any support groups in the area?
Children and young people Children and young people 
Children and young people
Children and young people with epilepsy should be offered special activities tailored to their age to
help them learn to manage their condition. There should also be arrangements in place for when
young people make the move to adult services (see special considerations for young people). 
People at risk of seizures People at risk of seizures 
People at risk of seizures 
If you have never had a seizure but you have had a severe brain injury, you have a strong family
history of epilepsy or you have learning dificulties, you are at risk of developing seizures. You
should be given information about epilepsy and the possibility of having seizures as soon as
possible (that is, before you have any seizures). 
Treatment and care Treatment and care 
Treatment and care
Agreeing an epilepsy care plan Agreeing an epilepsy care plan 
Agreeing an epilepsy care plan
Once your condition is diagnosed your healthcare professional should discuss with you possible
options for your treatment and care. They should agree an epilepsy care plan with you, your family
or carer, your GP and your specialist. It should cover your treatment, what to do if you have another
seizure or the treatment doesn't work, and any preferences and lifestyle issues you have discussed. 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 12
of 28
The diagnosis and management of epilepsy in children, young people and adults
Starting on epilepsy medication Starting on epilepsy medication 
Staring on epilepsy medicaion 
You should only be offered medication for epilepsy after your diagnosis has been conirmed and if 
medication has been recommended by a specialist. Your specialist should have a full discussion with
you about all your treatment options before you consider taking medication for epilepsy. The
decision whether or not to take medication for your epilepsy should be made jointly by you (and
your family or carer if appropriate) and your specialist, after the specialist has explained to you the
risks and beneits of epilepsy medication, including the possible side effects of different
medications and which would be most suitable for you. 
Your specialist should explain that medication is usually an option once you have had two epileptic
seizures. However, there are some circumstances when it may be started earlier; your specialist
should discuss these with you. 
Choice of medication Choice of medication 
Choice of medicaion 
There are many drugs available for treating epilepsy. The one that you are offered will depend
partly on your seizure type and epilepsy syndrome. Some drugs for treating epilepsy are not
suitable for everyone. Your specialist should talk to you about which one might be best for you. If
you want to ind out more about the drugs that you may be offered, the versions of this guidance
for healthcare professionals (such as the NICE guideline or the NICE Pathway) contain more
detailed information. 
Usually you will start treatment with just one epilepsy drug. This is known as monotherapy. You
should be advised to keep to the same brand and not to change from one form of the drug to
another, for example, changing from tablets to a liquid. This is because different preparations may
work slightly differently in the body and may not control the seizures as well or may increase the
side effects. 
If the irst drug for treating your epilepsy doesn't help If the irst drug for treating your epilepsy doesn't help 
If the irst drug for treaing your epilepsy doesn’t help
If the irst drug you try doesn't control your seizures or you have side effects, you should normally
be offered another drug. Your specialist should help you to switch gradually from one drug to the 
other. There should be a short period when you are taking both of the drugs. 
If the second drug you try isn't helpful, then the dose of either the irst or second drug should be
gradually reduced, as outlined above, before another drug is tried. Which of the medicines to stop
will depend on how well each one has worked and what side effects it has had. 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 13
of 28
The diagnosis and management of epilepsy in children, young people and adults
If using just one drug doesn't control your seizures, your specialist may suggest taking another one
at the same time. This is known as combination therapy, or sometimes adjunctive or add-on therapy 
or polytherapy. 
If combination therapy doesn't control your seizures, you and your specialist should discuss which
drugs and combinations have helped most with the seizures and caused the fewest side effects. The
drug or combination that has been best is usually the one to carry on with. If you have certain types
of epilepsy seizures or syndromes, and combination therapy has not worked well or you had a bad
reaction to the drugs, you may be offered a referral to a specialist centre (see referral to a specialist
centre) to discuss other drugs you could try. 
If you are still having seizures even though you are taking the most appropriate drug for you, your
diagnosis should be reviewed. This may mean that you are offered more tests or referral to a
specialist centre (see referral to a specialist centre). 
Continuing your medication Continuing your medication 
Coninuing your medicaion
If you are taking medication for epilepsy it is likely that you will need to take it for several years.
Your specialist should discuss this with you, including the possible side effects of taking your
medication and what you should do if your seizures continue. These discussions should be included
in your epilepsy care plan. If you are having no problems managing your epilepsy you should usually
be able to get your prescription for your medication from your GP. 
Taking your medication regularly Taking your medication regularly 
Taking your medicaion regularly 
For epilepsy drugs to work best they need to be taken regularly. Your healthcare professional
should make this as easy as possible, for example, by keeping your schedule for taking your
medication as simple as possible so that you are less likely to forget a dose. You should also be given
information about what to do if you miss a dose or have sickness or diarrhoea. 
Blood tests Blood tests 
Blood tests
You should not usually be asked to have blood tests when you are taking medication for epilepsy. 
However, sometimes blood tests may need to be done to check how certain types of drugs for
epilepsy are working. You may also need blood tests if you are taking medication for something
other than epilepsy in case the different types of drugs don't work well together. Other reasons for
blood tests include certain situations in pregnancy, concern that one of the body's organs is not
working properly, or status epilepticus (see if you have status epilepticus). 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 14
of 28
The diagnosis and management of epilepsy in children, young people and adults
For a child, blood tests should only be done if they're recommended by a specialist. 
Stopping medication Stopping medication 
Stopping medicaion
If you haven't had a seizure for at least 2 years, your specialist should discuss with you the risks and
beneits of continuing with your medication, or slowly stopping some or all of the drugs you are
taking. Your specialist should discuss with you the possible impact of stopping treatment on the
likelihood of having seizures and on your daily life before you make your decision. 
If you decide to stop your medication, this should be done slowly over a period of at least 2–3
months, and a specialist should be involved. If two or more drugs are being taken, only one should
be stopped at a time. 
Before stopping your medication, you and your specialist should agree a plan about what should
happen if your seizures start again. This should include going back to the dose level you were taking
just before your seizures started again and contacting your healthcare professional. 
Referral to a specialist centre Referral to a specialist centre 
Referral to a specialist centre
Referral for children, young people and adults Referral for children, young people and adults 
Referral for children, young people and adults
In some circumstances you may be offered a referral to a team of healthcare professionals in a
specialist centre. This is also known as a 'tertiary centre' or 'tertiary service'. 
The team of healthcare professionals who work at the specialist centre should be experienced in
assessing people with epilepsy that is hard to treat or complicated for other reasons. The team
should include people with different types of training and experience, from psychology (assessing
and helping with behaviour) to occupational therapy (helping people to carry out activities in
everyday living). It should include specialist nurses, and doctors who have specialised in treating
conditions involving the brain with medication (a neurologist) and with surgery (a neurosurgeon). 
You should be referred to a specialist centre (and seen within 4 weeks) if: 
• there is uncertainty about the type of epilepsy syndrome or seizures you have
• your seizures are not controlled with drugs within 2 years of starting them
• you have tried two different types of drugs but these have not worked
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 15
of 28
The diagnosis and management of epilepsy in children, young people and adults
• you are having, or are at risk of, severe side effects from medication
• you have a psychological or psychiatric condition (one affecting your behaviour or your mind),
or
• there is an abnormality affecting the structure of part of your brain.
If you lose skills you had earlier (for example, a child loses the ability to talk or walk) or you develop
behavioural problems, your specialist should refer you immediately to a specialist centre. 
You should be referred to a specialist centre if your specialist thinks it is necessary, even if the
results of the tests you have had previously are normal. 
You should also be referred if you are diagnosed with a particular type of epilepsy syndrome, such
as Sturge–Weber syndrome, Rasmussen's encephalitis, the hemispheric syndromes or
hypothalamic hamartoma. (The organisations listed in more information may provide information
on different types of epilepsy syndromes.) 
Referral for children and young people Referral for children and young people 
Referral for children and young people
In addition to the above, it is very important that children who are suspected of having
developed epilepsy in the irst few years of life (particularly those under 2 years old) are 
referred to a specialist centre as soon as possible so that they can be diagnosed and, if
necessary, treated to prevent seizures from affecting their development. 
If a child or young person has a certain type of epilepsy syndrome, they may also be referred to a
specialist centre. For example, if an infant has infantile spasms, or a child is suspected of having
Dravet syndrome or Lennox–Gastaut syndrome, they may be referred to a specialist centre to see a
tertiary paediatric epilepsy specialist. This is a doctor who specialises in treating children and also
specialises in treating epilepsy. If a child or young person has been diagnosed with an epilepsy
syndrome such as continuous spike and wave during slow sleep, Landau–Kleffner syndrome or
myoclonic-astatic epilepsy, they should also be referred to a specialist centre. (The organisations
listed in more information may provide information on different types of epilepsy syndromes.) 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 16
of 28
The diagnosis and management of epilepsy in children, young people and adults
Other ways of treating epilepsy Other ways of treating epilepsy 
Other ways of treaing epilepsy
Relaxation, cognitive behavioural therapy and biofeedback Relaxation, cognitive behavioural therapy and biofeedback 
Relaxaion, cogniive behavioural therapy and biofeedback
If your seizures aren't being controlled well by medication, other approaches can be tried. Some
people ind it useful to learn ways of relaxing or of controlling negative thoughts and their
responses to them (this is called 'cognitive behavioural therapy' or CBT). Another technique is
'biofeedback', which involves learning ways of changing the brain activity. These approaches don't
replace medication, but they can be tried as an extra option. 
Learning techniques (such as relaxation or CBT) may also be tried for a child if they have focal
epilepsy (which means that the abnormal electrical activity is happening in a particular area of the
brain) and medication on its own hasn't helped. 
The ketogenic diet The ketogenic diet 
The ketogenic diet
The ketogenic diet is a special diet that is high in fat and low in carbohydrates. If seizures in a child
or young person are not being controlled by medication, the child or young person may be offered a
referral to a specialist centre to see a tertiary paediatric epilepsy specialist to discuss trying this
diet. This is a doctor who specialises in treating children and also specialises in treating epilepsy.
See referral to a specialist centre for more information on referral to a specialist centre. 
Brain surgery Brain surgery 
Brain surgery
If epilepsy has been very dificult to control with medication, brain surgery may be considered for
some people. 
There are many different tests you might be asked to have before you are offered brain surgery.
The tests are carried out at a specialist centre (see referral to a specialist centre) and will help to
ind out whether brain surgery would reduce or stop your seizures without causing any new
problems. 
If the tests show that brain surgery might help, you and your family or carers should have the
reasons for this explained to you, and you should have the chance to discuss these with a healthcare 
professional. The possible risks and beneits of the surgery should be explained in detail before you
decide whether or not to have it. If you were to have surgery, this would be carried out by surgeons
working in a specialist centre (see referral to a specialist centre). 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 17
of 28
The diagnosis and management of epilepsy in children, young people and adults
Vagus nerve stimulation Vagus nerve stimulation 
Vagus nerve simulaion
Vagus nerve stimulation involves having a small generator implanted into the chest. The generator 
stimulates the left vagus nerve, which is one of the main nerves in the body. The stimulation travels
up the vagus nerve and into the areas of the brain where the seizures might begin. Vagus nerve
stimulation can reduce seizures in some people. If medication hasn't worked and surgery isn't an
option, you may be offered this procedure. 
Regular reviews Regular reviews 
Regular reviews
You should have regular reviews of your epilepsy and treatment. Usually this is done with your GP,
although you may prefer or need to have the review with your specialist. 
Children and young people should have their review with a specialist. The specialist should be
a doctor who treats and cares for children (a paediatrician) and who has also had special
training in diagnosing and treating epilepsy. 
You should have a review at least once a year (in children and young people, it may take place as
often as once every 3 months). Reviews can take place more often if you prefer or if your epilepsy
needs closer attention. 
If you continue to have seizures, have side effects from your medication, or need specialist advice 
(for example, you are a woman and are planning a pregnancy), you should be able to see a specialist
or be referred to a specialist centre (see referral to a specialist centre). 
What your reviews should cover What your reviews should cover 
What your reviews should cover
At your reviews the healthcare professional should ask whether you are having seizures, how you
are getting on with your treatment, and whether you are having side effects or any dificulties
taking your medication (for example, remembering when to take it). If there are any problems, they
should discuss your treatment plan with you and whether changing medication might help. 
During your review you should be offered information about epilepsy (see after your diagnosis) and
about voluntary organisations that may be of help to you (for example, organisations that can
provide you with more information about epilepsy, or support groups). You should also be offered: 
• an opportunity to see an epilepsy specialist nurse
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 18
of 28
The diagnosis and management of epilepsy in children, young people and adults
• access to counselling services
• further tests or investigations if you need them
• referral to a specialist centre if needed.
Special considerations for certain groups Special considerations for certain groups 
Special consideraions for certain groups
Epilepsy is a condition that can affect anyone. Whoever you are, and whatever your age, you can
expect the same level of care as everyone else with epilepsy. This includes the standard of
treatment, access to specialist services and provision of information, all of which should be
available at a time and in a way that is appropriate to you as an individual. 
Special considerations for women and girls Special considerations for women and girls 
Special consideraions for women and girls
Women and girls with epilepsy need particular information and support to make informed
decisions about their care. All healthcare professionals who treat or support women and girls with
epilepsy should be familiar with the issues affecting them and the information available in these
areas. They should be able to put women and girls in contact with counselling services if this is
necessary. 
Women and girls with epilepsy (and their partners, if appropriate) should be offered relevant 
information and counselling about how epilepsy and epilepsy medication may affect contraception,
becoming pregnant, the pregnancy itself, breastfeeding, caring for children, and the menopause.
This information should be tailored to each woman or girl's needs and should be offered before
they become sexually active, become pregnant or reach the menopause. 
If it's needed, the information should also be passed on to people who are close to the woman or
girl; this may include her family or parent or carer. 
Contraception Contraception 
Contracepion
Taking contraceptives and epilepsy medication at the same time can cause either of these to be less 
effective. A woman's healthcare professional should discuss this with her, and the different forms
of contraception and options available to her. This discussion should also take place with girls who
may need to carry on taking medication as they get older and become sexually active. 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 19
of 28
The diagnosis and management of epilepsy in children, young people and adults
Folic acid supplements Folic acid supplements 
Folic acid supplements
If there's a chance that a woman or girl taking epilepsy medication could become pregnant, she 
should be offered a daily supplement of folic acid (5 mg per day). This is because some drugs used to
treat epilepsy can damage a developing baby and taking folic acid is thought to help stop this from
happening. 
Information about the chances of having a child with epilepsy Information about the chances of having a child with epilepsy 
Informaion about the chances of having a child with epilepsy
Epilepsy can be passed on in the genes from a parent to their child. The risk of this happening is
small overall, but will depend on both parents' family history. An appointment with a 'genetic
counsellor' may be offered if one parent has epilepsy, particularly if they have epilepsy that is
thought to have a genetic cause or they have a family history of epilepsy. Discussions with a genetic
counsellor can help people make decisions about their individual risk of having a child with epilepsy. 
Pregnancy Pregnancy 
Pregnancy
The UK Epilepsy and Pregnancy Register has been set up to collect information about how
epilepsy and epilepsy medication can affect pregnancy, labour and the baby. The more women
who join it, the more useful the results will be. So all pregnant women and girls with epilepsy
are encouraged to put their details on the register or to let a healthcare professional do it for
them. 
Most women and girls with epilepsy have healthy pregnancies, but complications in pregnancy and
labour are more common than in those who don't have epilepsy. For the best possible care, a
woman or girl with epilepsy should receive care during her pregnancy from both her epilepsy
specialist and an obstetrician (a doctor who specialises in pregnancy and childbirth). 
It is important to try to make sure that a woman or girl with epilepsy does not have seizures while
she is pregnant or when she is trying to get pregnant. Generally, the number of seizures doesn't
tend to go up during pregnancy or in the irst few months after the birth. The healthcare
professional should discuss with the woman or girl the type of epilepsy that she has, the risk of
having seizures during pregnancy, and what effect having a seizure would have on her and her 
unborn baby. 
However, if the woman or girl wants to reduce or stop taking medication when she is pregnant, the
risks and beneits of doing this should be discussed with her. She should be told about her risk of
status epilepticus (see if you have status epilepticus) and of unexpected death (see sudden 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 20
of 28
The diagnosis and management of epilepsy in children, young people and adults
unexpected death in epilepsy [SUDEP]). Where appropriate, her specialist should be consulted
before the woman or girl and her GP make decisions about medication. 
Tests during pregnancy Tests during pregnancy 
Tests during pregnancy
Normally blood levels of epilepsy medication don't need to be checked during pregnancy. But if
seizures happen more often or it seems likely that this will happen, then it may be useful to keep a
check on levels of medication in case the dosage needs changing. 
If a woman or girl is taking epilepsy medication, she should be offered an ultrasound scan at 18–20
weeks to check that the baby has developed as expected (this is called the anomaly scan). Earlier
scanning may be offered to allow any major deformities to be detected sooner. 
The labour and birth The labour and birth 
The labour and birth
Because there is a small risk of having a seizure during labour, women and girls are recommended
to give birth in a maternity unit with procedures and facilities in place to care for those with
epilepsy. 
If a mother is taking an enzyme-inducing form of epilepsy medication, she should be advised that
her baby should have a vitamin K injection at birth. 
Breastfeeding Breastfeeding 
Breasfeeding
Mothers who have epilepsy should be encouraged to breastfeed, however they should be
supported in their choice of how to feed their baby. Healthcare professionals should discuss with
the mother any potential risks associated with taking epilepsy medication while breastfeeding and
how these balance against the beneits of breastfeeding so that she can make a decision that suits
her and her baby. 
Caring for the baby Caring for the baby 
Caring for the baby
Parents can take some simple steps to reduce the risk of accidents or injuries to the baby or mother
if the mother has a seizure. A healthcare professional should provide information on these to 
parents during the pregnancy. 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 21
of 28
The diagnosis and management of epilepsy in children, young people and adults
Special considerations for people with learning Special considerations for people with learning
disabilities disabilities 
Special consideraions for people with learning disabiliies
Epilepsy is common in people with learning disabilities, and people with learning disabilities and
epilepsy should receive the same standard of care as those without learning disabilities. People
who have epilepsy and a learning disability have a higher risk of unexpected death (see sudden
unexpected death in epilepsy [SUDEP]) or of dying from an accident or injury. Healthcare
professionals should discuss these risks with them and their advocates, family or carers. Potential
safety problems should also be assessed (see 'Checking the effect of the epilepsy' below). 
Diagnosing epilepsy Diagnosing epilepsy 
Diagnosing epilepsy
Epilepsy can be dificult to diagnose in a person with learning disabilities. When assessing a person
with learning disabilities, the specialist should make sure that they take a full medical history. They
should also ask any witnesses what happened during the person's seizure, and if possible get other
information about the seizure such as a video recording, to help them with the diagnosis. When
necessary, healthcare professionals should provide information and advice to help people to
describe clearly and accurately what they see happening when a person is having a seizure. 
For children and young people with a learning disability, investigations should be carried out to try
to ind out the cause of the epilepsy. 
If needed, the person with learning disabilities should be referred for a neuropsychological 
assessment. 
Help during the tests Help during the tests 
Help during the tests
A person with learning disabilities may need particular care and attention while they're having
some of the tests for epilepsy. For example, it might be necessary to give a person an anaesthetic
before an MRI scan to help ensure they stay still during the scan. 
Epilepsy care plan Epilepsy care plan 
Epilepsy care plan
Healthcare professionals should encourage, support and work with the person with learning
disabilities, and their advocate, family or carers, to develop an epilepsy care plan. They should make
sure there is enough time during appointments to help with this. 
A person with epilepsy and learning disabilities should have access to the same treatments and care 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 22
of 28
The diagnosis and management of epilepsy in children, young people and adults
Epilepsy and learning disabiliies
Learning disabiliies are common in people with epilepsy. NICE’s guideline on epilepsies in children, young people and
adults includes recommendaions to ensure that healthcare professionals: 
• recognise learning disabiliies in people with epilepsy
• give people with a learning disability the support they need to manage their epilepsy
• ofer people with a learning disability the same treatments for their epilepsy as everyone else
This resource summarises these recommendaions and provides links to other relevant guidance from NICE.
Recognising learning disabiliies
• Be aware of the higher prevalence of learning disabiliies in people with epilepsy
• Review neurodevelopment and learning disabiliies as part of rouine management of people with epilepsy
Support at all stages of care
Specialist epilepsy support
Support access to a teriary epilepsy service for people
with suspected or conirmed epilepsy and a learning
disability who need addiional specialist support
Support at appointments
Take into account informaion and support needs, for
example:
• give longer appointments
• provide diferent formats for informaion, such as 
easy read or audio versions
• involve family members or carers or an advocate 
if the person wishes
• share informaion with those involved in their care
NICE’s guideline on decision making and mental 
capacity also includes recommendaions on
supporing shared decision making
Coordinated care
• Provide coordinated care using a mulidisciplinary
team approach
• Be aware that children and young people with a
complex childhood epilepsy syndrome may need
addiional support from a mulidisciplinary team
NICE’s guidelines on mental health problems in
people with learning disabiliies and challenging
behaviour and learning disabiliies also include
recommendaions on coordinaing care
Regular reviews
Arrange regular monitoring reviews (at least annually) 
for adults with epilepsy and a learning disability
More guidance from NICE
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Tesing at diagnosis
Consider whole genome sequencing for people
with epilepsy of unknown cause who have a
learning disability
Access to assessment for surgery
Do not exclude people with a learning disability
from referral for epilepsy surgery assessment if
indicated 
Transiion to adult services
Begin planning transiion early for young people 
with epilepsy and a learning disability
NICE’s guideline on transiion from children’s to 
adults’ services also includes recommendaions on
transiion planning and support
Monitoring during pregnancy
Consider more frequent monitoring reviews
during pregnancy for women and girls with
epilepsy and a learning disability
• Care and support of people growing older with learning disabiliies
• Challenging behaviour and learning disabiliies: prevenion and intervenions
• Learning disabiliies and behaviour that challenges: service design and delivery
• Mental health problems in people with learning disabiliies: prevenion, assessment and management
Page 23
of 28
The diagnosis and management of epilepsy in children, young people and adults
as any other person with epilepsy. However, some epilepsy medication may affect the behaviour or
memory of a person with learning disabilities, and this should be considered when decisions are 
being made about which medication to try as part of the epilepsy care plan. 
Checking the effect of the epilepsy Checking the effect of the epilepsy 
Checking the efect of the epilepsy
The combination of learning disabilities and epilepsy can present some potential safety problems
which need to be thought about. Healthcare professionals should assess how safe a person with
learning disabilities is likely to be if they have a seizure at certain times, for example, while having a
bath or a shower, preparing food or using electrical equipment. 
They should also assess: 
• what might happen if the person had a long seizure or repeated seizures (for example, would
there be someone around to help?)
• what effects there might be if the person has a seizure when they are out or with other people
• the risk of unexpected death (see sudden unexpected death in epilepsy [SUDEP]), and
• whether the person's living arrangements are suitable for their circumstances (for example, if
they live on their own).
Special considerations for young people Special considerations for young people 
Special consideraions for young people
Healthcare professionals should be aware of the different ways that having epilepsy can affect a
young person's life. They should also know that good relationships with family and friends and at
school can help a young person deal with their epilepsy. Healthcare professionals should consider
these issues when they're talking to a young person about their epilepsy, and when they are
offering treatment and support. 
Healthcare professionals should ensure that they encourage young people with epilepsy to be fully
involved in discussions and decisions about treatments and ways of managing their seizures. They
should listen to the young person's wishes and beliefs (and, if appropriate, those of their family or
carers) and should take these into account during these discussions. 
Reviewing the diagnosis and treatment Reviewing the diagnosis and treatment 
Reviewing the diagnosis and treatment
As they get older and start to move towards or into their teenage years, young people should have
their diagnosis and treatment looked at again. This is to make sure that they're still getting the care 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 24
of 28
The diagnosis and management of epilepsy in children, young people and adults
that's most suited to them. 
Changing over to adult care Changing over to adult care 
Changing over to adult care
The arrangements for care of adults with epilepsy are different from those for children and young
people. It's important that the changeover is handled smoothly and that the young person is given
help and support. For example, a young person should have one doctor in their teenage years who
they can get to know, and who should help them as they change over to the adult service. 
Before a young person moves to the adult service, they should have a review of their diagnosis and
treatment. They should also be given up-to-date information on support groups and charities and
help to contact them. 
Special considerations for older people Special considerations for older people 
Special consideraions for older people
Older people with epilepsy should receive the same standard of care as other people with epilepsy.
When agreeing an epilepsy care plan with an older person with epilepsy, healthcare professionals
should also take into account: 
• any other conditions the person may have
• possible reactions between epilepsy drugs they may offer and any other medication the person
may be taking, and
• how taking multiple drugs may affect the person.
Special considerations for people from black and Special considerations for people from black and
minority ethnic groups minority ethnic groups 
Special consideraions for people from black and minority
ethnic groups
People from black and minority ethnic groups may have different cultural and communication
needs which should be considered during diagnosis and management. An interpreter may be
needed or other means of ensuring that a person's needs are appropriately met. 
If an interpreter is needed, they should have both cultural and medical knowledge so that they can 
translate any information accurately. Interpreters from the family are generally not suitable
because of issues such as conidentiality, privacy and personal dignity. 
Information (see after your diagnosis), including information about employment rights and driving,
should be available in an appropriate format or through other appropriate means for people who 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 25
of 28
The diagnosis and management of epilepsy in children, young people and adults
Care in particular situations Care in particular situations 
Care in paricular situaions
Long or repeated seizures away from a hospital 
Long or repeated seizures away from a hospital Long or repeated seizures away from a hospital 
The box below describes the emergency care and treatment you should receive if you have a
convulsive seizure (jerking movements made by the body during a seizure) that lasts for 5 minutes
or more, or if you have 3 or more seizures in an hour. 
Emergency care and treatment you should receive if your Emergency care and treatment you should receive if your
convulsive seizure lasts for 5 or more minutes or you convulsive seizure lasts for 5 or more minutes or you
have 3 or more seizures in an hour have 3 or more seizures in an hour 
Emergency care and treatment you should receive if your convulsive seizure
lasts for 5 or more minutes or you have 3 or more seizures in an hour
• A trained healthcare professional should give you the emergency medication that is
most appropriate for you. However, you may have agreed beforehand which emergency
medication should be used as part of your epilepsy care plan. If it has been agreed that a
family member or a carer will give you the medication, they should have been trained to
do this.
• A drug called midazolam may be placed in your mouth to control your seizures quickly. In
some circumstances another drug called diazepam may be given to you rectally (into the
bottom), or a drug called lorazepam may be given to you through a tube into your vein.
• It may be necessary to call an ambulance, depending on the circumstances and how you
respond to the emergency medication. In particular, an ambulance may be needed if:
－ it's the irst time you have needed emergency medication (as described above)
－ your seizures continue for more than 5 minutes after receiving emergency
medication 
－ you have a history of repeated or prolonged seizures that happen frequently, or 
－ there is concern or dificulty checking your breathing and other vital signs. 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 26
of 28
The diagnosis and management of epilepsy in children, young people and adults
If you have status epilepticus If you have status epilepticus 
If you have status epilepicus
A prolonged seizure or series of seizures when the person does not regain consciousness for 30 
minutes or more is called 'status epilepticus'. Status epilepticus can occur with any type of seizure
but if it occurs with convulsions ('convulsive status epilepticus') it is a medical emergency. 
If you have convulsive status epilepticus then you will be treated in hospital. Healthcare
professionals in the hospital should make sure that you can breathe properly, and should check that
your heart is beating normally. You should also be given some oxygen and have your blood glucose
levels checked. You should also be given some medication to try to stop your seizures. 
If you keep going into status epilepticus If you keep going into status epilepticus 
If you keep going into status epilepicus
If you frequently go into status epilepticus, you and your specialist should discuss and draw up an
individual treatment plan of what to do when this happens. 
If there are no convulsions If there are no convulsions 
If there are no convulsions
Very occasionally someone can go into status epilepticus without convulsions. This isn't such a
medical emergency. Medical advice should be sought but an ambulance is not usually needed. 
Reducing the risk of epilepsy-related death including
sudden unexpected death in epilepsy (SUDEP)
Risk factors
Be aware that epilepsy is associated with an increased risk of premature death, including a risk of
sudden unexpected death in epilepsy (SUDEP).
Potenially modiiable risk factors for SUDEP include:
•  non-adherence to medicaion
•  alcohol and drug misuse
•  having focal to bilateral tonic-clonic seizures or generalised tonic-clonic seizures
•  having uncontrolled seizures
•  living alone
•  sleeping alone without supervision
The risk of epilepsy-related death is increased in people with:
•  previous brain injury
•  previous central nervous system infecion
•  metastaic cancer
•  previous stroke
•  abnormal neurological examinaion indings
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 27
of 28
The diagnosis and management of epilepsy in children, young people and adults
Healthcare professionals should discuss with people with epilepsy, and their families and carers
if appropriate, their individual risk of epilepsy-related death, including SUDEP, from the ime
of diagnosis onwards. For young children, this discussion should be with the child’s parents or 
carers.
Discussion should include:
•  supporing them to understand the risks of epilepsy-related death, including SUDEP
•  exploring and agreeing ways to reduce the risks.
Discussing the risk of SUDEP with people who have seizures during sleep and, if appropriate, 
include their families and carers. Provide informaion on minimising risks, including taking their
medicaion as prescribed.
Intervenions 
Discuss the possibility of introducing or increasing night-ime supervision, for example, a parent
or carer may wish to use a night monitor or an ani-sufocaion pillow for people with epilepsy
who have seizures during sleep and have been assessed to be at higher risk of epilepsy-related
death.
Support people with epilepsy to take their medicaions as prescribed to reduce seizures. Explain
that uncontrolled seizures increase the risk of epilepsy-related death, paricularly for people
with generalised tonic-clonic seizures or focal to bilateral tonic-clonic seizures. Follow the
recommendaions in NICE’s guideline on medicines adherence.
More information More information 
More informaion
The organisations below can provide more information and support for people with epilepsy. NICE
is not responsible for the quality or accuracy of any information or advice provided by these
organisations. 
• Dravet Syndrome UK, 07775 347234
• Epilepsy Action, 0808 800 5050
• SUDEP Action, 01235 772852
• Epilepsy Research UK, 020 8747 5024
• Epilepsy Society, 01494 601400
• Friends of Landau Kleffner Syndrome (FOLKS)
• Matthew's Friends – Dietary Treatments for Epilepsy, 01342 836571 or 07884 054811
• Young Epilepsy, 01342 831342
• Joint Epilepsy Council
You can also go to the NHS website for more information. 
© NICE 2025. All rights reserved. Subject to Noice of rights
(htps://www.nice.org.uk/terms-and-condiions#noice-of-rights).
Page 28
of 28

REFSESN

Scroll down to the Download Booklet link for a booklet which provides full information about Sleep-Safe Anti-Suffocation Epilepsy Pillows. Also, there are brief professional profiles of Don and Chris Alderton – Pharmacist and Health Visitor – who have developed the Sleep-Safe Pillow over 33 years.

The information is divided into several headed sections, scroll down to scan through them.

 General References

1. Prevalence of epilepsy among people with intellectual disabilities: A systematic review
2. Epilepsy prevalence and socioeconomic deprivation in England
3. Socioeconomic variation in incidence of epilepsy
4. West Midlands Epilepsy Network - search on Cost Savings
5. Hospital Episode Statistics On...Epilepsy
6. National Audit of Seizure Management in Hospitals
7. Despite medications, one-third of people with epilepsy continue to have seizures
8. Evidence for the Effectiveness of Sleep-Safe Anti-Suffocation Pillows - Search on mcconnell

Questions? Suggestions for improvements? Feedback? Contact Don now!

dma@sleep-safe.co.uk

Paediatric Epilepsy Nurses Network Meeting

Sleep-Safe Pillows - HOPE and Sleep-Safe Pillows - NICE Strategy 21 to 26 and the HOPE plans in response - Limitations to evidence gathering - Resolving these limitations - 'Topic Avoidance' and 'Moral Distress' - HOPE help and support... for parents, children and for epilepsy nurses - Current development path for Sleep-Safe pillows

• Don's PENN Meeting Notes

1. Preventing Epilepsy Deaths: Clinician Toolkit
2. Keep safe: The when, why and how of epilepsy risk communication
3. What is ‘moral distress’ in nursing and how should we respond to it - University of Bristol
4. Moral distress, why it’s nothing to be ashamed of - Royal College of Nursing
5. Sleep-Safe Pillows Non-RCT Proof of Effectiveness

Requested Re supply

Anti-Suffocation Pillows

A Family Company,
run by Healthcare Professionals, focussed on Healthcare Integrity.

www.sleep-safe.co.uk

Connect with us!    @sleepsafepillows      #sleepsafepillows

From Don Alderton, Pharmacist

a Member of the Royal Pharmaceutical Society

With Compliments

Hello, I hope you’re keeping well, and thanks for requesting a further supply of leaflets, there are some important updates and research news.

New Year… New Patient Information Leaflets…

… With words of hope and encouragement from a Canadian mother, and for patients, parents and carers each pillow includes up-to-the-minute help in understanding the diagnosis and treatment and how to manage daily life while living more safely with epilepsy.

- A sample patient info pack is enclosed for you and your colleagues.

The free and low-cost pillows really do make a difference to people’s lives, see page 3 ‘What Parents and Carers say…’

- Updated epilepsy guidance has been published by NICE and the MHRA, so the information in the leaflets and pillows provided to patients, parents and carers has been modified accordingly.

A new addition in each information pack is the ‘Prevent booklet: What you need to know about valproate’.

- This is in response to evidence that NHS England’s target of reducing valproate prescribing to women of child-bearing age has not been met. The booklet also highlights the risks associated with the use of valproate in male patients.

- A research project seeks to verify anecdotal evidence that the pillows reduce  ‘seizure fear’ which triggers panic ‘must go to A&E’ responses and results in unplanned emergency admissions.

Every pillow that is supplied gives patients an opportunity to contribute their experience to a research project focused on making the pillows available on prescription: This research into the benefits of anti-suffocation pillows has been very promising and publication of an academic paper is imminent. Evidence collection is ongoing.

This is very important both for patients and for the NHS:

- There are 100,000 emergency admissions due to epilepsy

each year in the UK ¹

- NHS Hospital Episode Statistics show that most (84 per cent) of hospital admissions for epilepsy are emergency admissions,

rather than from waiting lists ²

- The average time that patients remain in hospital is 3.8 days, and

- The majority (73 per cent) of patients admitted to hospital for epilepsy don’t undergo any procedures.

That means  280,000 ‘bed blocked’ days each year…

- So reducing ‘seizure fear’ should spare patients and families a great deal of anxiety and unnecessary hospital admissions and free-up much needed beds for the NHS.

Here are some additional resources for epilepsy nurses and patients:

For epilepsy nurses, evidence and information on a range of topics is available at

www.sleep-safe.co.uk/refsesn

‘Information Signposts’ for patients, parents and carers can be seen at

www.sleep-safe.co.uk/signposts

and our Facebook page

https://www.facebook.com/sleepsafepillows/

I’d really value your feedback and suggestions - do please let me know if you know of any additional information that will help patients, parents and carers to manage the condition more effectively.

Best wishes,

Don

Don Alderton | Pharmacist

Refs: 1. Epilepsy Research Institute UK 2. HES On...Epilepsy  - NHS Digital

What Parents and Carers say about Sleep-Safe pillows

In December, we received the Sleep-Safe anti-suffocation pillow from you, for our daughter age 12. She really appreciates having it and is enjoying sleeping on it. Her epilepsy is resistant to medication, despite the best efforts of her Neurologist trying different combinations.  She has a profound learning disability and is non-verbal and has seizures some nights - typically 2 to 3 times per week. Apart from her seizures, she has always had a broken sleep pattern and we are up with her settling her frequently throughout the night. Maggie and I get tired. The Sleep-Safe pillow has made a big difference in that it has reduced the worry Maggie and I have about Ruth, knowing that Ruth's head is resting on the Sleep-Safe pillow - an excellent piece of equipment. 

Thank you so much, we really appreciate your advice and the pillow has given us much needed peace of mind.

 Thank you so very much for the pillows which we received several months ago. As the mother of a son (adult living at home) who has had seizure activity during his sleep (more times than I'd like to remember), they help me feel less anxious and able to sleep at night knowing he is safer because I’ve done just about everything I can do to ensure his "health"...  Thank you very much for your attention to my various e-mails; it was appreciated. 

Thank you so much for our sons sleep safe pillow, it has given us some peace of mind and our first proper sleep since his seizures started last July, and no midnight visits to A&E!

Just wanted to say a massive thank you for our daughters pillow, received two weeks ago. She has been having lots of seizures recently and the pillow makes us all feel better, because now she’s much less worried about going to bed and having a seizure while she’s asleep.

Thank you for a ridiculously fast replacement of two damaged pillows, for excellent no-quibble policy and efficient and courteous service. Much appreciated.

What a great pillow and it certainly does provide peace of mind and has enabled my husband and I to get some more sleep!  My son has taken to sleeping on his new pillow very well and was delighted that the pillow was sent especially for him, with his name on the letter etc! He was OK after his last sleep seizure so we didn’t need to take him to hospital which means a less sleep-disturbed future for all of us.

Thank you - your service is fantastic and helps lots of people. I can't thank you enough for this sleep safe pillow. My son has Aspergers Syndrome and complex severe nocturnal epilepsy. Both my husband and I have been beside ourselves as our sons head buries straight into his pillow during seizures. This has eliminated one factor that puts our sons life at risk. As you will know, epilepsy has such a profound effect on all involved and this pillow eases some of our worries which is a god send to all of us.

Who Else is Using Sleep-Safe Pillows?

670 Sleep-Safe Pillows supplied through DannyDid Foundation United States

300 Sleep-Safe Pillows supplied to Association ASPEC Le village du Perche France

200 Sleep-Safe Pillows supplied to the European Union Dravet Syndrome Foundation EU

60 Sleep-Safe Pillows supplied to "Castelnouvel" home for children with epilepsy France

60 Sleep-Safe Pillows supplied to Children with Special Needs Support, Kisumu, Kenya

Leading health and social care providers in the UK and overseas which are providing Sleep-Safe Anti-Suffocation Pillows to protect their patients with epilepsy and other seizure disorders include:

Young Epilepsy (formerly The National Centre for Young People with Epilepsy) - the UK's leading provider for children and young people aged 5 to 25 with complex epilepsy and other neurological conditions

The David Lewis Centre for Epilepsy - provides residential accommodation, education and health services to people with epilepsy, autism, learning and physical disabilities

Charing Cross Hospital - referral centre for neurosurgery which houses the serious injuries centre for west London

Southern Health NHS Foundation Trust - 150 sites, including community hospitals, health centres, inpatient units and social care services

Dimensions - one of the country’s largest not-for-profits supporting people with learning disabilities, autism, challenging behaviour and complex needs

Cygnet Group – 30+ specialist hospitals and residential centres across England and Scotland

Also … (not a complete list) Hertfordshire County Council Adult Care Services, Nottinghamshire County Council Social Services, the Northern Ireland Health and Social Care Trusts, Somerset County Council, Herts Partnership NHS Foundation Trust, Solihull Care Trust, the States of Guernsey Health and Social Services, Bath & West Community NHS Trust, Central Lancashire PCT, Northgate & Prudhoe NHS Trust, Derbyshire County PCT, Hampshire Partnership NHS Trust, Northumberland Care Trust, Oldham Community Health Services, Barnardo’s, BUPA, SENSE, the leading UK organisation supporting deaf-blind people …

… and thousands of individual personal purchasers with seizure disorders.

USA: About 1 in 10 of all Sleep-Safe are supplied to care provider organisations and individuals in the United States

France: A further 1 in 10 of all Sleep-Safe are supplied to the French Social Services and Epilepsy Societies

Expressions of Support for Anti-Suffocation Pillows

Personal: 10 days ago my son was admitted to the Foothills Seizure Monitoring Unit in Calgary, Canada, and he was discharged today. As I was not present during one of the seizures in the middle of the night, they showed me the episode on video tape. My son turns his head to the right side at the onset of his seizures. I watched the video of my son laying on his right side, turning his head to the right, with his face directly in to the pillow. Of course, this was alarming! Even as I was watching it after the fact, and knew he was ok.The thing is, he was sleeping with pillows that I recently purchased from your company. When my son was admitted to hospital, I brought his sleep-safe pillows to the hospital, as now that I have them, I no longer feel comfortable with him sleeping with any other pillows.

Clinical:

“Anti-suffocation pillows are likely to significantly reduce the risk of suffocation in children (and even adults) who experience frequent nocturnal seizures and particularly if these nocturnal seizures are tonic-clonic (also called Grand Mal) seizures. There is no evidence that the use of an anti-suffocation pillow will completely stop the possibility of a child (or adult) not suffocating during a tonic-clonic seizure, but it is likely these pillows will greatly reduce the risk of suffocation. It would therefore be reasonable, if not wise, to consider using an anti-suffocation pillow in any child (or adult) who is known to experience nocturnal tonic-clonic seizures.”

(Provided to Sallieann Gould the Founder of Epilepsy Sucks, and used with permission)

Academic: “In patients with recognized higher SUDEP risk, prevention measures should be suggested, such as the use of anti-suffocation pillows.”

‘Sudden unexpected death in epilepsy (SUDEP) and sleep’ published in Sleep Medicine Reviews, Volume 15, Issue 4, August 2011, Pages 237-246 Lino Nobili, Paola Proserpio, Guido Rubboli, Nicola Montano, Giuseppe Didato, Carlo A. Tassinari