Information Signposts
See Sleep-Safe Pillows at the Southampton Children's Hospital...
https://southamptonhospitalscharity.org/life-saving-pillows-for-epilepsy-children/
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Sleep-Safe pillows were developed by healthcare professionals Don and Chris Alderton to protect their son when he started having epileptic seizures. Don is a pharmacist and Chris is a health visitor - a specialist community nurse who specialises in working with families with a child aged from birth to five to identify health needs as early as possible. Sleep-Safe is a family run company centred on healthcare integrity.
Thank you for ordering from Sleep-Safe Products, here are some ‘signpost’ links for further information.
I hope you find these useful; if you know of other links which may help Sleep-Safe users and carers, please email me...
-Also - Please email me if any of the links are 'broken', - Thanks!
Check this link for updates to the NICE Epilepsy Management Booklet we sent with your order... https://www.nice.org.uk/guidance/ng217
MHRA urges caution in switching epilepsy drugs
The MHRA advice in our booklet has been updated to give additional guidance on whether it is necessary to maintain continuity of supply of a specific manufacturer’s product... https://www.gov.uk/drug-safety-update/antiepileptic-drugs-updated-advice-on-switching-between-different-manufacturers-products
Epilepsy self-monitoring app EpsMon now available free in the UK
The app was launched to help to help ‘fill the information gap’ apparent in GP epilepsy monitoring. It was initiated by bereaved families of people who had died from sudden death in epilepsy (SUDEP) and created by a team of partners based at Plymouth University, Cornwall Foundation NHS Trust, Royal Cornwall Hospitals NHS Trust and charity SUDEP Action... https://sudep.org/article/epilepsy-self-monitor
Each Sleep-Safe pillow order includes a variety of focussed information that has been selected to 'signpost' you towards help in the day-to-day management of the condition. However, the weblinks in the covering letter are rather long, so you can click through to the information from this email... scroll down for information relating to the UK, the USA, Canada, and Australia.
Epilepsy Scotland has one of the very best online resources for patients and carers at this web page... https://www.epilepsyscotland.org.uk/here-for-you/
The Young Epilepsy Information Service provides Parents Handbooks... https://www.youngepilepsy.org.uk/about-us/
Epilepsy Action Find out more about epilepsy, the symptoms, how to get a diagnosis, treatments and more... www.epilepsy.org.uk/info
NICE, the UK's National Institute for Health and Care Excellence, provides readily accessible summaries of the current evidence base and practical advice on best practice.
Although the UK National Health Services is not legally obliged to follow NICE clinical guidelines, they are considered to be best practice because recommendations are based on the best available evidence.
Read the NICE Epilepsy Clinical Knowledge Summary here... https://cks.nice.org.uk/topics/epilepsy/
There is now a 'Yellow Card' app which enables instant reporting of medication side effects. The Yellow Card Scheme was introduced in 1964 in the wake of the Thalidomide disaster, and has now moved into the digital age. Among the apps many features, it enables instant reporting of side effects directly to the Yellow Card Scheme. Full information and a download link here: https://yellowcard.mhra.gov.uk/
Epilepsy Monitors and Alarms are available from Easylink UK... https://easylinkuk.co.uk/epilepsy-care-guide
Autism - 'SIGN' - The Scottish Intercollegiate Guidelines Network -provides a variety of booklets for adults, partners, friends, family members and carers... https://www.sign.ac.uk/patient-and-public-involvement/patient-publications/autism/
The Inclusive Technology website has many more iPad and Android apps suitable for children with special educational needs and physical disabilities... http://www.inclusive.co.uk/apps
UK Quality Checking Health Checks for People with Learning Disabilities - A way of finding out what is happening at your local 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.
https://www.gov.uk/government/publications/people-with-learning-disabilities-health-checks-audit-tool
The Challenging Behaviour Foundation aims to improve the understanding of challenging behaviour, empower families with information and support and help others to provide better services and more opportunities to people with severe learning disabilities who display behaviours that challenge: www.challengingbehaviour.org.uk
MultiMe is a secure social platform that is designed to help people with learning disabilities and other vulnerable people communicate and take control of their lives. It is based on the idea of individuals telling their Stories through the use of multi-media and achieving their life goals through the help of a support network, in a safe online environment: www.multime.com
Autism Apps was created as a resource for anyone looking for apps for people diagnosed with an autism spectrum disorder, Down syndrome or other special need. Autism Apps links to extensive reviews of the apps written by parents, specialists, and other users usually from first-hand experience. Autism Apps also has links to video demonstrations or video reviews of the apps when they are available. The Apps are also separated into over 30 categories, and the descriptions are all searchable, so any type of app is easy to find and download... https://itunes.apple.com/gb/app/autism-apps/id441600681?mt=8
Epilepsy - In the United States there are useful epilepsy advice and guidance sites at:
MedlinePlus - a service of the National Library of Medicine (NLM), the world's largest medical library, which is part of the National Institutes of Health (NIH). Presents high-quality, relevant health and wellness information that is trusted, easy to understand, and free of advertising, in both English and Spanish. Anywhere, anytime, on any device—for free... https://medlineplus.gov/epilepsy.html
Northeast Regional Epilepsy Group
https://www.epilepsygroup.com/newsletter_notes.php?idseccion=6&idsubseccion=35&idnota=15
The Danny Did Foundation is a US-based advocacy group that provides information about the various risks that accompany epilepsy - including the risk of SUDEP.
This nonprofit also provides information about devices and technologies in the epilepsy space. For qualified candidates, the DannyDid Foundation may be able to provide financial assistance.
Learn more at https://www.dannydid.org/epilepsy-sudep/devices-technology/
Autism - In the United States there are useful epilepsy advice and guidance sites at:
MedlinePlus - https://medlineplus.gov/autismspectrumdisorder.html
National Institutes of Health (NIH) The National Institute of Mental Health (NIMH) is the lead federal agency for research on mental disorders... https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd
Epilepsy - In Canada the Epilepsy Ontario site has some useful resources... www.epilepsyontario.org/resources
Epilepsy - In Australia there are useful epilepsy advice and guidance sites at... http://www.epilepsy.org.au/resources
Epilepsy Action Australia provides an innovative, high quality service across Australia for people with epilepsy... https://www.epilepsy.org.au/
I do hope that these links help you, but please let me know if you need any further information.
Also... please let me know if any of the links are 'broken' dma@sleep-safe.co.uk -
Thanks!
Best wishes,
Don
Don Alderton | Pharmacist | Sleep-Safe Anti-Suffocation Pillows
www.sleep-safe.co.uk