Information Signposts

Sleep-Safe pillows have been developed and improved over nearly 30 years by healthcare professionals: Don Alderton is a pharmacist and Chris Alderton is a health visitor, and it 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 dma@sleep-safe.co.uk

-Also - Please let me know if any of the links are 'broken' dma@sleep-safe.co.uk - Thanks!

Check this link for updates to the NICE Epilepsy Management Booklet we sent with your order...

https://www.nice.org.uk/guidance/cg137/ifp/chapter/Your-care

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    http://www.epsmon.com/


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 provides downloadable Patient Care Plans. These are booklets that are designed to contain all the essential information about a patient and their epilepsy:
www.epilepsy.org.uk/professionals/healthcare/patient-care-plan

NICE, the UK's National Institute for Health and Care Excellence, provides additional, detailed help in their 'Pathways' . NICE Pathways visually represent all of NICE's recommendations on a topic, linking to other relevant topics to create a network of information.

Although the NHS 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.

Here is a link to the NICE Epilepsy Overview which you may find helpful in providing you with an overview of evidence-based recommendations for the management of epilepsy:
http://pathways.nice.org.uk/pathways/epilepsy#path=view%3A/pathways/epilepsy/epilepsy-overview.xml&content=view-info-category%3Aview-about-menu

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 links here:
https://www.nhs.uk/apps-library/yellow-card/

Epilepsy Monitors and Alarms are available from Easylink UK: https://easylinkuk.co.uk/epilepsy-care-guide

SIGN - The Scottish Intercollegiate Guidelines Network provides - 'Autism - A booklet for adults, partners, friends, family members and carers'. It explains the recommendations in the related SIGN clinical guideline to help make patients aware of the tests and treatments they should expect from the NHS. It is a lay translation of the clinical guidelines.

https://www.sign.ac.uk/assets/pat145_adults.pdf

Apps for learning disabilities: There are a whole host of apps out there that can help support someone who has a learning disability, from managing their own health to improving their communication and social skills.

These apps have been recommended by health professionals, charities and parents of children with a range of learning disabilities.

http://bit.ly/2lneEB0

More learning disability apps 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


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

FamilyHub
is a place for parents and carers to ask questions, start discussions, and share their triumphs and challenges. It's a place to connect with people who might be facing the same problems, and gives parents and carers the chance to offer their own support. So if you're got questions or can offer support, join FamilyHub and get chatting!
http://mencap.msgfocus.com/c/1evtii2mjMc3mmAVEzL91ui

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. Many people are discovering the many uses that iPads, iPhones and iPod touches can have as tools and resources for people diagnosed with an autism spectrum disorder, Down syndrome or other disability. Though there are a multitude of apps in the app store that many people diagnosed with autism, Down syndrome or another special need use and enjoy, they can be difficult to find.

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

Autism Glass is a wearable, behavioural aid that uses machine learning and real-time social cues to help those with autism interact with others: http://autismglass.stanford.edu/


What is the most appropriate antidepressant to use in patients with epilepsy?
From the NHS Specialist Pharmacy Service - whose objective is to help to improve the use of medicines so people live longer, fuller lives.
SSRIs are considered first line antidepressant option in patients with epilepsy. Sertraline may be considered better option due to safety data and reduced interaction potential with anticonvulsants.
www.sps.nhs.uk/articles/what-is-the-most-appropriate-antidepressant-to-use-in-patients-with-epilepsy/

In the United States there are useful epilepsy advice and guidance sites at:
www.ninds.nih.gov/disorders/epilepsy/epilepsy.htm
http://epilepsygroup.com/symptoms-epileptic-new-york - Search on pillows for an article about Sleep-Safe

In Canada the Epilepsy Ontario site has some useful resources:
www.epilepsyontario.org/resources

In Australia there are useful epilepsy advice and guidance sites at:
http://www.epilepsy.org.au/resources
http://www.epinet.org.au/articles/education_for_people_living_with_epilepsy_1


Epilepsy
Action Australia provides an innovative, high quality service across Australia for people with epilepsy. Contact phone: 1300 37 45 37.


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 Alderton | Pharmacist | Sleep-Safe Anti-Suffocation Pillows
www.sleep-safe.co.uk