Night Time Monitoring Programme me

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1 Information Brochure Night Time Monitoring Programme me Registered Charity

Epilepsy Lifestyle Epilepsy Lifestyle aims to improve the lives of children and adults diagnosed with epilepsy, by

Established in March 2014, Epilepsy Lifestyle initially supported children and adults with epilepsy in and around

Due to the success of the charity on 26th March 2016, exactly two years after first establishing, Epilepsy Lifestyle

Night Time Monitoring Programme Epilepsy Lifestyle gives patients and their families a choice of a number of

of equipment is chosen specifically for their circumstances and type of epilepsy.

monitor/sleeping solution, or parent carer, must be in receipt of either: Child Tax Credits Income Support Employment

2 Epilepsy Lifestyle Epilepsy Lifestyle aims to improve the lives of children and adults diagnosed with epilepsy, by providing potentially life saving sleeping/ monitoring equipment. Established in March 2014, Epilepsy Lifestyle initially supported children and adults with epilepsy in and around East Sussex. In September of 2015 Epilepsy Lifestyle branched out into West Sussex and Brighton and Hove. Due to the success of the charity on 26th March 2016, exactly two years after first establishing, Epilepsy Lifestyle launched nationally, supporting children and adults with any form of epilepsy across the United Kingdom. Night Time Monitoring Programme Epilepsy Lifestyle gives patients and their families a choice of a number of different monitors/sleeping solutions, working with beneficiaries and suppliers to ensure the most appropriate piece of equipment is chosen specifically for their circumstances and type of epilepsy. Eligibility criteria: To be eligible to receive support from Epilepsy Lifestyle the person receiving the monitor/sleeping solution, or parent carer, must be in receipt of either: Child Tax Credits Income Support Employment Support Allowance You will need to provide a copy of the award letter for any one of the above benefits, along with a copy of a letter from a medical professional stating the epilepsy diagnosis of the person receiving support from Epilepsy Lifestyle. 2

Brio A person s heart rate can be an accurate method of detecting seizures as the heart rate can significantly change just prior or during seizure activity.

The heart rate data is sent from the sensor to the Brio app which can be downloaded on an Apple or Android device and will send an alert.

activity. All seizure data is recorded on the app, which can be downloaded and shared with medical professionals.

Epilepsy Lifestyle will fund a standard baby monitor if you do not currently have a listening device, i.e. a baby monitor or bluetooth speaker in the user s bedroom.

3 Brio A person s heart rate can be an accurate method of detecting seizures as the heart rate can significantly change just prior or during seizure activity. Brio monitors a user s heart rate by means of a wrist sensor. The heart rate data is sent from the sensor to the Brio app which can be downloaded on an Apple or Android device and will send an alert. The Brio app allows you to set low and high heart rate parameters, and if the heart rate falls outside of this zone the app will raise an audible alert, signalling possible seizure activity. All seizure data is recorded on the app, which can be downloaded and shared with medical professionals. Epilepsy Lifestyle will fund the Brio package, which consists of two wrist watches and the downloadable app. Epilepsy Lifestyle will fund a standard baby monitor if you do not currently have a listening device, i.e. a baby monitor or bluetooth speaker in the user s bedroom. We do not fund the Apple or Android device to accompany the Brio. Wrist watch is not particularly invasive and is easy to set up App can be used on either Apple or Android devices Seizure data can be shared with medical professionals The Apple or Android device needs to be used solely with the Brio and left in the room with the user it can not be used on your own phone or ipad/ tablet. Epilepsy Lifestyle can not fund an Apple or Android device to accompany the Brio It monitors heart rate only and not oxygen levels 3

Pulse Oximeter Machine Epilepsy Lifestyle will fund the entire Pulse Oximeter Package,

ten disposable sticky probes and 3 soft reusable probes.

When someone has a seizure their heart rate may increase and their oxygen levels may

The Pulse Oximeter Machine allows you to set low and high heart rate and oxygen parameters

audible alert, signalling possible seizure activity.

It monitors heart rate and oxygen levels Parameters can be set to suit each individual

4 Pulse Oximeter Machine Epilepsy Lifestyle will fund the entire Pulse Oximeter Package, which includes the monitor, power supply, lithium battery, protective cover, one box of ten disposable sticky probes and 3 soft reusable probes. A Pulse Oximeter Machine monitors a person s heart rate and oxygen levels. When someone has a seizure their heart rate may increase and their oxygen levels may decrease. The Pulse Oximeter Machine allows you to set low and high heart rate and oxygen parameters and if the heart rate and/or oxygen falls outside of this zone the monitor will raise an audible alert, signalling possible seizure activity. The monitor attaches to the user by a sticky probe, generally placed on the toe. It monitors heart rate and oxygen levels Parameters can be set to suit each individual user It is portable and can be used wherever the user is sleeping The probe can be quite invasive for some users It is not ideal for very mobile users, or those who get out of bed during the night Can take some time to set up and get used to and there is an ongoing cost for probes 4

5 Alert-it Companion Mini Currently the smallest and most discreet epilepsy sensor available, the Companion Mini is designed to monitor movements caused by Tonic Clonic seizures. It is highly portable and can be placed under a mattress, chair cushion or wheelchair cushion to monitor movement and send an alert to a pager up to 450m away. It has no wires, is battery operated and easy to setup and operate. The sensor lasts one year before you have to change the AA batteries, making it low cost to maintain. Easy to use and maintain Portable Alerts to a pager within a 450m range Detects Tonic Clonic seizures only No sensitivity settings May not be suitable for those with complex epilepsy Breathe-ZY Anti- Suffocation Pillow Breathe-ZY Anti-Suffocation Pillow The Breathe-zy Anti-Suffocation Pillow is a Class 1 Medical Device which is designed to be breathable, practical and comfortable. The cover is fully removable, and is machine washable. Can be used in conjunction with seizure monitoring Is often chosen if other forms of seizure monitoring are not suitable Ideal for adults who have well controlled epilepsy Will not alert to seizure activity Not suitable for babies or younger children Not particularly suitable for those with complex epilepsy 5

Alert-it Companion This premium system is designed

will detect sustained movements associated with

Once a seizure is detected the Companion will send

The pager lasts up to three days on one charge and

The Companion has sensitivity settings allowing

Epilepsy Lifestyle will fund the standard package,

Additional bed occupancy sensors are available

Has an internal microphone to alert to sounds

convulsion Ability to set personalised sensitivity

6 Alert-it Companion This premium system is designed to monitor Tonic Clonic seizures in a fixed location. The wired sensor is placed under a mattress and will detect sustained movements associated with seizures. Once a seizure is detected the Companion will send an alert to the pager, which has a 450m range. The pager lasts up to three days on one charge and will receive alerts even if it is charging. The Companion has sensitivity settings allowing you to adjust the delay period before it alerts. Epilepsy Lifestyle will fund the standard package, which comes complete with the pager system. Additional bed occupancy sensors are available upon request. Has an internal microphone to alert to sounds associated with seizures, even if there is no convulsion Ability to set personalised sensitivity settings Alerts to a pager within a 450m range Generally detects Tonic Clonic seizures only Is not particularly portable Can take some time to set the most appropriate sensitivity setting for the particular user 6

7 Digital Video Monitor Epilepsy Lifestyle will provide a digital video monitor, which will enable parent carers to keep an eye on the user and listen out for possible seizures. The digital video monitor is not a seizure monitor and is not intended to be used as one. Can be used in conjunction with seizure monitoring Can be used to keep an eye out during daytime activities Is often chosen if other forms of seizure monitoring are not suitable Will not alert to seizure activity Could be considered an invasion of privacy, especially with older users Only to be used as a listening/viewing aid 7

How to apply Visit www.epilepsylifestyle.org.

8 How to apply Visit application-form to fill in an online application form Contact us on the phone number or address below to request an application form If you are filling in the online form you can either post your supporting documents (see the inside cover of this brochure for information on eligibility criteria) to the address below or copies of them to the address below If you are sending your application by post you can include photocopies of the supporting documents with your application Important things to note We can only provide one piece of equipment per person so please think carefully about which system would work best for you and/or your family. If you are at all unsure please contact us An application can not be processed until we receive a completed application form, a copy of a letter from a medical professional that states the user s epilepsy diagnosis and a copy of the award letter in respect of the qualifying benefit. Incomplete applications will only be looked at once all other applications have been processed We are a very small charity receiving no statutory funding, therefore we may have to impose a waiting list at times. If this does happen you will be notified as soon as your application is being processed. Contact us PO Box 3204, Eastbourne, East Sussex BN21 9QT E: info@epilepsylifestyle.org.uk T: W:

Epi-Care Wrist Sensor

epilepsyalarmsuk Connected freedom Introducing the exclusive Epi-Care Wrist Sensor Thank you for ordering this information pack Epilepsy affects over 600,000 people in the UK. There are many different