3rd March 2021 1 WABB Community Webinar Wolfram Alström amp Bardet Biedl Syndrome Welcome We will try to answer all of your questions but if there is anything we are unsure of we will get back to you after the webinar ID: 908579
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Slide1
Getting to grips with home monitoring equipment
3rd March 2021
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WABB Community Webinar (Wolfram, Alström & Bardet Biedl Syndrome)
Slide2Welcome
We will try to answer all of your questions but if there is anything we are unsure of, we will get back to you after the webinar
You will not be seen or heard during the webinar
Please type your questions in the chat box 3rd March 20212
Slide3Introduction to the Panel
Professor Tim Barrett, Birmingham Women & Children’s Hospital
Kirsty & Matilda Mobberley, Birmingham Women & Children’s Hospital
Rachel Nice, Royal Devon & Exeter NHS Foundation Trust Tracy Lynch, Wolfram Syndrome UK Ann Chivers & Kerry Leeson-Beevers, Alström Syndrome UK Tonia Hymers, Angela Scudder & Amy Clapp, Bardet Biedl Syndrome UK3rd March 2021
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Slide4Home Monitoring Equipment
Why are you being sent home monitoring equipment?
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Slide5Demonstration
Wolfram Syndrome
Blood pressure monitor
Blood glucose monitor – training will need to be provided by a local healthcare providerAlström & Bardet Biedl Syndrome Blood pressure monitor Talking weighing scales Tape Measure
Height measure (Stadiometer)
Kirsty & Matilda will demonstrate how to use the equipment Your equipment will be arriving shortly in the post Information and instructions will be sent out with the equipment and added to charity websites
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Slide6Equipment Instructions
Slide7IntroductionIn these few slides we hope to give you the basic instructions to get you started with your home monitoring equipment.Additional detailed information is in the instruction manuals provided.
Support may be needed to access the information in the instruction manuals as the writing is very small.
Slide8Blood Pressure Monitor
Slide9Blood Pressure Monitor Set UpPlace the 4 AA batteries provided in the back of the monitor.Click cuff into blue port on left hand side of monitor.Ensure screen is blank on blood pressure monitor. The monitor can record results for one or two people.Record your results on the sheet provided.
Slide10Taking your Blood PressurePlace cuff around left arm a couple of centimetres above elbow if possible.Position tubing to run down the centre of the inside of your arm.Press start!The result should come up on both the monitor and the app screen on your phone.Additional detailed information is in the instruction manual provided.
Slide11Position Of Cuff
Slide12Talking ScalesInsert the 3 AAA batteries provided.The left hand white button on the back of the scales is to change between units- kg/lbs/stones. Default is kgs.The right hand white button on the back of the scales is for the language option. Default is English.Underneath the buttons is a little black slider button which controls volume. Default is left which is high.
Slide13Weighing Scales
Slide14Back of the Scales
Slide15Taking Your WeightPlace scales on a hard flat surface and stand on them.The scales say hello and then read your weight to you.You can then record your result.The scales do not store any data.Try to take your weight at the same time of day (ideally morning) wearing similar clothing and no shoes.
Slide16Using Scales
Slide17Tape MeasureUse the measuring tape to measure your waist.The tape has raised rivets every inch and smaller ones at every half inch.The beginning of the tape has a single large raised rivet.The end of the tape has two large rivets.You can measure your waist counting the number of rivets.To make it a little easier at every 12 inches there are two rivets together to help you keep count.
Slide18Tape Measure
Slide19Stadiometer
Slide20Stadiometer for measuring heightTake your child’s shoes and socks offPlace the stadiometer against a vertical flat surface such as a wallStand your child up straight with his/her back to the
stadiometer, heels on the floor, hands by the sidesCheck that your child’s buttocks and back of the shoulders are resting against the stadiometer and the head is facing straight in front
Lower the flat horizontal plate down until it is touching your child’s headWrite down the reading on the stadiometer.
Slide21What To Do With Your ResultsPlease take all measurements monthly and record on sheet enclosed with equipment.Please take a photo, scan or post your sheet every three months to the medical Team.If you are concerned about your blood pressure reading please relax and then repeat.
Slide22Support
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Slide23Home Blood Sample Kits
It can be difficult to organise local blood tests before clinics
We now have a new service where blood sample kits are sent to your home
Full instructions are provided in the kitsA link to a short video explaining how to take your blood sample will be added to charity websiteshttps://www.exeterlaboratory.com/instructions/The sample needs to be taken from your child/young person’s finger
You will need to post your blood sample back in the envelope provided 3rd March 2021
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Slide24Questions
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Slide25Keep in touch!Wolfram, Alström and Bardet Biedl Syndrome UK are open and we are here for you
You can call or email us
We can arrange a video-chatFAQ’s and resources from todays webinar will be posted to our websites https://wolframsyndrome.co.uk/ http://www.alstrom.org.uk/family-support/
https://bbsuk.org.uk/
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