Liferaft Blog

Tips for SEN Teachers

Tips for SEN Teachers

 My Liferaft - Parent & Child

 

Even though we are only a few weeks through the school Summer holidays, many teachers, teaching assistants and parents will be thinking about school starting in September and the needs of the many children that will need additional support.

Talking to parents or carers is not always straightforward – and difficult conversations with parents of children with additional needs can sometimes become fraught for both sides. Nicola Murgatroyd, CEO and founder of MyLiferaft, knows how difficult these conversations can be as she cared for her daughter Faith, who had many complex medical and care needs, for over 20 years.

Know the needs

SEN teachers have regular conversations with parents and carers. Several say that they can find parents’ evening difficult, because some teachers do not seem to know or fully understand their child’s needs.

Understandably, it can get parents’ backs up when teachers say things like, “he needs to work on his spellings” when the child has a diagnosis or dyslexia. Equally, give, “she needs to learn to concentrate more”, a miss when speaking to the parent of a child with ADHD.

Parents are well aware of their child’s diagnoses, difficulties and differences. What they want to hear is what actual progress has been made and what strategies could help their child to progress further.

Watch your wording

Be mindful of your language. Avoid using words such as “slow” or “behind”, as these can have negative connotations. Replace them with “needs additional thinking time” or “is catching his peers up”.

Be positive

Parents of children with additional needs can, unfortunately, be used hearing a lot of negative feedback. So, try to start with something positive if you can – and be genuine as there is nothing worse than a disingenuous compliment. A good mantra to try and remember is “always start with what the child can do, not what they can’t”.

Keep the ‘teacher voice’ in check

Teachers are used to having to make quick judgements about situations and exerting authority which is mostly fine in the classroom. However, it helps to not apply the same approach when talking to parents. Some parents may have had very bad experiences of school and could be apprehensive about meeting you. It is essential for the child, the parents and the school that you get these parents on side – and quickly.

Be sensitive

Remember that parents of children with SEND may be facing all kinds of challenges. Some will have had a battle in securing provision for their child and therefore may be more sensitive to any changes in that provision. A few may have taken time to accept the fact that their child has additional needs or even still be grieving for the child they thought they were going to have. The bottom line is that you do not know what it is like to be in their shoes (unless you have a child with additional needs), so the best thing you can do is be prepared to listen and to offer supportive ways of working together.

How can MyLiferaft Help?

 

MyLiferaft

 

As Nicola said “My personal experiences gave me a first-hand insight into the problems and challenges faced by parents in caring roles. I realised that gaps in knowledge between parents, carers, education and medical professionals became huge issues, and wished there was something I could use to hold everything we as a family knew in one place. Nothing can ever really prepare you for parenthood, and caring for a child with additional needs carries extra challenges. However there are ways to make life easier for everyone whatever their circumstances, and that’s what we have created with MyLiferaft – a tool which helps to manage all aspects of modern day living.”

If you are a parent carer, then read the dedicated page we have on our website to find out more about how MyLiferaft can help you.

If you are a teacher, watch Sophia’s Story to see why Nicola Murgatroyd feels so passionately about MyLiferaft

Sign up for a FREE MyLiferaft Premium Account today!

Resources for SEN Teachers

 

MyLiferaft - Caring Support Tool - Resources

 

Summer Holiday Activities!

Summer Holidays!

In the infamous words of Alice Cooper…..schools out for Summer!!  No more school run, no more missing pencil cases, no more cry’s of ‘where is my sports kit / recorder / packed lunch / homework’ – tick as appropriate!

 

MyLiferaft - School Holidays

Activities

You’ve made it through the school year and now you have a long, hot (hopefully!) Summer trying to think up activities to keep everyone happy – including you!  Whether you are a working parent, or a stay-at-home parent, it pays to plan ahead if you can.  Lots of the activities we talk about are suitable for children with additional needs or learning difficulties.  Be led by your child’s imagination – and of course the weather!

MyLiferaft have a great section in their Resources for ideas and suggestions to help you through the next few weeks, however here are a few more to add to the list!

  • Have a Mini-Masterchef competition and make sure you include tidying up as part of the end result!
  • Create some puppets out of old socks and let the children make up a puppet show for you
  • If the weather is not so great, pull the curtains, get out the pop-corn and have a movie afternoon at home
  • If you have a garden, vegetable plot or allotment, get the children to help with the digging, weeding and collecting your harvest
  • Use the internet to find what you have in your kitchen to make up science experiments (this one is a favourite with one of the Dad’s in the MyLiferaft team!)

Keeping Cool

 

MyLiferaft - Ice Lolly

 

Hopefully the sunshine that we experienced in June and July will continue into the school holidays….!  There have been lots of Top Tips on the television, radio and in newspapers about keeping cool, however here are a few more from the team here:

  • Half fill children’s water bottles with ice-cubes so they stay cooler for longer
  • Use freezer ice sachets in picnic and packed lunches to keep food cold if freezer blocks are too large
  • Keep sun-tan and after-sun in the fridge (this is a favourite of the team!)
  • Join your children in the paddling pool, even if you just dip your feet in! The water can also be used for watering plants, so you are even recycling as well as staying safe!
  • Fill a hot water bottle……wait for it……….with ice cubes & cold water!

Other Activity Resources

The Imagination Tree 

Henry Organisation 

Money Saving Expert 

Change For Life 

The Mum Educates 

Be A Fun Mum 

About MyLiferaft

 

MyLiferaft

 

MyLiferaft is a way to stay on top of all the information that comes with caring for your child – and share it with the people who need it.  It’s a secure place online where you can keep and update all the details about your child’s health, care and well-being. Using a tablet, laptop or phone, you can keep your care network up to date, on screen or on paper. You decide who gets what information and when.

MyLiferaft was created by technology entrepreneur Nicola Murgatroyd. Her eldest daughter had complex special needs and Nicola faced real problems managing her care effectively.  “My personal experiences gave me a first-hand insight into the problems and challenges faced by parents in caring roles. I realised that gaps in knowledge between parents, carers, education and medical professionals became huge issues, and wished there was something I could use to hold everything we as a family knew in one place.  Advances in technology mean that there are now ways to make life easier for everyone, whatever their circumstances, and that’s what we have created with MyLiferaft – an online tool to manage all aspects of modern day living.”

To try a MyLiferaft Premium Account for FREE, click here

Find Out About MyLiferaft

MyLiferaft

MyLiferaft is a way to stay on top of all the information that comes with caring for your child or loved one – and share it with the people who need access to that information.  It’s a secure place online where you can keep and update all the details about your child’s health, care and well-being. Using a tablet, laptop or phone, you can keep your care network up-to-date, on screen or on paper. You decide who gets what information and when.

 

MyLiferaft

 

MyLiferaft was created by technology entrepreneur Nicola Murgatroyd. Her eldest daughter had complex special needs and Nicola faced real problems managing her care effectively.  “My personal experiences gave me a first-hand insight into the problems and challenges faced by parents in caring roles. I realised that gaps in knowledge between parents, carers, education and medical professionals became huge issues, and wished there was something I could use to hold everything we as a family knew in one place.  Advances in technology mean that there are now ways to make life easier for everyone, whatever their circumstances, and that’s what we have created with MyLiferaft – an online tool to manage all aspects of modern day living.”

How can MyLiferaft help a Parent Carer?

Parent carers are on their feet all day every day and have to keep endless amounts of information about their child to hand, usually on bits of paper, in notebooks, in their head, in care files and many other places, including on the fridge door!  Keeping track of everything and updating information with changes and progress is hard work. MyLiferaft is a simple, easy to use, online tool, that can help parent carers store, organise and manage all the information they have about their child – personal information, medical history, likes/dislikes, and much more.

By storing key information about your child in MyLiferaft, you instantly benefit from:

  • No longer needing to repeat yourself to multiple people in your child’s care network
  • Finding information quickly and easily to fill in documents, forms, assessments
  • Being better prepared for meetings and assessments
  • Keeping your child’s care network up to date with their health and wellbeing progress and changes
  • Supporting and enabling your child to lead a fuller life

With MyLiferaft, parent carers have more control over the information about their child and can be involved in key decisions about their care. The child will benefit by feeling looked after and supported by people who understand their needs, likes and dislikes. Features within MyLiferaft can ensure consistency in your child’s care and support them when transitioning. As the parent carer, you can decide who to share information with about your child; enabling you to work with carers, support workers and professionals so that you can determine together what goals and targets to set.

 

MyLiferaft - Caring Support Tool

 

How can MyLiferaft help individuals?

Individuals who are living independently and/or managing their care themselves are likely to have information about their health and care needs stored in files, pieces of paper, notebooks to name a few. They are trying to manage their daily life, keeping up with appointments, filling in endless forms and repeating their needs and medical history to multiple healthcare professionals.

By storing all this information in MyLiferaft, the individual has all their care, health and well-being information (current, historical and future) in one place. With MyLiferaft they:

  • Are prepared with up-to-date information that can be accessed before, during and
    after assessments and meetings
  • Have consistent, timely, accurate information that can be shared amongst their care team to ensure the best quality of care
  • Decide what information they share, with whom, and when; either online or in a report
  • Can communicate with their care and social network and help them to understand their needs better
  • Record, track and monitor changes in health, mood, activities
  • Set their own goals and monitor progress

 

MyLiferaft - Individual

Key Features of MyLiferaft

MyLiferaft is a secure, online filing system for organising, managing and tracking personal, health, well-being and care information about an individual or a person being cared for. Once stored in MyLiferaft, this information can be accessed from home, whilst in a healthcare meeting or out with a friend, using a pc/desktop, laptop, tablet, phone.

Health and well-being information is constantly changing, and by using MyLiferaft, you can ensure information about your needs or the person you are caring for, can be continuously updated and added to. But MyLiferaft is more than a static filing system, some of the features include the ability to:

  • Create Care Circles and Social Circles – enabling you to share information with the people who support and care for you or your child
  • Create Goals, Actions and Reviews to manage progress and achievements
  • Easily access information to complete documents, assessments, and pre-populate forms (such as the DLA)
  • Share contact information between your care team through messaging, alerts and notifications
  • Set data Trackers to monitor repeat measurements (mood, blood glucose, peak-flow, calories etc.)
  • Share information and reports with your Care and/or Social circles in real-time or by email
  • Enter information using Voice Dictation on tablet or mobile devices
  • Share Calendar information to ensure everyone is aware of appointments and events
  • Lookup upcoming Events and use our online Resource database to help you get the best out of your life
  • Add social media accounts and they will update automatically

MyLiferaft is continually developing. Some of the features coming soon include …

  • Mobile access and document management on the go – upload documents wherever you are so you can organise, update, track and manage your paperwork
  • Access and record information with Alexa – giving you and your care team easy access to details and a simple way to keep information up to date
  • Enhancements to Social and Care Circles including shared To-Do and Task Lists

For more information about MyLiferaft and to see if it can help you, watch Sophia’s Story on our website.

You can try MyLiferaft for FREE – just click here.

Click here to contact a member of the MyLiferaft team if you have any questions.

 

MyLiferaft and Barnet & Southgate College

BARNET AND SOUTHGATE COLLEGE PARTNERS WITH ‘MYLIFERAFT’

Barnet and Southgate College is pleased to announce a new partnership with ‘MyLiferaft’ as part of its on-going development of the Centre of Excellence for Technology Enhanced Care (CETEC), which opened in September 2017.

MyLiferaft - BSC

 

MyLiferaft has created a work and study area within the College’s ‘Living Lab’ to demonstrate how their online application can support those with long-term care needs. The ‘Living Lab’ is based at the Southgate campus and offers stakeholders the chance to ‘come and play’ within the fully-furnished flat, which is equipped with all the latest assisted technology equipment.  The Living Lab is where much of the teaching and assessment happens for current health and social care students. It’s also available to use by local authorities and carers to further understand assisted living technologies, to help maintain the independence of their patients. The facility at the College is also used to showcase new and evolving technologies to support innovation within the industry and provides specialist training to incorporate assisted living telehealth and telecare into patient care pathways.

Firas Sarhan is the Director and lead academic for the Centre of Excellence for Technology Enhanced Care (CETEC) at Barnet and Southgate College, he said:

“Our aim is to deliver tailored assistive technology which can support the needs of individuals with long term conditions who are living in the community, our new partnership with My LifeRaft will do this. Or ultimate aim is to ensure safe, high quality care to improve the quality of life of a patient; through a better understanding of their medical condition to assist with their integration into society or living more independently. The CETEC team at the College is continually developing new working practices with the support of partner organisations and educational research programmes to support the delivery of technology enhanced health and social care services.”

MyLiferaft - CETEC

 

About MyLiferaft

Created by technology entrepreneur Nicola Murgatroyd who faced real problems managing the care of her daughter who had complex special needs, MyLiferaft was designed to support those within a care circle.  It offers a way to stay on top of all the information that comes with caring for a child or loved one, and to share it with the people who need it.  It’s a secure place online where all the details about your loved one’s health, care and well-being are stored. Through a tablet, laptop or phone, you can keep your care network up to date, on screen or on paper. You decide who gets what information, and when.

Nicola Murgatroyd, Founder & CEO of MyLiferaft said:

“This is a very exciting time for assistive technology within the social and care environment.  New ways of supporting those in need and those that care for them are being designed and launched almost weekly and we are delighted to be working with Barnet and Southgate College through their Living Lab to drive this change forward.”

MyLiferaft

 

http://www.barnetsouthgate.ac.uk/cetec

http://www.myliferaft.com

 

MyLiferaft and UKTelehealthcare

MyLiferaft and UKTelehealthcare

MyLiferaft are excited to become a member of UKTelehealthcare and to work with them and other members to bring assistive technology into the wider market.

Matthew Haigh, CTO at MyLiferaft said “In working with UKTHC, we can help ensure suppliers of care technology work together to advance assistive technology in the healthcare arena”.

See MyLiferaft at the UKTelehealthcare Smart Care Technology Marketplace Event at Hackney Town Hall on 12th July.  For details, click here.

About UKTelehealthcare

 

MyLiferaft - UKTHC

 

UKTelehealthcare is the independent and impartial membership organisation for Telecare and Telehealth professionals, service providers, Clinical Commissioning Groups, Registered Social Landlords, suppliers and organisations with a related professional interest.  Our mission is to support health and care professionals and suppliers to deliver the widest choice and range of appropriate Technology Enabled Care Services (TECS) to patients, service users and their carers, and to raise awareness and encourage the use of technology.

For more information, click here.

About MyLiferaft

 

MyLiferaft

 

MyLiferaft was created by technology entrepreneur Nicola Murgatroyd. Her oldest daughter had complex special needs, and Nicola faced real problems managing her care effectively.  MyLiferaft is way to stay on top of all the information that comes with caring for your child – and share it with the people who need it.  It’s a secure place online where you can keep and update all the details about your child’s health, care and well-being. Through a tablet, laptop or phone, you can keep your care network up to date, on screen or on paper. You decide who gets what information, and when.

For more information, click here.

Learning Disability Week

Learning Disability Week

Supported by the charity Mencap, Learning Disability Week is running from 18 to 24 June with this year’s campaign focusing on health and their campaign, Treat Me Well.

 

MyLiferaft - Learning Disability Week

 

This week is a brilliant opportunity to raise awareness about the problems and issues people with a learning disability can face when having to spend time in hospital and what we can all do to help change this.  If we can work together with NHS staff, we can:

  • Raise awareness of disabilities
  • Share good practice
  • Make improvements where needed

Who are Mencap?

Mencap are one of the leading charities supporting and raising awareness for those that experience learning disabilities.  Everything they do is about valuing and supporting people with a learning disability, and their families and carers.

Their vision is for all people with a learning disability to be valued equally, listened to and included.  Right now, people with a learning disability face inequalities in every area of life.  Mencap feel that by tackling the issues head on through ongoing campaigning and the delivery of high quality support and services to the people who need us, they will be able to make a difference

To find out more about Mencap, click here.

Treat Me Well

Did you know that 1,200 people with a learning disability die avoidably in the NHS every year? This shocking fact is from Mencap and highlights the poor healthcare that many people face.  They are hoping to make a real change so people with a learning disability always get the treatment they need in hospital.  Sometimes, it can even be as simple as medical staff making reasonable adjustments in their care of patients:

  • Better communication between medical staff and patients
  • Clearer information given between patients, medical staff and vica versa
  • More time being spent on understanding patient needs

 

MyLiferaft - TreatMeWell

 

You can support Mencap’s Treat Me Well campaign by signing up on their website

How are Liferaft supporting Treat Me Well?

The Hospital Passport is an NHS initiative to help those with learning difficulties and is designed to give hospital staff helpful information that isn’t only about illness and health. It can sometimes be given a different name, like “personal record” or “my biography”, and may look different from hospital to hospital, but it is the information in it that is key to supporting the individual.

It’s about giving individuals who find it difficult to let others know how they like to be supported, what their likes and dislikes are, what help they need/don’t need, and generally have their voice heard, making their time in hospital more comfortable for the individual and their family.

MyLiferaft - Hospital Passport

 

When using a Liferaft Premium Account, you only need to add all your critical information once and update it when something changes.  This same information can then be used to create different reports, of which the Hospital Passport is one.  You can then either download the Hospital Passport and take it with you as a printed copy or email the Hospital Passport to the person who is helping you.

Liferaft is proud to be supporting Learning Disability Week by offering the first 50 people to sign up to receive the Liferaft newsletter and type “Learning Disability” into the comment box a Premium Liferaft License free for 6 months.

To find out more about Liferaft’s Hospital Passport, click here.

If you want to try a Liferaft account you can sign up for a no obligation trial.

MyLiferaft - Caring Support Tool - Logo

Carers Week 2018

Carers Week

Did you know that 6.5 million people in the UK are carers?  That is 1 in every 8 adults.  Did you also know that every day, another 6,000 people take on a caring role?

MyLiferaft - Carers Week

What is Carers Week?

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK.

The campaign is brought to life by thousands of individuals and organisations who come together to organise activities and events throughout the UK, drawing attention to just how important caring is.

The focus for this Carers Week is to help and support carers to stay Healthy and Connected as the impact on caring for someone should never be under estimated.  Caring can be a hugely rewarding experience, but sometimes carers find it challenging to take care of their own well-being whilst caring.  So this Carers Week is looking to share examples of good practice from supporters who have helped carers to stay Healthy and Connected.

To find out more, click here

MyLiferaft - Carers Week

How can you help?

The team at Carers Week would like you to pledge your support for carers around the UK by recognising and celebrating the huge amount of work that carers do every day.  Whether you are an individual, an organisation, a carer, someone from the within the health care profession or even a politician, click here to shout about your pledge.

Carers Week and Liferaft

Liferaft are thrilled to be supporting Carers Week this year and are offering the first 100 carers that sign up for our Newsletter, a FREE Premium Account for a year.  Visit our website and type the keyword CarersWeek into the comments box.

MyLiferaft - Caring Support Tool

About Liferaft

Nicola, the founder of Liferaft, was a carer for her daughter Faith as well as being a wife and a working mother to two additional children.  She understands the world of being a carer and set about designing a tool to support you, your child or the person that you care for.

“I realised that gaps in knowledge between parents, carers, education and medical professionals became huge issues, and wished there was something I could use to hold everything we as a family knew in one place. Nothing can ever really prepare you for caring for a loved one with additional needs.  However, there are ways to make life easier for everyone whatever their circumstances, and that’s what we have created with Liferaft – a tool which helps to manage all aspects of modern day living.”

 

Liferaft allows you to:

  • Be more in control
  • Avoid repeating yourself to different people in your care network
  • Find information quickly and easily to fill in forms to be prepared for meetings and assessments
  • Keep your care network up to date on what your loved one’s needs and progress
  • Worry less about what would happen if you weren’t there
  • Have more time for your own activities, and feel supported
  • Support your loved one to lead a fuller life and stay well
  • Manage the changes that happen throughout your loved one’s life

 

Additional Resources

Liferaft Resources for Carers

Carers Week – https://www.carersweek.org/

Carers UK – https://www.carersuk.org/

Carers Trust – https://carers.org/

Hospital Passport

The Hospital Passport

 

Going into hospital is a worrying time for any of us. It can be even harder for someone who has a learning disability.

The Hospital Passport is an NHS initiative to help those with learning difficulties and is designed to give hospital staff helpful information that isn’t only about illness and health. It can sometimes be given a different name, like “personal record” or “my biography”, and may look different from hospital to hospital, but it is the information in it that is key to supporting the individual.

It’s about giving individuals who find it difficult to let others know how they like to be supported, what their likes and dislikes are, what help they need/don’t need, and generally have their voice heard, making their time in hospital more comfortable for the individual and their family.

 

MyLiferaft - Hospital Passport

 

What information is included in my Hospital Passport?

You will often find that you repeat the information a Hospital Passport contains over and over when talking to a member of your care circle or support team, with information including:

  • Emergency contact details
  • Your likes and dislikes
  • The amount of physical contact you’re ok with
  • What you liked to be called
  • How you communicate and like to be communicated with
  • What distresses you and how to avoid being distressed
  • How I move around
  • How I let you know when I’m in pain

The passport helps people know how to make you feel comfortable.  It doesn’t do away with conversations, but it does go a long way to making sure those conversations are more meaningful and focused.

 

What other names can a Hospital Passport be called?

 You may also hear the Hospital Passport referred to as:

  • A Personal Record
  • All About Me
  • My Biography
  • Get Me Better

What does it look like?

Below are two examples of what a Hospital Passport could look like.  It is always best to ask the hospital you are attending if they have their own version.  In some cases, specific charities also have their own dedicated Hospital Passports, like the National Autistic Society here.

Don’t forget – it is not about what the Hospital Passport looks like, but the information that is in it.

 

MyLiferaft - Hospital Passport                       MyLiferaft - Hospital Passport

 

How does using Liferaft help me complete my Hospital Passport?

When using a Liferaft Premium Account, you only need to add all your critical information once and update it when something changes.  This same information can then be used to create different reports, of which the Hospital Passport is one.

Below is for an example of the Hospital Passport that has been created using Liferaft:  Hospital Passport

You can:

  • Downloaded the Hospital Passport and take it with you as a printed copy
  • Email the Hospital Passport to the person who is helping you

If you want to try a Liferaft account you can sign up for a no obligation trial.  If you are a parent carer, first set up an account for yourself and you will be guided on how to set up and manage an account for your child.

 

Other Useful Links:

NHS Choice – Going into hospital with a learning difficulty – https://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Going-into-hospital-with-learning-disability.aspx

Royal Free London – Patients with a learning disability –  https://www.royalfree.nhs.uk/patients-visitors/disabled-facilities/patients-with-a-learning-disability/hospital-passport/

 

MyLiferaft - Caring Support Tool

Epilepsy Awareness Week

Epilepsy Awareness Week

Today marks the start of Epilepsy Awareness Week with activities going on around the country raising awareness and funds for research.  Approximately 600,000 people in the UK have epilepsy and 87 people every day will be diagnosed with it (Epilepsy Action).  Did you know that St Valentine is the patron saint of epilepsy and that Roman Emperor Julius Caesar and the artist Vincent Van Gogh had epilepsy?!

 

MyLiferaft - Epilepsy

 

What is epilepsy?

Epilepsy is a condition that affects the brain. When someone has epilepsy, it means they have a tendency to have epileptic seizures.  Anyone can have a one-off seizure, but this doesn’t always mean they have epilepsy. Epilepsy is usually only diagnosed if someone has had more than one seizure, and doctors think it is likely they could have more.  Epilepsy can start at any age and there are many different types. Some types of epilepsy last for a limited time and the person eventually stops having seizures. But for many people epilepsy is a life-long condition.

What are epileptic seizures?

Electrical activity is happening in our brain all the time, as the cells in the brain send messages to each other. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works. The result is an epileptic seizure.

There are many different types of seizure. What happens to someone during a seizure depends on which part of their brain is affected. During some types of seizure the person may remain alert and aware of what’s going on around them, and with other types they may lose awareness. They may have unusual sensations, feelings or movements. Or they may go stiff, fall to the floor and jerk.  For more on the different types of seizures, see the Epilepsy Action website

What causes epilepsy?

Sometimes, doctors can find a clear cause for a person’s epilepsy. Possible causes of epilepsy include:

  • Stroke
  • A brain infection, such as meningitis
  • Severe head injury
  • Problems during birth which caused the baby to get less oxygen

However, in over half of all people with epilepsy, doctors don’t know what caused it. Some may have a family history of epilepsy, suggesting that they may have inherited it. Scientists are trying to find out more about how epilepsy might be inherited.

The main way doctors diagnose epilepsy is by taking a detailed description of the seizures. They may also arrange for some tests to help give them more information about the possible type and cause of the epilepsy. This can also help rule out any other conditions that could be causing seizures. These tests can include blood tests, an EEG (recording of the brainwaves) and brain scans. But there isn’t a single test that can prove if someone does or does not have epilepsy.

Can epilepsy be treated?

The main treatment for epilepsy is epilepsy medicines. These are sometimes called anti-epileptic drugs or AEDs. The medicine doesn’t cure epilepsy but helps to stop or reduce the number of seizures.  If epilepsy medicine doesn’t work well for someone, their doctor might suggest other types of treatment – these can include brain surgery, another type of surgery called vagus nerve stimulation, and a special diet called the ketogenic diet which is sometimes used for children.

Resources

There are some great websites focusing on epilepsy giving advice, support, training and information.  They also include information for children and schools explaining the different types of seizures through the eyes of children (https://www.epilepsy.org.uk/info/children) as well as the not so common question of ‘can I go sky diving if I have epilepsy’!

Epilepsy Society – https://www.epilepsysociety.org.uk/

Young Epilepsy – https://www.youngepilepsy.org.uk/

Epilepsy Action – https://www.epilepsy.org.uk/

Epilepsy Research UK – https://www.epilepsyresearch.org.uk/

Epilepsy Scotland – http://www.epilepsyscotland.org.uk/

How can Liferaft help?

Within Liferaft there are many features to support collection of information that can help those with epilepsy and those looking after them.

MyLiferaft - Seizures

  • Add a diagnosis of epilepsy
  • Describe each different type of seizure experienced
  • Use the seizure tracker to record each seizure, using notes to give more detailed information.
  • Keep a record of all tests and the results
  • Keep a record of all consultations and what was discussed.
  • Add medications including emergency meds
  • Create a goal related to reducing seizure frequency
  • Share information with your doctor, family friends

Sharing the information with health, care professionals will help ensure individualized treatment and care options can be developed.

For more information on Liferaft and to try a Premium Account for FREE, click here.

 

Lola & Frankie’s Story

Lola & Frankie’s Story

Over the course of a month, Liferaft supports several campaigns through social media and our blog.  As a result, we often come across stories that make us laugh, make us cry and sometimes, just make us stop and think.  However, it is very rare to come across a story that does all three, so we wanted to share with you this inspiring story.

Lola has been fundraising for the National Autistic Society for the last 4 years as her uncle Frankie was diagnosed with Autism.  With the help of ‘Team Lola’ led by her mum Holly, she has organised various events from baking, dressing up & wacky hair days.  Lola has raised over £500 during this time which is amazing, but what is even more amazing is that Lola is 10 years old, which means she started fund raising when she was just 6!

Frankie’s Story

Frankie is 19 and was diagnosed with autism when he was 3 years old.  He attends Greenfields School in Merthyr Tydfil whose motto is ‘Opening Doors to the Future’ and will be transitioning at the end of the Summer term – a difficult time for all families where a child has additional needs.  When Frankie was diagnosed, it was recognised that his autism was very severe, so from an early age it defined who he was and what he was able to do.  As a result, his family had to adapt very early on and they continue to adapt as Frankie’s needs as an adult change.

 

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Despite all of this, Frankie loves being outside in the fresh air, so his family have put together different activities that ensure Frankie gets out as much as possible.  His favourite is his weekend respite trips to a local farm where he gets fully immersed in all the farming activities, including the mucking out!  The wider family are involved in Frankie’s care to ensure that he is active and safe and that everyone gets a ‘time out’ – something that is incredibly important for everyone in Frankie’s circle of care and we’re sure will strike a chord for others who are in a similar position.

Lola’s Story

The first time that Lola decided to raise money for charity was at the hairdressers aged just 6 – when most little girls are longing for Rapunzel type hair, Lola decided to cut off 7 inches and donate it to the Little Princess Trust!  The Trust make wigs for children with cancer out of donated real hair.  She raised £122 and is considering doing it again later this year now that her hair has grown back!

Lola was aware that Frankie had autism from around 5 years of age and that he was different, however she has always been totally at ease with him and appreciates that he is ‘different not less’.  She started baking to raise awareness and money, which then led on to Wacky Hair days that have been supported by Lola’s school!  And in answer to the obvious question – YES – Lola’s hair remained held up by the balloons all day at school!

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What Can We Do

When we asked Holly and Lola what more could be done to support individuals like Frankie and their families, they were very clear:

  • More awareness and support need to be given to families where a young adult is going through transition
  • More opportunities need to be given to adults with autism as they have so much to offer
  • Learn how to communicate with people who have autism and treat them as individuals as they go about their daily lives; please don’t stare at people who are different to you
  • We should be teaching children at primary and secondary schools about people with additional needs and that they are ‘different not less’ as this will raise awareness at an early age and reduce the amount of bullying that takes place

Resources

The National Autistic Society – http://www.autism.org.uk/

My family Your Needs – https://www.myfamilyourneeds.co.uk/

Little Princess Trust – http://www.littleprincesses.org.uk/

Liferaft Autism Resources – https://www.myliferaft.com/more/resources/#autistic-spectrum-including-autism-and-aspergers-syndrome

About Liferaft

Liferaft was created by technology entrepreneur Nicola Murgatroyd. Her oldest daughter had complex special needs, and Nicola faced real problems managing her care effectively.  “My personal experiences gave me a first-hand insight into the problems and challenges faced by parents in caring roles. I realised that gaps in knowledge between parents, carers, education and medical professionals became huge issues, and wished there was something I could use to hold everything we as a family knew in one place. Nothing can ever really prepare you for parenthood and caring for a child with additional needs carries extra challenges. However, there are ways to make life easier for everyone whatever their circumstances, and that’s what we have created with Liferaft – a tool which helps to manage all aspects of modern day living.”

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MyLiferaft - Inclusion