Dementia Action Week

Many of us worry about ‘saying the wrong thing’ to someone with dementia, yet a friendly face or listening ear can make the world of difference.  This Dementia Action Week, the Alzheimer’s Society are encouraging everyone to take action by starting a conversation – young or old, friend or family, over a cup of coffee or during a car journey on the way to somewhere – it’s time to start talking!

Becoming a dementia friend this week simply means learning more about dementia, putting yourself in the shoes of someone living with the condition and turning your understanding into action.  Start that conversation today and Ask Us Anything!

One of the most common questions that is asked in varying ways is ‘what is the difference between dementia and Alzheimer’s’ disease’.  To put it simply, dementia is not a disease in its own right.  Dementia is the name for a group of symptoms that commonly include problems with memory, thinking, problem solving, language and perception.  Dementia is caused by different diseases that affect the brain.

Some other common types of dementia include vascular dementia and dementia with Lewy bodies.  While there is a relationship between dementia and Alzheimer’s disease, there are key differences between the two.

What is dementia?

When a person receives a dementia diagnosis, they should also learn what type of dementia they have.  This is not always the case, and sometimes the term ‘dementia’ is used to describe the symptoms they may be experiencing. These symptoms might include memory loss or difficulties with language or concentration.

Dementia is caused by diseases which damage the brain by causing a loss of nerve cells.  Alzheimer’s disease is one specific cause of dementia (and the most common).  Some other causes of dementia include:

• Vascular dementia – where a lack of oxygen to the brain causes nerve cells to die. This can be caused by a stroke, a series of mini strokes or a disease of the small blood vessels in the brain.
• Mixed dementia – where someone has more than one type of dementia and a mix of symptoms.
• Dementia with Lewy bodies – where abnormal structures (know as Lewy bodies) form in the brain and cause the death of nerve cells.
• Frontotemporal dementia – where clumps of abnormal protein form in front and to the side parts of the brain and cause the death of nerve cells.

The symptoms that someone with dementia experiences depends on the damaged parts of the brain and the disease causing the dementia.  Dementia is progressive which means it will get worse over time.

What is Alzheimer’s disease?

Alzheimer’s disease is a physical disease that affects the brain.  Abnormal structures called ‘plaques’ and ‘tangles’ build up inside the brain. These disrupt how nerve cells work and communicate with each other, and eventually cause them to die. There is also a shortage of some important chemicals in the brain of someone with Alzheimer’s disease. Reduced levels of these chemicals mean that messages don’t travel around as well as they should.

Alzheimer’s disease is the most common cause of dementia and usually begins gradually with mild memory loss. The person may have difficulty recalling recent events or learning new information. Other symptoms may include difficulties finding the right words, solving problems, making decisions, or perceiving things in three dimensions.

As Alzheimer’s progresses, problems with memory loss, communication, reasoning and orientation become more severe.  The person will need more day-to-day support from those who care for them.

There is currently no cure for Alzheimer’s disease.  However, treatments may temporarily ease some symptoms or slow down their progression in some people.

Can I help a family member or a friend with dementia?

YES!  Whether you are a full-time carer for a someone with dementia or you are part of a larger care-circle, there are lots of different ways you can help a friend or loved-one that has dementia.  Start by having a conversation and don’t forget to Ask Us Anything!

Being a full-time carer can be a rewarding experience, but it can often feel lonely, tiring and as though you are never doing enough.  These feelings are all normal and are felt by most carers at one time or another.  The Alzheimer’s Society has a great resource on their website offering advice, guidance and real-life stories.  They also talk about looking after yourself as well as the person you care for and if you are experiencing feelings of guilt, how to manage those feelings.

Dementia affects people in different ways and research is continuing on how best to support everyone, however it has been recognised that the following does bring comfort (and a smile!) to those with dementia and those supporting them!

• Looking at old photographs of people and places can sometimes jog a memory.
• Listening to music together and if you can remember the words, sing!
• Playing with sensory items such as blankets, beads and certain toys.
• If you have a child or young person in your family, involve them in a conversation with the person who has dementia; the outcome is often unexpected, but joyous!
• Being outdoors whether it’s pottering in the garden or going to a ‘safe place’ such as a local garden centre or park.

MyLiferaft Supporting Dementia

MyLiferaft is a free resource which gives an individual and those who support them one central online place where they can add, manage and share information about health, care and well-being.  Using MyLiferaft reduces the need for repetition and explanation every time someone new comes into the care circle, helps improve consistency and is truly centered around the person and their needs.

• Try our Free Account now to discover the many ways in which MyLiferaft can help support you and those who support you.  If you are caring for someone with dementia you can set up and manage an account for them,  but they can be fully involved and filling in information together can be a great way to get a conversation going.  Add details about yourself that will help others understand you, maybe share a bit about your life, jobs, family, childhood.
• Tell others the best way to interact to reduce your levels of stress
• Let others know how to support you, what you like and don’t like.
• Set some reminders so you worry less about forgetting appointments or taking medication
• Try keeping track of your mood

• Keep a record of what works well for you and what doesn’t.
• Set yourself some goals and track how you are getting on with achieving them.
• Share your goals with others so they can help you reach them.
• Taking medication?  Set a reminder to take it and if you need help taking it, ordering it or picking it up, then let others know.
• Keep a record of meetings and consultations you have with professionals and write down what was discussed so you can refer back to it at any time or share it with others.
• Share information with others e.g. your doctor, family friends.

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those with dementia with links through to organisations such as the Alzheimer’s Society, Dementia UK and Dementia Action.  There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Mental Health, Autism, Epilepsy, Benefit information and various NHS information websites.

Click here to see our full list of Resources.

Epilepsy Awareness Week 2019

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?!

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.

How can MyLiferaft help?

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

• 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.

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

For more information on MyLiferaft and to try a free Standard Account, click here.

• Create a goal related to reducing seizure frequency.
• Share information with your doctor, family friends.
• Add medications including emergency meds.

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those with epilepsy with links through to organisations such as the Young Epilepsy, Epilepsy Society and Epilepsy Research.  There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Dementia, Autism, Mental Health, Alzheimer’s, Benefit information and various NHS information websites.

Click here to see our full list of Resources.

World Mental Health Day

Being mentally healthy doesn’t just mean that you don’t have a mental health problem.  If you’re in good mental health, you can:

• make the most of your potential
• cope with life
• play a full part in your family, workplace, community and among friends.

Some people call mental health ‘emotional health’ or ‘well-being’ and it’s just as important as good physical health.  Mental health is everyone’s business. We all have times when we feel down or stressed or frightened. Most of the time those feelings pass. But sometimes they develop into a more serious problem and that could happen to any one of us.

Self-Care; Looking after YOU

Everyone is different and your mental health doesn’t always stay the same. It can change as circumstances change and as you move through different stages of your life.

There’s a stigma attached to mental health problems. This means that people feel uncomfortable about them and don’t talk about them much. Many people don’t even feel comfortable talking about their feelings. But it’s healthy to know and say how you’re feeling.

Good mental health is not simply the absence of diagnosable mental health problems, although good mental health is likely to help protect against development of many such problems. Good mental health is characterised by a person’s ability to fulfill a number of key functions and activities, including:

• the ability to learn
• the ability to feel, express and manage a range of positive and negative emotions
• the ability to form and maintain good relationships with others
• the ability to cope with and manage change and uncertainty

It’s important to take care of yourself and get the most from life. Below are 10 practical ways to look after your mental health. Making simple changes to how you live doesn’t need to cost a fortune or take up loads of time. Anyone can follow this advice. Why not start today?

• Talk about your feelings
• Keep active
• Eat well
• Drink sensibly
• Keep in touch with friends & family

• Ask for help
• Take a break
• Do something you are good at
• Accept who you are
• Care for others

Every Mind Matters

A brand new initiative has been launched this week from Public Health England and the NHS, in conjunction with several mental health charities, called Every Mind Matters.  It’s aim is to help people take simple steps to look after their mental health, improve their mental well-being and support others.  You can find out more about this initiative here.

MyLiferaft Supporting Mental Health

MyLiferaft is a free resource which gives an individual and those who support them, one central online place where they can add, manage and share information about health, care and well-being. Using MyLiferaft reduces the need for repetition and explanation every time someone new comes on board, helps improve consistency and is truly centered around the person and their needs.

Try our Free Account now to discover the many ways in which MyLiferaft can help support your mental health.

• Add in details that will help others understand you and your world
• Tell others the best way to interact to reduce your levels of stress
• Let others know how to help you if you are feeling stressed
• Try keeping track of your mood
• Keep a record of what works well for you and what doesn’t
• Set yourself some goals and monitor progress

• Share your goals with others who can help you achieve them.
• Taking medication? Keep a track and include if you need support to manage your medication
• In education and need extra support? Document this in the education section and monitor progress
• Keep a record of all meetings with professionals and track what was discussed
• Share information with others e.g. your doctor, family friends, school

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those with mental health with links through to organisations such as the Mental Health Foundation, Every Mind Matters, MIND and the Samaritans.  There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Dementia, Autism, Epilepsy, Alzheimer’s, Benefit information and various NHS information websites.

Click here to see our full list of Resources.

World Autism Awareness Day

World Autism Awareness Day is an internationally recognised day taking place on 2 April every year. In the week surrounding this day, the public are encouraged to take part in World Autism Awareness Week – a full seven days where people across the UK take part in activities to raise money and awareness for the National Autistic Society.

The National Autistic Society

The National Autistic Society are the UK’s largest provider of specialist autism services.  Their trained staff and volunteers bring passion and expertise to the lives of 100,000 autistic people every year.  Their services are specifically directed towards autistic people, parents and carers and professionals.  They work with specialist and mainstream schools, in the community, in the home and at work and have a network of offices across the United Kingdom.

What is Autism

As defined by the National Autistic Society, “Autism is a lifelong developmental disability that affects how people perceive the world and interact with others.  Autistic people see, hear and feel the world differently to other people.  If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be ‘cured’.  Often people feel being autistic is a fundamental aspect of their identity.”

For both children and adults diagnosed with autism, there are common associated conditions, including learning and communication difficulties, behaviour issues and difficulties with social interaction. It’s important to note, however, that autism has different symptoms for different individuals.

Children with autism or Asperger syndrome may find school challenging for a variety of reasons, including difficulties in participating in team work, coping with noise and responding to requests. Scope provide an insightful list of challenges here.

Supporting World Autism Awareness Week

Did you know that:

• £5 could pay for a diagnosed adult to call the NAS helpline for support and advice
• £40 could pay for a parent of an autistic child to have an hour-long telephone consultation with our Education Rights Service
• £200 could fund our Parent to Parent service for a day

You can get involved in a number of different ways to help raise awareness and much needed funding to continue to support the National Autistic Society and Team Autism in their work:

Ride London (Sunday 4^th August) – Ride London is extremely exciting and one of the most popular cycling events around. There is no other closed-road event like it that combines fun and accessible elements that this event does!

Marathons – both full and half marathons across the UK; not for those who don’t own a pair of trainers this year but maybe next!

Trek & Walk – various distances around the UK, up-hill and down dale!

Special Events – held around the country ranging from comedy nights, a gala dinner and a festive carol service

Fundraising – Sign up to receive their fantastic fundraising pack full of great ideas and resources including Anne Hegerty’s fiendishly difficult quiz!

Find out more about supporting the National Autistic Society.

MyLiferaft Supporting Autism

MyLiferaft is a free resource which supports an individual with autism and those who support and care for them.  One central online place to add, manage and share information about health, care and well-being. Using MyLiferaft reduces the need for repetition and explanation every time someone new comes on board, helps improve consistency and is truly centered around the person and their needs.

MyLiferaft can help you in the following areas and many more.

Try our Free Account now to discover the many ways in which MyLiferaft can make your life easier.

MyLiferaft Resources

Click here to see our full list of Resources.

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those with autism with links through to organisations such as the National Autistic Society, Child Autism UK and Autism Independent UK.  There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Dementia, Epilepsy, Mental Health, Benefit information and various NHS information websites.

Lola & Frankie’s Story

Over the course of a month, MyLiferaft 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 5 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 11 years old, which means she started fund raising when she was just 6!

Frankie’s Story

Frankie is 20 and was diagnosed with autism when he was 3 years old.  He attended 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.

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.

Frankie’s update – since we last spoke to Team Lola, Frankie has transitioned and settled in at a house run by the National Autistic Society in Neath. He attends midweek and travels via taxi.  He still enjoys his outdoor activities and is often hiking, swimming, and walking.  He also helps out at the house with various jobs such as cutting the grass and other outdoor tasks!

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!

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

MyLiferaft Supporting Autism

MyLiferaft is a free resource which supports an individual with autism and those who support and care for them.  One central online place to add, manage and share information about health, care and well-being. Using MyLiferaft reduces the need for repetition and explanation every time someone new comes on board, helps improve consistency and is truly centered around the person and their needs.

MyLiferaft can help you in the following areas and many more.

Try our Free Account now to discover the many ways in which MyLiferaft can make your life easier.

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those with autism with links through to organisations such as the National Autistic Society, Child Autism UK and Autism Independent UK.  There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Dementia, Epilepsy, Mental Health, Benefit information and various NHS information websites.

Click here to see our full list of Resources.

Celebrate Purple Day!

Purple Day was founded by Cassidy Megan in 2008 with the aim that she ‘wanted people around the world to come together and teach others about epilepsy’.  Since then, more and more people are talking about epilepsy and finding ways to support those around them that have epilepsy.

Did you know….?

• 50 million people have epilepsy worldwide
• 500,000 people in the UK have epilepsy
• It is estimated that 1 in 100 have epilepsy
• There are over 40 different types of epilepsy
• That 87 people are diagnosed with epilepsy every day

St Valentine is the patron saint of epilepsy and both the Roman Emperor Julius Caesar and the artist Vincent Van Gogh had 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.

MyLiferaft Supporting Epilepsy

MyLiferaft is a free resource which supports you (and those that you care for) in managing their health, care and well-being information.  Using MyLiferaft can help support those with epilepsy and their care-circle with the following features:

• 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, for example reducing seizure frequency
• Share information with your doctor, family friends

We want to help you free up some time to do the things you enjoy, so we are offering a Premium Account FREE for 12 months (normally £120).  Click here and type in the code Purple365 when prompted.

MyLiferaft Resources

At MyLiferaft, we aim to give you everything you need in once place and this includes where to go for advice, information and support.  Our extensive list of resources has a specific section for those with epilepsy with links through to organisations such as the Epilepsy Society, Epilepsy Action and Young Epilepsy.  There is also a full list of resources on a wide range of topics including Bullying, Going Back To School, Bereavement, Dementia, Autism, Mental Health and various NHS information websites.

Click here to see our full list of Resources.

World Book Day!

Whether you are into reading funny books, scary books, magical books, books about facts or books about fiction, World Book Day is all about BOOKS!

MyLiferaft Team Favourite Books!

The MyLiferaft team love a good book (normally with a cup of tea and a chocolate biscuit!) so we asked some of them for their favourite books when they were children:

Clare (Ops Director) read every Elmer The Elephant book and any books that had elephants in them!  In fact, Clare still loves elephants and they feature in every room in her house!

Jane (Project Manager) loved reading the St Clare’s and Mallory Towers books about a group of girls at boarding school and is now reading them with her almost 9-year old daughter!

Getting Children To Read

For some children, getting them to read can be stressful and for parents, it can be difficult to work out if your child is a reluctant reader or struggles to read.  The Oxford Owl is an award-winning website from Oxford University Press, created to support children’s learning both at home and at school.  Click here to make use of their brilliant resource to help and support parents and children.

Our Chief Technical Officer loves visiting the local library with his daughter!  You could turn a visit into an adventurous day out to help encourage your child to read.  Libraries will also have a huge selection of books for all reading types and age groups.  To find out more about your local library, click here.

Additional Resources

If you are unsure of where to start, we’ve put together a few websites to guide you in the right direction.  You may be looking for a book that helps explain a specific disability so your child will understand more about themselves or looking how to introduce some ‘every day’ experiences such as going to the hairdressers or the doctor through reading a book.  There are also story books available where the central character has a disability.

The World Book Day website as loads of fun resources and top tips aimed at all ages!

Bag Books is a UK registered charity supporting people with learning disabilities through the provision of multi-sensory books and storytelling. It is the only charity in the world publishing multi-sensory books for people with severe or profound and multiple learning disabilities.

Little Parachutes are a positive collection of picture books that are either about disability or feature people with disabilities.

We love this list of books for dyslexic and reluctant readers from The Independent .

Scope has published storybooks featuring disabled children.

Nicola Murgatroyd, the founder of MyLiferaft, was a wife and working mother with three children. Her daughter, Faith, had multiple and complex additional needs.  She understands the world of being a parent carer and set about designing a tool to support those who find themselves in a similar position.

In conjunction with author Gail Yardley, Nicola has also been busy with books!  Based on a group of ponies in the Isle of Wight, Nicola and Gail have written several books about Molly, Malt Loaf and their friends!  To find out more about the Happy Ponies, click here.

To find out more about MyLiferaft and how it can help you, those you care for and their care circle, click here.

As Occupational Therapists, do you sometimes find that you don’t have sufficient information about a client, and that time pressures and the environment of an assessment can make it difficult to get a holistic understanding of their situation and wishes?

Created by Nicola Murgatroyd, a mother of a child with long-term complex care needs, MyLiferaft is an online place to store and manage an individual’s health, care and well-being information.  Originally set up to support parents who were caring for children with long-term conditions and special needs, it quickly became clear that MyLiferaft could be used by families and individuals, young & young-at-heart and their wider care-circles.

Our Research

As part of our original design phase, we received over 400 responses to our survey which included the following groups of people:

• Individuals receiving support = 27%
• Family and friends giving support = 60%
• Professionals from within health, social care and the education sector = 12%

Respondents indicated those who supported them in their ‘care circle’ were: family members 57%, GP 57%, consultant/specialist 41%, therapist 26%, social worker 24%, friends 21%.

Three of the questions they responded to are shown below as we tried to understand some of the challenges they faced.

As you can see from above, there are still gaps in the communication among the care teams and a consistency in providing a clear and ‘joined up’ level of care – our data confirmed this was regardless of whether the care team was made up of family, friends and/or professionals

This corroborated for Nicola that her own experiences were not unique – “My personal experiences gave me a first-hand insight into the problems and challenges faced by people who live with a long-term condition. I realised that gaps in sharing information across health and social care still existed several years after my own experiences.”

The complex and often fractured communication pathways added to the level of stress and anxiety experienced by a parent carer who was constantly worried that vital information would be missed.  If those in the care circle are not communicating with each other and the parent, then the child can also suffer unnecessary stress and anxiety.

Supporting the Care Circle

As an OT you need information about the person who has been referred to you, this generally comes by a referral form and or a face to face assessment.  The completion of such forms is a stressful task for parents, they want to be the best advocate they can be for their child, but finding the information can take hours; it can also be painful to have to focus on what their child can’t do. The information in the assessment form can come across as one-dimensional view.

Our research has shown that the importance of collaboration and delivering actions and interventions in a consistent way, is vital to achieve the desired outcomes.  However, this collaboration is one of the most difficult to achieve as instructions get lost, programmes and circumstances change, and new people join the team.  There is a constant need for exchange of information so that interventions can be adjusted in line with changes.  MyLiferaft bridges these gaps in personal care, and supports the sharing of this information.  Everyone gains, the carers and individuals become more engaged and empowered and professionals have a way of understanding their clients and ensuring their plans are accessible to all who support them.

Supporting the Individual

Anna is a parent advisor at the OWL Centre and has two daughters, one with ongoing medical needs – “Throughout Scarlett’s life, the professionals around her have encouraged me to “write everything down” and MyLiferaft allows me to do just that. Using the About Me pages, the journal and the calendar functions, I really appreciate being able to keep everything in one place and to be able to check everything is on track – and all from my phone.  MyLiferaft is able to pull through the information that I have already entered elsewhere in in the system to populate the onerous and lengthy DLA form. It is also proving a great time saver as I prepare to move Scarlett from a statement to an education, health and care plan (EHCP).”

To read more testimonials like Anna’s, click here.

If you would like to find out more about this new generation of health technology and integrated care, please call 03302 231192 or send us a message by email info@myliferaft.com

You can also find out more information on our website.

MyLiferaft works in collaboration with the TSA Voice, UK TeleHealth Care and Barnet & Southgate College driving forward advances in assistive and digital technology.