MyLiferaft Blog

Multiple Sclerosis Awareness Week

Multiple Sclerosis Awareness Week

 

MS Awareness Week (22-28 April) is all about moving; in fact, we want you to Move It For MS!  The Multiple Sclerosis Trust are encouraging everyone to pop on their pumps and introduce a little activity – big or small – into their daily routine.  Staying active doesn’t need to mean running marathons or going to the gym, it’s about doing it at your own level, at your own pace.

Doing it YOUR WAY!

MyLiferaft - MS Week

 

In the past, people with MS were advised to avoid exercise.  It was felt that since many people with MS experienced fatigue and found their symptoms worsened when hot, it was best to avoid activities that could be seen as tiring.

It turns out that this was not good advice and that regular, moderate exercise is now known to be an important part of maintaining good health and wellbeing for people with MS (and those without). There is evidence that it can help with many MS symptoms, and also with general quality of life, including mental well-being

What is Multiple Sclerosis (MS)?

MS stands for multiple sclerosis. It is a neurological condition that affects the nerves in the brain and spinal cord, also known as the central nervous system or CNS.  ‘Sclerosis’ means scarring or hardening of tiny patches of tissue. ‘Multiple’ is added because this happens at more than one place in the brain and/or spinal cord.

  • MS is a disease affecting the central nervous system(the brain and spinal cord)
  • More than 100,000 people in the UK have MS
  • MS is the most common condition of the central nervous system affecting young adults
  • MS is a life-long condition but it is not a terminal illness
  • It is not infectious or contagious so it can’t be passed on through meeting someone with MS
  • Everyone’s MS is different so no two people will have the same range and severity of symptoms, even if they are closely related

Living Day-to-Day with MS

Symptoms can come and go and vary greatly in their impact on someone from day to day, or even from hour to hour.  There is a wide range of possible symptoms but you usually experience only a small number around the time of diagnosis and you may never experience them all. Symptoms vary from person to person and from day to day. This can make your MS rather unpredictable and can take some getting used to.

 

MyLiferaft - MS Week

Some of the most common symptoms around the time of diagnosis are fatigue (a kind of exhaustion which is out of all proportion to the task undertaken), stumbling more than before, unusual feelings in the skin (such as pins and needles or numbness), slowed thinking or problems with eyesight.

Many of these symptoms may be invisible to other people. This may upset you if you’re feeling very unwell but others think you look OK. You may need to explain that your MS is causing difficulties, rather than assuming that others can detect this.

There are treatments for the symptoms of MS although the condition can’t currently be cured.  At the moment there is no cure for MS but there are disease modifying drugs to reduce relapse rates and there is a wide range of possible treatments for symptoms which you can discuss with your health professionals.

Although the effects of MS can vary greatly from person to person, the condition is often categorised into one of three broad types. MS is, at least in part, an autoimmune disease which damages the protein coating of your nerves. The resulting patches of nerve damage (sclerosis) mean that messages don’t get passed along the nerve very efficiently or, sometimes, may not get through at all. Your symptoms will correspond to the areas of your brain and spinal cord that have been damaged.

MyLiferaft Supporting Multiple Sclerosis

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.

MyLiferaft- Supporting Your Care & Well-being Online

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

  • Add a diagnosis and include what having MS means to you
  • 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 multiple sclerosis with links through to organisations such as the MS Trust and the MS Society.  There is also a full list of resources on a wide range of topics including Bullying, Going Back to School, Bereavement, Dementia, Autism, Epilepsy, Mental Health, Benefit information and various NHS information websites.

Click here to see our full list of Resources.

Christina Colmer McHugh & Moodbeam

Our Story

So what do you tell a child that’s pleading with you to say everything will be OK?  Their pink, pinched face etched with tears and eyes welling up at the thought of school on Monday.

That’s what I was faced with one evening in October three years ago, when my seven year old broke down sobbing, while getting ready for bed.  It was such a shock to the system because she was, on the face of it, a happy-go-lucky kid.  Yes,
she was quite shy and yes, she kept herself to herself, but on the whole of it she seemed happy.  So to discover that at the tender age of seven she’d been trying to cope with a tough time at school
was a huge kick in the stomach moment, and then to realise that I hadn’t picked up on it was a double whammy.  The guilt, the disbelief, the awful dread and worry that it brought was monumental.

 

 

MyLiferaft - Moodbeam

Because we are ‘that family that talk about everything’ and ‘a problem shared is a problem halved’ and all that.  We are the sort of parents who ask how the day has gone and think we’re on top of everything that needs knowing about.  But the simple fact was she had to ask for help when it had got too much for her to handle alone.  That was too much.  We were lucky in that she attends a small, friendly rural primary school and we have a close network of friends whose kids all watched out for one another.

So, when the bombshell dropped we met with school and had the usual chats with teachers and the head, who were really supportive in bringing a bullying issue to a halt, and my daughter was so relieved that it was all out in the open. Disaster averted as it were.  I was left with a choice. I carry on and hope it had gone away or I do something to stop this happening again without my knowledge.” But, for me, a busy working mum with a husband away a lot and family across the Irish sea, the worry didn’t leave me. I’d pick the kids up from school and give my eldest a gentle nudge along with “everything OK today?” sang out to disguise the butterflies I was feeling as I walked into the playground. It wasn’t what she wanted to hear though, and pretty soon, she’d dodge the hug and
jam on the car radio to avoid the questioning. So, I was left with a choice. I carry on and hope it had gone away or I do something to stop this happening again without my knowledge.

The Solution

Being a journalist for the past 20 years, I guess I have a certain amount of ability when it comes to researching ‘help for anxious kids’ online. But after drawing a blank when it came to finding some method of allowing children to log how they felt on their own terms, I decided – perhaps rather naively, to set about creating one.  Surely it can’t be that hard I told myself. You’ve got apps these days and online self help groups, lots of help. What could I create that would capture a mood and then show it plotted throughout a
day, so that I could point to it and start a conversation with a loved one on the back of it? This question simply wouldn’t leave me alone.

MyLiferaft - Moodbeam

It was after talking to some close mum friends in the village that I realised I could do with some help on the ‘bringing ideas to fruition’ front. I knew Jonathan through his wife who was a good friend, plus he was a familiar face on family walks and we had children in the same class. It felt a
natural next step when I messaged him to explain I had an idea for something that didn’t exist and would he give it a look over.

The same day I got a message back inviting me over to their house. Great! All very positive but that didn’t stop me feeling a bit of a plum walking up their drive, armed with a A4 print out of ‘my idea’ and not much else!
So I arrived, we sat down and I proceeded to babble on about my experience, my various ideas, my research and what I thought might be a good idea but perhaps, in his opinion, it was utter tosh, waiting for him to say “yes they sell that on Amazon”, but no. He listened, put me at ease and said very plainly, “I think it’s a great idea, great story, I can see you’re passionate about it and have done some digging. But there’s only one way to find out – try and try again. Oh, and you’re asking
someone to design, make a piece of hardware and connect software and make it simple enough for a seven year old to use? It’s not going to be easy”. So I left, armed with email introductions to some very clever people at C4DI in Hull, a spring in my step and the rather crazy notion that it might one day become a reality. “It can’t be that hard surely”, I thought that day.  That day was three years ago now. As the saying goes, ‘ignorance is bliss’. And as to what happened next. I think you all know the answer to that!

Moodbeam

Moodbeam has been created to help the world visualise how we are feeling and to support meaningful conversations. The Moodbeam One device and app are not medical devices and do not not claim to diagnose, treat or monitor specific health disorders. If you are in any way concerned about your mental health we would always recommend speaking to a
healthcare professional. Remember you are not alone.

 

MyLiferaft - Moodbeam

World Autism Awareness Week

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.

 

MyLiferaft - World Autism Day

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.

 

MyLiferaft - National Autistic Society

 

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 4th 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 - Matrix

MyLiferaft Resources

 

MyLiferaft - Caring Support Tool - 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

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.

 

MyLiferaft - Frankie

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!

MyLiferaft - Holly MyLiferaft - Holly

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

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.

Purple Day!

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.

MyLiferaft - Purple Day

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?

 

MyLiferaft - Purple Day

 

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:

MyLiferaft - Matrix

  • 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.

 

MyLiferaft - Strapline

World Book Day

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 - World Book Day 2019

 

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.

 

MyLiferaft - World Book Day 2019

 

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.

 

MyLiferaft - World Book Day 2019

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.

 

MyLiferaft- Supporting Your Care & Well-being Online

MyLiferaft & TheOTHub

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.

MyLiferaft- Research

 

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.

 

MyLiferaft - Inclusion

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.

MyLiferaft

 

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.

Children’s Mental Health Week

 

Children’s Mental Health Week

It is reported that 75% of adults who are experiencing mental health issues started before the age of 18, and that one in ten children will experience a mental health difficulty at least once before the age of 11.  These statistics make it clear that the sooner we can spot the signs in childhood the better.

 

 

MyLiferaft - Child

Healthy: Inside and Out

When you hear the phrase ‘healthy living’, you probably think of being healthy on the ‘outside’ – being active, taking exercise, eating a healthy diet and getting sufficient sleep.  However, we also need to be aware of the health ‘inside’ our body, and that includes our mental health and making sure that we look after our minds.

Luckily, our bodies and minds are closely linked, so things that we do to improve our physical well-being can help our mental well-being.  For example, being outside in the open air, seeing the wildlife around us and breathing in fresh air can help us focus on what we want to do and how to deal with difficult times

What can trigger Mental Health Issues

One thing we know for sure is that everyone is different and because of this, different life experiences can affect people in very different ways.  There are however several common triggers among children and adolescents that can cause mental health issues:

  • Abuse
  • Eating Problems
  • Problems at School
  • Self-harming
  • Sleep Problems
  • Anger
  • Bullying
  • Death and Loss

How to Spot the Signs

We all know that as children grow into adolescents and again into adults, there will always be periods of change emotionally, socially and physically.  In the majority of instances, these changes are to be expected, however it is looking more closely when and if these changes continue for an extended period of time.  Use the acronym MASK to help you:

 

M – MOOD – they get irritable, argumentative or aggressive towards you. They may blame you if things go wrong and can also become withdrawn.

A – ACTIONS – they may experience changes in eating and sleeping patterns. Look out for any signs of bullying, alcohol, drugs or self-harm.

S – SOCIAL – they appear bored, lonely or withdrawn; they start to get into trouble. Losing interest in friends or missing school are common warning signs.

K – KEEP TALKING – Refusing or being reluctant to talk about how they’re feeling is common. Keep listening and ask how they are feeling; make sure they know there’s someone there who really cares.

About Place2Be

Place2Be is a children’s mental health charity providing school-based support and in-depth training programmes to improve the emotional well-being of pupils, families, teachers and school staff.  They currently provide mental health support in 294 primary and secondary schools across England, Scotland and Wales, reaching 142,000 children and young people.

Last year, 232 schools took part in their in-depth ‘Mental Health Champions’ programmes, equipping school leaders, teachers and staff with the skills and confidence to support pupils’ mental health.  To find out more about Place2B, click here.

 

MyLiferaft - CMHW

MyLiferaft Supporting Children’s Mental Health

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:

  • Be a place to store health and care information (and control who sees it)
  • Create a hospital passport (information for hospital staff that isn’t all about illness)
  • Keep track and be reminded of appointments, assessments and medications
  • Share care information with those in the wider care circle for your loved one
  • Join our community and receive newsletters on care and well-being
  • Avoid the constant repetition that comes with passing on information

We want to help you free up some time to do the things you enjoy.  Our Standard service is FREE and you can try it now – just click here.

MyLiferaft- Supporting Your Care & Well-being Online

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 Young Carers with links through to organisations such as Place2Be, Carers UK and Carers Trust.  There is also a full list of resources on a wide range of topics including Bullying, Going Back To School, Bereavement and Mental Health

Click here to see our full list of Resources.

Young Carers Awareness

Young Carers Awareness Day – Thursday 31st January

 

All around us, in everyday life, we see children – in the supermarkets, in the playground, sitting in cars to and from school – but have you ever given a thought about the children you see and if they are a young carer?

 

MyLiferaft - Young Carers

Some children aren’t able to enjoy a ‘normal childhood’ that many children take for granted because they are caring for someone.  A young carer is a child and/or adolescent under 18 who helps to look after someone in their family who is ill, disabled or misuses drugs or alcohol.  They can also help look after a family

What Do Young Carers Do?

Every day there are tasks, chores and activities that as adults we have to do for ourselves, and for our family, that we don’t think twice about.  These are the exact same tasks that a young carer will carry out:

  • Practical tasks, such as cooking, housework and shopping
  • Physical care, such as helping someone out of bed or assisting with home-based physio exercises
  • Emotional support, such as talking to someone who is distressed or comforting a loved one
  • Personal care, such as helping someone dress, use the toilet and have a bath
  • Managing the family budget and collecting prescriptions
  • Helping to give medicine
  • Helping someone communicate if they are non-verbal
  • Looking after brothers and sisters

How are Young Carers Impacted?

With so many adult responsibilities, young carers often miss out on opportunities that other children have to play and learn. Many young carers struggle educationally and are often bullied for being ‘different’. They can become isolated, with no relief from the pressures at home.

  • It can affect a young person’s health, social life, self-esteem and self-confidence
  • Feeling embarrassed about their situation
  • Many young carers struggle to juggle their education and caring which can cause pressure and stress
  • In a survey, 39% said that nobody in their school was aware of their caring role
  • 26% have been bullied at school because of their caring role
  • 1 in 20 miss school because of their caring role
  • Constantly stressed and physically tired by too much responsibility
  • Continually worried about a relative’s health
  • Concerned over their long-term future

Rights for Young Carers

 

The rights of young carer are generally assessed under the Children Act 1989 and the Children and Families Act 2014.

If there is an adult being looked after, then the local council has a duty to consider whether there are any children involved in providing care, and if so, what the impact is on that child.

 

MyLiferaft - Know Your Rights

The local council have a duty to assess ‘on the appearance of need’ (i.e. without a ‘request’ having to be made). They also have a more general duty to ‘take reasonable steps’ to identify young carers in their area.

There are also several benefits and allowances that the young carer may be eligible for, such as a Carers Allowance.  See MyLiferaft Resources on where to get information on this.

MyLiferaft Supporting Young Carers

There is so much involved in caring for a loved one and when we designed the MyLiferaft online application, we knew it was key for both carers and those they care for to have the ability to track their care, health and well-being in a safe, secure manner.

 

MyLiferaft

 

With a MyLiferaft account, you can capture important details about; care, health, social, well-being and education using forms and trackers.  You can share this information with all those within a care circle – other family members, medical personnel, therapists etc – which ensures everyone is kept up-up-to date and support can be provided in a consistent way.  This is all done online and securely which results in less repetition in communicating changes about an individual’s needs.  Knowing others can easily be given the right information, by sharing, to step in to give a helping hand can give a young carer confidence in taking a break or asking for help.  Also, if a young carer is having an assessment the assessor can be given access to help them understand the role that the young carer has.

YOU have the flexibility to choose the MyLiferaft account that works best for YOU and YOUR family. Choose from either the standard account which is free or the  fee based Premium account which gives you unlimited access to Trackers, Reports and Goals as well as the ability to share the information with as many people as you wish.

MyLiferaft Resources

 

MyLiferaft - Help & Support

 

There are many different organisations offering help, support and advice to young carers on all aspects of their lives: help with schooling, applying for benefits, offering someone to talk to and directing them to services in their local area that can offer ‘hands on’ support.  Below are several of the organisations that we have found that can offer all of the above and more.  You can find even more in the Young Carers section in the MyLiferaft Resources on our website.

Carers Trust – Carers Trust believes in a world where the role and contribution of unpaid carers is recognised and they have access to the quality support and services they need to live their own lives.

Carers UK – Making lives better for carers.

NHS – Support and advice from the NHS for Young Carers.

Young Minds – As a young carer you can find helping someone very rewarding, but you also have the right to be looked after. Find out what young carers do, how to spot if it’s getting too much and what to do about it.

Barnardos – All children deserve a childhood.

 

Don’t Feel Blue on Brew Monday

The 3rd Monday in January has historically been named as the most depressing day of the year due to a combination of low sunlight levels, cold weather, post-Christmas bills and the abandonment of New Year’s Resolutions.

In fact, several years ago a (non-scientific) formula was created to explain Blue Monday [W + (D-d)] x T^Q} ÷ [M x N_a], with “W” standing for weather, “D” standing for debt, “d” standing for monthly salary, “M” for motivational levels and “Na” standing for the feeling of a need to take action.

However, never one for a formula, we wanted to support the Samaritans this Blue Monday with their Brew Monday campaign!

What is Brew Monday

Established by the Samaritans in response to Blue Monday, Brew Monday was set up to try and counter the effects that mental health has on people around the country.  By having a ‘brew’, you could help to save someone’s life.  Being able to listen to someone who is feeling depressed is often one of the most effective ways of helping to support them.

 

MyLiferaft-BrewMonday

The Samaritans

Everyday, the Samaritans answer over 1,324 calls from people all around the United Kingdom who need their support.  They offer a safe place for you to talk any time you like, in your own way – about whatever’s getting to you. They know a lot about what can help you through tough times and can help you explore your options, understand your problems better, or just be there to listen.

It doesn’t matter who you are, how you feel, or what has happened. If you feel that things are getting to you, get in touch.

MyLiferaft Supporting Mental Health

Using MyLiferaft enables you to track and record how you feel your mental health is – good days, not-so good days, events that could trigger a low period etc.  You can enter this information into our Trackers and then plot over a period of time how you have been feeling, and use this to set goals to help improve your well-being.  It’s a great motivational tool; feel empowered by incorporating MyLiferaft into your life.

 

MyLiferaft

 

We have created 2 packages to give you the flexibility to choose the MyLiferaft account that works for you and/or your family.  Choose from either our Free account or upgrade to our Premium account which gives you unlimited access to Trackers, Reports and Goals as well as the ability to share the information with as many people as you wish.

 

 

MyLiferaft - Help & Support

Resources

The MyLiferaft Resources has a comprehensive guide to organisations and charities that can support and help someone who has mental health issues.

To contact MyLiferaft to find out more about setting up your account, click here.

To contact the Samaritans, click here.