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.

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.

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 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 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 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?

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.

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.

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

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.

The 3^rd 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.

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.

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.

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.

Staying Healthy & Active in 2019!

There has been much reported over the last 12 months about how the benefits of keeping active can help improve both your health and your emotional and mental well-being.  Whether you are training for a marathon, attending a yoga class or spending a few hours gardening, being active can bring many benefits.

Age is also no limitation to the activities that you can take part in.  Many schools have introduced more physical education classes and after school clubs offering activities and those in their ‘golden years’ are taking up more activities than ever before – often so they can keep up with their grandchildren!

In the past someone with a disability, complex learning need or in need of additional support would not have been able to take part in being active, however over recent years this has changed; the Invictus Games now offers ex-serving military personnel who have been wounded in action the opportunity to complete (watch out for the next Games at the end of October in Sydney!)  The profile of the Paralympics has grown hugely and is now encouraging the next generation of sportsmen and women to pick up a javelin, put on a pair of swimming goggles or lace up a new pair of running shoes!

Why Stay Active?

Cancer Research UK reported that 4 out of 10 cases of cancer could be prevented by a change in lifestyle – that’s 135,000 lives that could be saved.  The charity Mind explains why taking up an activity can help those with mental health issues.  Many charities offering support to those that have a ‘visible’ disability report that individuals become more confident once they take up an activity, which can lead to them taking a greater responsibility for their overall well-being.

However, it’s not just about staying active.  Sometimes it can be about changing several elements of your lifestyle in order to help your physical and mental well-being.  The NHS has a great resource that gives advice and guidance on making changes across the different aspects of your life – eating well, quitting smoking, maintaining a healthy weight and taking exercise are just a few of the different areas.

There is also the social side of taking part in an activity.  We all have days when we feel our energy levels are low and we would rather sit with a good book or the TV remote control, but if a group of people are relying on you as part of an activity, then this motivation can get you out of the door and into a place of positive energy.  Meeting up with people who have a shared interest is often one of the strongest bonds outside of a family unit – it can bring you close to like-minded people who have gone through similar experiences to you and you can share your stories.

How to Stay Active

You don’t have to train for the Special Olympics or take up long-distance running as part of the England Athletics team – although you could if you wanted to!  You also don’t have to wait until January to take part in an activity or change another element of your lifestyle.  Even the smallest of changes now can start to reap rewards in a matter of weeks.

Having a disability, whether it is visible to other people or not, may have stopped you in the past, but please don’t let it stop you in the future.  A member of the MyLiferaft team was invited to attend the National Junior Games at Stoke Mandeville Stadium a few weeks ago with Wheelpower and was amazed at the different activities that are now available and the positive almost electrical atmosphere.  See their website for more information.

Staying Active also doesn’t have to mean you build up a sweat!  Walking and gardening have both been recognised as having great benefits to both your physical and mental well-being, and being outside is an added bonus – even with our Autumn weather approaching!  There is no sport that isn’t available to people with a disability; Some of the lower impact sports you might consider include yoga, pilates, swimming, aqua aerobics & bowls.

To pick up the pace, dancing, cycling, athletics and court-based activities are just a few of the ‘higher intensity’ activities that you can take part in and being in a wheelchair doesn’t mean you have to sit on the side lines as a spectator.  The British Wheelchair Athletic Association (BWAA) has the pentathlon as a discipline which involves completing 5 different sports and Wheelpower will put you in touch with organisations that can have you using your wheels for table-tennis, basketball, bowls, curling & rugby!  Fencing, tennis, ice-hockey, rowing, gymnastics, cricket, canoeing, archery and angling are also available so finding an activity to suit you is easier than you think!

MyLiferaft supporting Sports, Activities & Well-Being

As well as using MyLiferaft to keep a record of medical appointments, treatments and medications, you can also use it to help motivate you to stay active and healthy!

• Use our Goals to help you set sporting or physical achievements or if you are trying to lose weight, use the Goals to set up a weight loss target
• You can track your progress using our Trackers which can be personalised to match your Goals
• The Calendar allows you to set up a training schedule if you are taking part in an event
• Create a food diary in our Journal so you can monitor what you are eating and how often
• You can Share all of this information with family, friends and professionals within your care circle, so when you achieve your goals, you can tell everyone!

We have created 2 packages to give you the flexibility to choose the MyLiferaft account that works for you and you family.  Choose from either our FREE Standard 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.

To try MyLiferaft now, click here.

To find out more about MyLiferaft, click here.

For more information, see our Subscriptions page.

Resources

There are now so many different organisations offering sporting opportunities and activities that it is difficult to get all the information in one place!  Below are several of the organisations that we have found that specialise in offering activities to the disabled and those with additional needs.  You can find even more in the Sports & Activity section in the MyLiferaft Resources on our website.

Challenged Athletes Foundation

Sport England 

England Athletics

British Wheelchair Athletic Association

Mencap Sport

A Jolly Holly Christmas!

Christmas should be a time of good cheer, festive family get together’s, the giving and receiving of thoughtful gifts and delicious food, however we are all realistic enough to know that this is not always the case!

As the big Ho Ho Ho gets nearer, the pressure can start to mount:

• Have you remembered to write all the Christmas cards?
• What about a present for the baby-sitter, dog walker, awkward colleague?!
• Do you have enough wrapping paper and Sellotape; where did you last spot the scissors?!
• If you are hosting Christmas Lunch, do you have any vegetarians to cater for?
• Where are the spare bulbs for the fairy lights?!

Sometimes even the experts need a little help staying holly and jolly, so we’ve put together a few Top Tips to try and stop the stress before it gets too much

Write a To Do List – this doesn’t work for everyone, but if you are a ‘List Person’, take the time to write your list, add to it as you think of new things and then feel a sense of achievement when you tick something off

Take a break from the family – it is absolutely OK to take a ‘time out’ from your family and spend a few minutes by yourself.  Whether it is your immediate family or a distance relative, there are going to be points during the festive period when leaving the room is most definitely going to be good for your well-being!

Spend time ‘unplugged’ – lots of presents are going to be electronic, battery operated, make noises and if all of your family are using them at the same time, they could drive you all to distraction and you spend precious time not truly being together.  Allocate some ‘turn off’ time and go for a walk, play a game or crash out round a Christmas movie with a selection box – just make sure you do something together!

Make time for exercise – for many, the festive season is a time of excessive eating and drinking and even the strictest of exercisers may take some time off!  This is OK, but remember that even going for a walk with your family counts as exercise as well as spending time together!  Exercising will lift your mood, make you feel better and burn off a few turkey calories!

Avoid excessive alcohol – most de-stressing articles will tell you to avoid alcohol altogether, but let’s be realistic, it is Christmas and the odd over-indulgence is going to happen!  Try not to do over do the alcohol as it can hinder sleep, dehydrate you and make you more prone to stressful situations.  If you do partake, drink water steadily throughout the day as this will go some way to helping the situation.

Know when to stop – perfection is over-rated!  The Christmas holiday is about everyone and that includes you!  There will always be some last-minute hiccups on Christmas Eve and someone is bound to want something you don’t have for Christmas lunch, but take a deep breath and remember to enjoy yourself!

School Holidays

There is always that difficult few days between school breaking up and Father Christmas’s arrival where it can be difficult to keep your children entertained.  Don’t despair as MyLiferaft can help!  We’ve put together a list of activities for all ages and abilities that will keep you and children happy!

• Make a Christmas wreath – you may be able to use a few bits from the garden or collect twigs, cones and foliage on a walk
• If you are into baking, then baking some Christmas biscuits and then letting the children go mad decorating them is brilliant, albeit a little messy, but at least you have a treat for afternoon tea!
• Snuggle up with your favourite Christmas movie – and don’t forget the snacks!
• If you love crafts, then making Christmas bunting to hang round the house and in the children’s bedrooms could while away a few hours!
• Make some paper snow-flakes to put on the windows

To see more ideas and suggestions for school holiday activities, see our Resources.  We would love to hear from you at info@myliferaft.com if you have a festive activity that you would like to share with the rest of the MyLiferaft community!

And Finally…!

Have fun!  Christmas is a time for family, friends, laughter and love, too much food and raiding the chocolates and mince pies!  If you recognise some of the things from our list above in advance, you will hopefully be prepared for them and manage to keep hold of your ‘ho ho ho’!  If things don’t go to plan, try not to worry about them – you could actually be making a fun memory you can talk about in years to come: “Remember that time that Mum set fire to the sprouts!

Lots of love & festive wishes from Nicola and the MyLiferaft team.

MyLiferaft supports your care and well-being online.  To find out how we could help you and those that you care for or that care for you, see www.myliferaft.com

Caring For Your Future

Did you know:

• 6,000 people become carers every day?
• Between 6-7 million people in the UK are carers for a loved one?
• There are approximately 700,000 young carers in the UK (Jan 2017)

Every year Carers UK hold a Carers Rights Day (30^th November) and this year, MyLiferaft wants to celebrate that day to highlight this amazing group of individuals.

Carers Rights Day brings organisations across the UK together to help carers in their local community know their rights and find out how to get the help and support they are entitled to.  It raises awareness of the amazing work that unpaid carers carry out selflessly across the UK every day.

Who can be a Carer?

A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction and would not be able to cope without their support.  Anyone can be a carer – a 12-year-old girl looking after a parent with an addiction problem, a 40-year-old man caring for his partner who has terminal cancer, or a 75-year-old man looking after his wife who has dementia.

For many people, taking on the role of a carer is a rewarding and positive experience, however there are several aspects of the role where you may need help, support and/or advice:

• Money, benefits and entitlements – there can be a financial cost linked to looking after someone. Many carers have to give up work or reduce their hours putting them under financial pressure.  The cost of equipment and aids, washing, heating, lighting and travel can all add to the financial burden. Carers UK have a ‘Help with Benefits’ section on their website that can help you find out what you are entitled to claim for.
• Looking after yourself – caring can be emotionally and physically exhausting which can lead to depression, stress and other mental health issues. Please see our Resources section for a list of organisations that can help you.
• Getting out and about – caring for someone can be very isolating and you may find it difficult to leave the house. Try to find a local carers support group as they understand what you are going through and will often have regular support meetings with other carers.
• Working and learning – young carers can find it difficult to attend school and when they are there, will often be bullied. For those who have paid work outside of caring for a loved one, it may mean that career progression or promotion will need to be put aside.

What am I entitled to?

Carers Allowance is the most common benefit, however not every carer can apply for it so check your eligibility.  You may be eligible for Carer’s Allowance if you meet all the following conditions:

• you look after someone who gets a qualifying disability benefit
• you look after that person for at least 35 hours a week
• you are aged 16 or over
• you are not in full-time education
• you don’t earn over £120 a week (after deductions)
• you satisfy UK presence and residence conditions

The Carers UK website has all the information you need to check if you are eligible.

Please note that there are sometimes different allowances and benefits applied for carers in Scotland.

What Can MyLiferaft Do?

MyLiferaft is a free resource which supports you (and those that you care for) in managing health and care information.  Using MyLiferaft can:

• Be a place to store health and care information (and control who sees it)
• Create your hospital passport (information for hospital staff that isn’t all about illness)
• Keep track and be reminded of appointments, assessments
• Share care information with those who support you
• Hear about new technology solutions and how they can help you

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

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 carers with links through to organisations such as Carers UK and Carers Trust, however there are also sections covering other topics such as bereavement, Alzheimer’s, dementia, NHS resources, bullying and school holiday activity suggestions for children with a disability.

Click here to see our full list of Resources.

Carers UK operate a members’ only forum that gives carers the ability to share information, support each other and have access to an online community that understands what you do. To find out more, click here.