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The antidote to the feeling of losing control

15 Jan 2019

One of the first things to disappear when you become the parent of a child with complex needs is a sense of control. Where once you felt the master of your own destiny (foolishly or not) the world and your week become shaped and determined by other people and their growing list of tasks.

It’s the beginning of the New Year.

2019 is unravelling before our eyes.

A shiny, new calendar is hanging on the wall.

The empty diary pages expectant ready to be filled.

Only kidding

The diary has been filled for months with appointments and therapies, tasks and responsibilities.

When I train professionals and lead workshops with parents, I talk about the initial experience of becoming the parent of a child with disabilities.  To me it feels as though we fall headfirst into a Vulnerability Labyrinth and is probably the same for any person who has heard the carefully crafted words of someone breaking bad news.

In the beginning, there is a diagnosis, trauma or significant event. We experience a defining moment that splits our life into before and after; changing our hopes, dreams and expectations for the future.

Then often, we sit in the centre of the storm as people buzz around. Sometimes it feels as though life goes in slow motion. Everything around us happens relentlessly as every minute ticks by with the slow monotonous pace of a midnight clock.

All we have is the present

The past seems so insignificant and the future unknown. The people surrounding us start using language and constructs that we don’t understand causing us to stumble into a rabbit warren of disability jargon and medical liturgy. The rope of life we have been diligently climbing shoots through our gripped hands, no matter how hard we try to hold on. Instead we slide to the ground deflated and tired, leaving our fingers red and raw.

Very soon, that age old saying becomes true; the tail begins to wag the dog.

The complexities of disability morph and grow, out sprinting the simplicity and ordinariness of family life.

Then sitting at our computer, in the wee small hours of the night, you find yourself scrabbling for information –  for control. Google becomes a best friend and arch enemy. One minute a lifeline of hope is flung your way, quickly followed by a stark truth you are ill prepared to read in black and white.

Compounding this sense of confusion is the lingo, language, secret policies and protocols that frame the world of disability.

“Such and such can’t happen until you’ve seen this person.”

“You can’t have this help until you’ve got this diagnosis.”

“Yes, you need to see this therapist, but that professional has to refer you and they have a three-month waiting list.”

As a parent, as a person just trying to determine their own destiny, sometimes all I want is to simply be a person that contributes to the decision.  I don’t necessarily want the weight of responsibility to lay entirely on my shoulders, but I want to be part of the decision-making process.

But there is hope.

There is something that can help dispel this vulnerability labyrinth.

There is a magic wand.

Effective communication

Effective communication between parents and professionals is paramount to empowering and enabling parents to engage in their lives and in the lives of their children. It is the first ingredient for partnership and co-production. There is a natural gap between parents and professionals. Both are experts in their own right. Both have skills and knowledge necessary for best care to be provided. But the gap between them needs to be bridged with effective communication.

Sometimes information will be hard to hear.

Sometimes hard conversations need to happen.

But the way a professional builds trust, supports and listens will directly impact the feelings a person, parent or relative has when they leave a conversation. I might not like what is being said, but if I feel heard, if I trust the person speaking to me, if I know they have me and my child’s best interests at heart, then the sting of hard news is easier to bear.

After all is said and done, I don’t want to be left sitting in my vulnerability labyrinth scrabbling for control. Rather, with effective communication, I can feel like an essential part of the team of professionals trying to get the best for the person I love.

For training in effective communication between parents and professionals check out the Goldsmith Centre and Born at the Right Time. In a time of austerity and uncertainty we need to ensure the way we communicate improves each other’s lives and the lives of the children we love and serve.

 

Written by Rachel Wright for Simple Stuff Works.

Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include conferences, leading workshops with parents as well as training professionals.

 

 

Our equipment doesn’t work

27 Nov 2018

It isn’t news to us, we have always suspected it, but no matter how innovative, dynamic, pioneering or ground breaking a piece of equipment, it only works as well as the people using it. Here at Simple Stuff Works we know that it isn’t simply pieces of equipment that change the lives of those with complex needs, it is the people who support them.

Without the right training, those who care for people with complex needs cannot adequately support. Unless people know how or why to use equipment it will sit and gather dust on a shelf wasting essential resourcing or being used inappropriately, failing the people it is created to help. Whether it is a professional in education, social care or healthcare, or the important relatives and carers who care twenty-four-hours a day; each person surrounding those with complex needs need training. They need to be inspired, informed and equipped to make the lives of those with complex needs as good as they deserve.

That is why we have been sitting on one of our biggest secrets to date…

 

With Changing Places facility, high-tech Audio/Visual equipment, prominent educators in their field and some really good coffee, The Goldsmith Centre creates the perfect environment to bring together people with complex needs and those who aspire to remove some of the challenges they face. Based in Tamworth, in the Midlands, we hope The Goldsmith Centre is well placed to see people from around the country gather to make a difference.

Simply the Best

The Goldsmith Centre has been a dream of ours for years. Following in our parents footsteps, John and Liz Goldsmith, we are carrying on their legacy of wanting to positively impact the lives of those with complex needs. Our passion for changing lives is founded on the knowledge it is people who make a difference. We want to create an environment where bespoke, specialist, cutting-edge training is happening to support those with complex needs because we believe they deserve only the best.

Our speciality is postural care and we strongly believe that good postural care is the gateway to a fulfilled and pain free life. The Simple Stuff Works equipment still does positively change the lives of those with complex needs – with the help of well trained people. With good postural care people sleep well through the night and sit or move well through the day. A child can only concentrate at school after a good night’s sleep. The right kind of seating is essential for the woman who needs to sit straight in her chair to safely access her computer and fulfilling her job. While the elderly gentleman, like everyone else, needs twenty-four-hour postural care to enable him to fulfil his passion for painting because the simple act of lifting his head can need creative and thoughtful support.

It isn’t just about posture.

We know that imaginative and creative care planning, effective communication between professionals and carers, enhancing the sensory world for sensory beings and even the power of healing in laughter are just a few of the things which make up the tapestry of  living a life as vibrant as the complexities people face.

And that is for starters…

For us at Simple Stuff Works, it is the ordinary parts of life that give us fulfilment and meaning. We believe that is the same for everyone else too; dinner with loved ones, making memories as a family and being creative in whatever purpose we feel gifted to fulfil.

We want to facilitate the wonderful ordinary of life in the lives of everyone, independent of their level of need. It is a simple dream with often simple solutions. It is dream dependent on the right cocktail of well supported carers and innovative equipment (like our supportive and humane sleep systems) being sustained by dynamic and inspiring practitioners with a wealth of excellent training.

So, if you are an exceptional trainer or educator focused on making a difference to the lives of people with complex needs, we would love to hear from you and commission training at The Goldsmith Centre.

If you are a practitioner working in education, health or social care, check out our list of courses on The Goldsmith Centre website or go to Eventbrite and book yourself a course which will improve your practice and magnify the impact you have on people’s lives.

If you are someone with complex needs, or a person who supports them, check our courses or postural care assessments and come to The Goldsmith Centre knowing that throughout its development, it is you we have been trying to serve every step along the way.

How a tweet can end with a flight to Gaza

19 Sep 2018

Ornately draped curtains hung around the room blocking out the midday sun. Sioned stood teaching. It was all so familiar; a room full of delegates, PowerPoint presentation, projector and screen. The humid room though, was a tell-tale sign that behind the green curtains lay the bustling hubbub of Gaza rather than the green fields of North Wales

From Chester to Gaza

Usually on a Wednesday morning Sioned Davies would be working as a paediatric physiotherapist in the Countess of Chester hospital seeing a range of children with neurological disabilities. Then one impulsive tweet and series of emails later she found herself using annual leave to jump on a plane to Gaza rather than a sunny beach in Spain. Alongside Colin, a Paediatric Physiotherapist from Addenbrookes Hospital in Cambridge, Sioned flew with the charity Medical Aid for Palestinians (MAP) to shadow practitioners at work and provide a three-day training course for paediatric physiotherapists focusing on spasticity and postural care management.

The Goldsmith Indices

Readied with a The Goldsmith Indices measuring equipment and wealth of knowledge, the three-day course was crammed full of evidence based practice which the therapists could use directly in their public and privately funded clinics. When asked what incident will stick with her from the trip, Sioned told of a four-year-old girl she meet in ITU who had been on a ventilator for ten months. Despite high tech, specialised care keeping the preschooler alive, it was obvious to Sioned that the lack of postural care was contributing to her hips slowly dislocating whilst in hospital.

It was a stark indicator of some of the dramatic differences with practice in Gaza and the UK. Although therapists undergo a comprehensive four-year training course to qualify as a physio, post graduate training is minimal. With very little structure and accountability, specialties within practice rarely develop and there is little drive for continuing professional development or evidence based practice. Add to this the lack of specialist equipment and antispasmodic medications, and what results is predominantly poor postural care management.

Standardised care

Back at home in the specialist school she works, Sioned has seen positive change in the prevention of deformities and maximizing function in the children she cares for. Through staff training, postural care has become an integral part of the school day. The improvements in children’s posture has then been proven using the Goldsmith Indices as an annual outcome measurement. Where previously they had depended on unreliable x-rays and photographic pictures to monitor postural changes, the Goldsmith Index has allowed care to be standardised, providing reliable measurements of postural alignment.

 

In Gaza, therapists were so grateful for the knowledge Sioned and Colin shared. Quickly they could see how postural management not only impacted function and movement for mobile children but also when thinking about chest physio and the respiratory system. Every aspect of a person’s quality of life can be impacted positively by good postural care management. With the intensive training provided, therapists were inspired to take a leading role in postural assessments. Encouraging them to acknowledge small postural changes which have the potential to prevent deformities. It is a big mind shift for practitioners and families who are used to ‘treating’ patients for a short episode of care before allowing child to return to ‘normal life’.

Painful and life-limiting contractors accepted as inevitable

Before the training by MAP, therapists accepted painful and life-limiting deformities as an inevitable consequence for those with neurological disabilities or limited movement. A reality witnessed by Sioned who noticed a higher prevalence of excruciating and limiting contractures compared to the UK. One young six-year-old, who participated in the case study aspect of the training, had to be lifted everywhere by his family. With incredibly high tone, no wheelchair, no walker, no splints, no baclofen, his quality of life was dramatically reduced. Sioned reflected,

“We take it for granted. Baclofen, splints and the equipment we have available. The impact on the family was incredible, having to carry their 6-year-old every single day.”

The frustration of not being able to provide highly specialised equipment and medications was eased when it came to night-time postural care. Having never seen any kind of sleep system before, the therapists finished their course inspired and equipped with the necessary principles of care needed to help families. Using locally sourced or improvised equipment, therapists can now provide the essential nighttime support children need to help prevent body shaped distortion in a gentle and humane way. It is an achievable goal with the life-changing potential to reduce pain, maximise function and improve quality of life

What next?

Now back home, Sioned is already dreaming of her next trip to Gaza. It is hoped with the necessary funding, MAP will be able to broaden the work they have started. Together they dream of further equipping therapists with the knowledge, skills and equipment. In particular, they hope to begin to engage families in their vital role in providing 24-hour postural care. For Sioned it is a seemingly small but very strong step forward in a long and worthwhile journey in improving the lives of children two and a half thousand miles from her rural home in Wales.

Simple Stuff Works 10th Birthday

10 Jul 2018

2008 was epic

Usain Bolt broke the 100m world record at the Beijing Olympics, the world banking markets crashed and Barak Obama was elected President of the United States of America. It was a pivotal year in global history not least because Simple Stuff Works was born.

Ten years ago, in a town not far away, a family passionate about postural care resolved to work together to positively change the lives of people around the world. Focusing on humane and comfortable products, training and person-centred care, Simple Stuff Works Associates brought together decades of knowledge, experience and resources to take a stand against unnecessary destructive changes in body shape.

Simple Stuff Works 10th Birthday 

This summer, Simple Stuff Works celebrated its 10th Birthday in the same way it tackles everything else, with its family values at its core. Simple Stuff Works is proud to be a family business focused on improving the lives of families whose loved ones have limited movement. Family life is important to us and we know it is important to the people we support. It may be an aged loved one whose final years should be comfortable and rewarding, or protecting the body shape of an infant too young to know what the future might hold, or even a teenager with physical disabilities who, like everyone else, wants to make the most of their life. Each person is surrounded by families and carers who want the best for them, and so do we.

“Simple Stuff Works dreams of a worldwide end to body shape distortion through accredited training and comfortable, gentle products.”

Our birthday celebrations were met by the perfect summer afternoon. The sun was shining, the bunting hung and an ambitious water slide erected in the family garden. The scene was set for a fitting celebration.

The Simple Stuff Works ‘Goldsmith Grandparents’ hosted the day

Grandpa Goldsmith John Goldsmith is a passionate and hard-working man who has dedicated his life to creating incredible solutions to support individuals with complex healthcare needs. John is an animated man whose brain is always working towards the next new, inventive piece of equipment that might improve people’s lives.

Granny GoldsmithLiz Goldsmith has been a physiotherapist for 50 years, graduating in 1968. Her dedication to the people she supports has seen her develop the world’s first tool to measure body shape and body symmetry. She is determined to raise standards and ensure future generations don’t have to suffer the consequences of body shape distortion.

Fueled by both their parents’ passion and own personal experience of disability, Anna Waugh MD (left) and Sarah Clayton CEO (right) set up Simple Stuff Works Associates to continue to spread the word about body shape distortion. They wanted to create simple, affordable postural care solutions whilst inspiring families and healthcare professionals that they have the power to make a difference.

Simple Stuff Works Associates is a family run business and we wouldn’t be anywhere without the support of our wonderful family including our sisters Polly and Julie.

Polly’s husband, Russ, was a member of our team for a number of years before his death in 2016. Part of our passion for the work we do is to ensure that his hard work and legacy is never forgotten.

From our family to yours, thank you for being part of our journey.

Here’s to you, Simple Stuff Works Associates and the next 10 years.

Joanna Grace, a bottle of gin and sweaty bodies.

04 Jul 2018

Gin

With a boutique bottle of gin tucked on to the passenger seat, I frantically drove around in circles, rapidly losing my cool. I was going to spend the day with a Simple Stuff Works hero, Joanna Grace, and had been so determined to arrive in plenty of time. Firstly, the Satnav conspired to thwart my punctuality aspirations by sending me to the wrong place. Then a complete lack of parking spaces in central Cambridge put the final nail in my timekeeping coffin.

So, when I eventually burst into a room brimming with people at Wesley Methodist Church, I was hot under the collar and flustered. Thankfully, a very kind person with rosy cheeks strode across the room a few minutes after me – there is nothing that balms a sense of tardiness more than someone else turning up even later.

Joanna Grace

At the front, Jo stood bare foot and animated, introducing the day. A large, ornate, leaded window illuminated the room jam packed with bright colours, textures and quite a few sweaty bodies; it was a sensory explosion. Dressed in her iconic style, reminiscent of Dorothy skipping through Oz, Jo talked with enthusiasm and clarity introducing us to the three steps of sensory experiences;

  • You are an entity in this world
  • I can declare my presence
  • I am an I, separate from the world.

Before the day really got started, we were all encouraged to share the sensory object we had been primed to bring along. It needed to be something which described us in some way but also kindled more than one sense.

Around my table, offerings included foliage hastily plucked from a garden on route, a wonderfully enticing dry bubble and a very personal memory box with sound and smell, given by a child. I lowered the tone considerably by offering my exotic gin bottle with its bright colours, popping cork and scented interior. I suspect it said more about me than I had intended it to.

Sensory Lexiconary

Throughout the Sensory Lexiconary training day, Joanna goes through each sense, looking at their development, quirks, examples, practical considerations and an experiment to try together. I hadn’t intended on taking notes but immediately Joanna started talking, I wanted to remember what I was hearing so flipped open my laptop and began to type. By the end of the day, my notes were being hastily tapped on to my phone as my laptop’s battery had given up the ghost after several pages of information and insights.

When I asked later what lexiconary meant, Jo explained, “A Lexicon is the vocabulary for a branch of knowledge, a group of people or a subject, so the Lexiconary session is a romp through a lexicon. The day covers the sensory vocabulary of seven senses.” It certainly felt like a romp (rough, energetic play) or the maybe even a sprint.

Inclusion: for pity’s sake?

Before my day in Cambridge, I had already been hooked by Jo’s engaging and tender style of communication through watching her much loved and challenging TEDx talk, Inclusion: for pity’s sake? with Chloe Salfield. If you haven’t already seen it – watch it now.

Jo’s enthusiasm and passion for engagement with Sensory Beings didn’t falter throughout the day. She led by example and clearly was only skimming the surface of her extensive knowledge and practical experience. Although I had an inkling before the sensory lexiconary training, by the end, it was clear to me why Simple Stuff Works had identified Joanna Grace as one of their heroes.

But for me, the most inspiring thing about Joanna is the holistic and encompassing approach to her work. You might be tempted by her appearance to be duped into thinking she is an artistic, creative, attractive woman who likes making people happy with lots of touchy feely objects. But that is simply the tip of the iceberg. Jo is a hardworking, dynamic and dedicated professional focused on the pursuit of challenging us as a society to improve the lives of those with Profound and Multiple Learning Difficulties through respect, communication and inclusion.

Pioneer

This is clearly demonstrated through her pioneering work launching the National Conference for Profound and Multiple Learning Difficulties with their Essential and Core Service Standards for people with Profound and Multiple Learning Difficulties (PMLD).

One of my favourite Jo Grace quotes remains;

“A person’s ability to communicate is not dependent on their being able to master certain skills, it is dependent on our ability to listen and communicate responsively”

As the parent of someone with PMLD, I would recommend everyone who cares for, educates or loves someone with PMLD to attend the Sensory Lexiconary. You could also stalk Jo and her wealth of knowledge at the Parallel games in London or the second PMLD national conference.

It is time for us all to step up and take a lead from people like Jo who have used their insights and skills to develop tangible guidelines which help us give people with PMLD the wonderful quality of life they deserve.

Joanna Grace is Sensory Engagement and Inclusion specialist, Parallel London Ambassador, author, trainer, TEDx speakerand founder of The Sensory Projectsand hero of Simple Stuff Works. She can be found on Twitter, Facebook, Linkedin and Sensory Projects website.

Written by Rachel Wright (Born at the Right Time) on behalf of Simple Stuff Works.

Simple Stuff Works Heroes – Helen Laverty

04 Apr 2018

Simple Stuff Works has the privilege of working alongside a number of remarkable people who change this world for the better. In 2018, we are going to celebrating some of these people through our ‘Heroes’ blog series.

First up is…Helen Laverty

By day, Helen is a senior lecturer in Learning Disabilities at Nottingham University. By night she quietly changes the world by bringing people together through Positive Choices.

In a recent interview with Helen I asked, ‘What is Positive Choices?’

“Positive Choices started as a consequence of some of my nursing students being told at an RCN forum that there was no future in Learning Disability nursing.”

The ensuing conversation between Helen and her students catalysed the idea for a one off event where like-minded nursing students, professionals and families could get together to

Celebrate Learning Disability Nursing as a Positive Choice.

Helen and three others met in a motorway service station outside Wexham and dreamt up an event where Learning Disability Nurses were the majority not the minority. They developed a conference where nursing students from 5 nations (UK and Ireland) were inspired by hearing from leaders in their field and those living with learning disabilities that what they do is important and makes a difference.

Positive Choices is as much a festival than a conference.

The first conference took place in Nottingham in 2005 with the tagline #Togetherwearebetter. This year hundreds will gather in Dublin for the biggest and brightest conference to date. But it isn’t all about the speakers and learning, rather it is a huge celebration of how those with learning disabilities contribute to a brighter and better society. The festivities of Positive Choice 2018 will be kicking off with MiXit, the inclusive theatre company, and 16-year-old DJ Jay creating a party atmosphere with his inclusive and Makaton friendly disco.

One of the biggest highlights of this Positive Choice 2018 are the Shiners.

Shiners are graduates of an amazing organisation, Cornwall Accessible Activities Program. As well as enabling holidays for those with learning disabilities and their families, CAAP have also set up an access to work project called ‘Time to Shine’.

On 14th April, Helen and Sally Phillips will be conducting the first graduation ceremony for Shiners. “With passion and enthusiasm, the Shiners wanted to contribute to the Positive Choices conference but with budgets tight”, Helen confessed, “we weren’t sure how we could fund it.”

That’s when the local community stepped in.

Through fundraising events and support from hundreds of people, £10,000 has been raised to send 15 Shiners to the Positive Choices conference in Dublin next month.

Alongside 500 student nurses and 150 registered nurses, 15 Shiner ambassadors will be supporting the conference in a wide variety of ways. From being ‘meeters and greeters’, to working on the registration desk, promoting merchandise or fuelling people with much needed coffee. These 15 ambassadors represent the heartbeat of Positive Choices and the need for heroes and champions to live without fear.

Heroes and champions deserve to live a life without fear

Helen states that currently there is a constant fight for existence. Both for those living with learning disabilities and those supporting them, each are having to take a stand and combat prejudice.

Speaking to Helen it is hard not be infected by her passion for supporting those with learning disabilities and those training to make a difference in their lives. When I asked what Learning disability nurses do, she responded,

“Learning disability nurses are there for the good and not so good. We engage in all aspects of life and are the scaffold which hold other professionals together. Our skills lie in creative, non-traditional and sustainable solutions.”

When I asked what this looks like in reality, Helen described a recent incident where she supported a well-known parent of a child with Down Syndrome. The medical team were discussing the possibility of a general anaesthetic to obtain a blood test. Through support, Helen was able to advise the family in strategies to help make the blood testing process successful. What seemed like small, simple steps made a big difference to the life of one young girl and her family.

“Ask for us or we will disappear.”

With increasing cuts in services and provision, Helen is adamant that those families who would benefit from contact with a learning disability nurse, needs to ask for one.  Either by asking a GP for a referral or accessing the learning disability liaison nurse in an acute setting. Helen asserts, ‘It is relatively easy to gain the benefit and wisdom of a learning disability nurse in your area. What is really important is that you ask for us. Because if you don’t, we will disappear.’

You find out more information on Helen’s work through this YouTube clip, the Positive Choices website or this YouTube clip about ‘Tea at Grandma’s’, a new venture for Positive Choices, in partnership with Cornish Down Syndrome association.

“We’ve been to as many Positive Choices events as we could – they are an opportunity to reconnect with what is important and to meet others as passionate and committed to improving people’s lives as we are here at Simple Stuff Works. It was at a Positive Choices event that we organised our sponsorship of the amazing inclusive performing arts group Mixit, something we are really proud to do. We sponsored the ‘Strictly no Labels’ event providing trophies and encouragement for those taking part. We are a little bit in love with Helen so any opportunity to spend time with her and her amazing students is one that we jump at!” Sarah Clayton, CEO Simple Stuff Works

Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Timeand published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.

6 ways Simple Stuff Works puts families first

12 Mar 2018

Have we mentioned that families are really important to us at Simple Stuff Works? 

As a family business, we value putting the people we love at the centre of our lives and we know that our customers do too. But Simple Stuff Works isn’t a company that simply talks the talk, we walk the walk.

6 ways Simple Stuff Works put families.

#1 We collaborate with parents

As well as getting feedback from families who use our equipment, we work closely with Rachel from Born at the Right Time. With Rachel’s help we make sure our practice and marketing communicate the value of putting families first.

Our collaborative production of animations demonstrate that we know postural care is a small drop in the ocean of family life. Caring for someone with complex needs is a 24/7 job and we want to work with those who are caring for their loved ones day and night.

#2 We tell family’s stories

There is nothing that gets the Simple Stuff Works office in a flutter more than feedback from families who tell us how our equipment has changed their life for the better. We have so many stories that keep us going; inspiring us to do what we do. You can read about Charlie, Jack and John by following the links.

Transforming people’s lives is the heartbeat of our work

#3 We endorse the Don’t call me Mum initiative

One simple way we can show parents that we want to work in partnership, is to use their name in conversation, not a default ‘Mum’ or ‘Dad’. Such a simple step can make a big difference to developing effective communication. We agree with the Don’t call me Mum initiative and the drive to see parents as partners.

When our advisors come to assess a person, they aren’t seeing a client, a customer or service user. When we are invited into someone’s home, to talk about personal aspects of their life, we know we are talking to people with names, dreams and families who support them.

#4 We pioneer Co-Production

Sarah Clayton, our CEO, and Rachel Wright, Born at the Right Time, are presenting at the European Seating Symposium in Dublin in June about Co-production. We believe best practice is person-centred, family-centred and founded on professionals being led by the needs, aspirations and resources of the families they serve.

Please do come and see us at ESS, we’d love to say hello.

#5 Our training is family focused

Whether you undertake one of our Level 2 Postural care courses (on-line or through a credited trainer) or our Level 3 Measurement of Body Symmetry course, we make sure that the family’s story is front and centre of your learning.

We know that training professionals about why postural care is essential is only half the story. To be successful, practitioners need to consider how it can be achieved whilst recognising the family’s needs, limitations, their story and lives.

#6 Our equipment considers the needs of the carers/parents

Our newest equipment, the exciting APS system, not only works to the needs of the person who requires postural care but also recognises and addresses carer needs too. Its innovative design eases the burden of manual handling required by traditional systems. For more information or a demonstration, call our office today.

Simple Stuff Works is proud of being a family business.
‘From our family to ours’
It isn’t just what say, it’s what we do.

Our care of people with limited movement doesn’t #measureup

26 Feb 2018

How old are you?

How tall are you?

What do you weigh?

The fact is, whether we love them or hate them, our lives are framed with measurements.

From the abrupt awakening of our alarm clock telling us it is time to get up, to our food being measured in packets with used by dates emblazoned on top. Numbers walk us through every day.

A variety of measurements keep us safe on the road.

With measurements, we decide how long it will take to get to our destination, when to fill up and which carparks we really shouldn’t attempt to drive into with a roof box on top of the car! And numbers are also provide indicators of our health. Giving us vital information such as temperature, blood pressure or blood test results.

Numbers are really important but they only make up part of a much bigger picture.

When we are driving, we might be rushing to visit a loved one in hospital or heading off on holiday. When we are shopping, we’ll choose the largest packet of crisps that says half fat and then scoff the lot. Although numbers litter our world they aren’t the heart of what is really going on.

The same is true for postural care.

Good, person-centred postural care is focused on the person with limited movement. It considers their comfort, their sleep and their routine. At the centre is often a family, with their own priorities and perspective which must be considered when developing postural care strategies.

But like every other walk of life, measurements are important.

Standardised measurements show when something is working well. They tell us if something is getting better, worse or staying the same. If our child is hot, we will take their temperature and treat the fever. Then we monitor the impact of that treatment. We won’t necessarily label it as assessment, treatment and review, but that is what we do, every day.

The Goldsmith Indices of Body Symmetry is the only validated objective outcome for body shape changes. 

In the same way, we wouldn’t drive a car without a speedometer or buy something without knowing how much it cost, we shouldn’t care for people with limited movement without measuring for body shape changes.

The inability to freely move our body can lead to prolonged poor posture. Over time, a person who sleeps or sits in an asymmetrical position for hours and then days, can develop life-changing body distortions.

In the same way a doctor is not fully doing her job without taking appropriate measurements of our health, therapists must also measure changes to a person’s body shape in order to know the impact of interventions. Left unchecked, body shape changes dramatically affect a person’s quality of life and can become life-limiting.

It isn’t dramatic, it can take years.

It isn’t sexy, interventions are simple, boring and subtle.

But the impact on a person’s life, and their family’s life, is remarkable and life-changing.

The Goldsmith Indices of Body Symmetry is like switching on the light.

Check out our new animation #MeasureUp

 

The Goldsmith Indices of Body Symmetry objectively informs postural care practices. It helps professionals and families step out of the dark and see things as they really are. It helps inform families and professionals alike whether interventions are beneficial or not. It is time we #measureup. We need to make our practice of those with complex needs match the care they deserve.

A runner is motivated to keep training when their time shows an improvement or personal best. Someone is encouraged to maintain a healthy diet when the scales go in the right direction. For families who are bombarded daily with tasks, therapies and equipment, objective measurements help show when things are working and persistence worthwhile, or when strategies need to change.

Does your practice #measureup?

Do you know if what you are doing is really making a difference?

Are you able to objectively justify the interventions employed?

Can you show families how what they are doing is affecting body shape?

If you want to turn on the light to your postural care practice, contact us at Simple Stuff Works about attending one of our measurement courses today.

It’s time #measureup.

Together we can measure, position, and protect people’s body shape and therefore quality of life.

 

A new Superhero with unbelievable powers

17 Jul 2017

Behind the doors of Simple Stuff Works lies a deep, dark secret.

But the truth will out.

A short and brilliant animation by Simple Stuff Works may give us a glimpse of the secret life of Simple Stuff Works. In it we are introduced to a new kind of Superhero, Myth Buster.   

It seems the Simple Stuff Works cover is finally blown.

Traditionally, Superheroes are defined by their super powers.

Superhero

Super Powers

Superman Strength, flying, seeing through walls, has a really strong blow!
Spider man Can shoot webs from wrists, climb up walls
Incredible Hulk Turns big and green when angry and becomes incredibly strong
Cat woman Wears super tight shining black jump suit
Batman Very rich and has lots of gadgets

Myth Buster, however, has the long-awaited ability of…

Understanding the complexities of postural care

Myth Buster Video

The animation begins by challenging the idea that all those with a disability are not always in a wheelchair. In fact, disabilities can take all shapes and sizes. People with disabilities aren’t all depressed or need congratulated for getting out the house. And, it is pointed out, being disabled doesn’t instantly make you inspirational.

Then, in Myth Buster’s pursuit of postural care excellence, he Kepows and Booms his way through four postural care myths that can be barriers to quality provision.

1) Postural care isn’t just for children.

Anyone who has limited movement, at any age, with a variety of conditions can benefit from postural care.

2) Postural care isn’t in competition with surgery, pressure area care and freedom of movement.

They can all work together for the benefit of a person as they journey towards maintaining a good body shape.

3) HealthCare professionals, Simple Stuff Works advisors and other dedicated equipment providers never say one size fits all.

The focus isn’t on the product but rather on the person being cared for; their needs, desires and aspirations.

4) Body shape changes are preventable but postural care is a marathon, not a quick fix.

Quality postural care has many components and many barriers. Both professionals, carers and families benefit from accredited postural care training. Partnership with the families, practitioners and multidisciplinary team bring about the best results. Objective measurements of body shape changes and bespoke equipment that suits the needs of an individual is the corner stone of postural care that improves a person’s quality of life.

But it seems, the greatest power Myth Buster has is the ability to morph into many forms.

For excellence in postural care requires an army of Superheroes. It isn’t simply down to good equipment and informed professionals. It requires hard work and determination from those still caring at 2 o’clock in the morning.

Most importantly it needs engagement and persistence from the most important person – the one in the centre of it all. The person living the life that is immeasurably improved by minimising body shape changes.

But big questions still remain.

Like, why is the Simple Stuff Works office window always open?

How come you never see Anna Waugh and Myth Buster in the same room as each other?

And why do the Simple Stuff Works order so much Lycra?

Maybe, we’ll never know…

Election day, but nothing will change.

08 Jun 2017

Have you cast your vote? It’s today.

The snap General election, geared at making our nation more stable and stronger for the future, is here. For the third time in as many years, the UK sits on the brink of tomorrow.

There are certain experiences in life that bring out the best and worst in people. Parenthood, terrorist attacks and general elections are just a few examples that spring to mind.

The best and the worst

On any given day, I can be struck with pride at my ten-year-olds thoughtful insight into his brother’s needs. I get to take him aside and congratulate him for his kindness and care (with just a hint of parental smugness). A moment later I’m screaming at him for not having his shoes on (after being asked approximately a million times – no exaggeration).

The best and the worst.   

Last month, we heard stories of heroism as a homeless man stepped up and helped victims, taxi drivers gave free lifts and businesses became unexpected safe havens. Visions of destruction filled our TVs as we witnessed a heartless attack on our children in Manchester.

The best and worst.

On London Bridge, the lifelong dedication to help others came to an end as a nurse lost her life running to the aid of the wounded. The swift and professional response of the emergency services helped those injured and halted the attack of more innocent victims. Yet, across our social media and on street corners, this courage was tainted with hatred and vitriol against fellow country men and women of a different faith.

The best and the worst.

In election season, our memory is triggered once again on the determination and dedication of Jo Cox. An MP who lost her life trying to serve our nation. Next weekend, people from all around the country will honour her memory and values with the  Great Get Together. It’s aim – to inspire communities to come together and show that the attempt to divide us through her death has failed. Yet this week, the vile attacks against a public servant like Diane Abbott has stained our national press.

The best and the worst.

In the past couple of months, we have heard personal attacks against all party leaders. Slurs on reputation abound, as we’ve been called to make our choice for the sake of our nation’s future. Time and again we have been urged to vote ‘against’ a party rather than ‘for’ our values.

It’s Election Day, yet tomorrow will not change.

Tomorrow, I will wake to care for my kids. I’ll still get up to give a tub full of medications to my son via his PEG tube. It’s Friday, so I will do extra physiotherapy before taking him to school late. I’ll continue to fight for the care, services and therapies he needs. I’ll hoist him, care for him, cherish him and hopefully, laugh with him.

Then I’ll meet friends for lunch, maybe they voted the same as me, maybe they didn’t. Either way, we will talk and share our lives. Focusing on our similarities rather than our differences.

Bringing out the best not the worst.

Every day we get to choose what scent is stronger.

Hope or fear.

Unity or division.

Love or hatred.

Highlighting problems or solving them.

The best or the worst.

 

Tomorrow, Simple Stuff Works, along with a myriad of practitioners across our nation, will head to work determined to make the lives of the most vulnerable in our society that little bit better. It will be the same as it was today and the same as yesterday.

Tomorrow will not change.

They will continue to go the extra mile to serve the needs of families across our nation, no matter who occupies No.10 Downing Street.

Each day we are given the chance to be the best or worst version of ourselves.

And tomorrow will be no different.

What will you do tomorrow, to bring out the best in you and others?

 

Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.

5 Little things that make a big difference

17 Mar 2017

Little things can make a difference. I’ve always thought this to be true but recently it’s reality has seeped a little deeper.

When I worked as a nurse in A&E, I knew that even in the middle of emergency procedures, how I treated the patient and family would be remembered. As a parent standing over my fitting son while the doctors fought to stop an hour long seizure, this simple fact went from theory to reality.

As a healthcare professional and the mum of a child with severe and complex disabilities, I know that little things count. Seemingly insignificant details can change the whole atmosphere or outcome of an appointment or assessment when I meet a professional with my son.

Here are my 5 little things that make a big difference

1) Talk directly to my son.

Say hello to him, even though he won’t respond back. Acknowledging him directly means we all know why we’re here.

2) Look me in the eye, shake my hand, smile and introduce yourself with your name

(Ok thats four things but they take a few seconds to do.)

3) Before we part company make sure I know what you are going to do and when.

Then, please do it.

4) Give me a chance to ask you questions

5) Please ‘Don’t call me Mum’.

Although I am a Mum, I’m not yours. You can refer to me as ‘Sam’s Mum’ but ideally use whatever name I used to introduce myself at the beginning of the meeting. If you know my name, because we have know each other for ages, then definitely please use it. Using my name and not just a generic ‘Mum’, makes me feel as though you respect me, hear me and see me as a partner in my son’s care.

When the words I am listening to are hard to hear, how the professional makes me feel makes a big difference.
I have a dear old friend with Alzheimer’s. Very often she forgets what we have talked about. She forgets the words spoken between us but she rarely forgets how it made her feel. She will relay a time we spent together by the feelings she was left with.

I think the same is true for me, maybe all of us. Even when I don’t remember everything a professional says to me, I remember how it made me feel. Whether I felt my son was addressed as the central person, whether I was engaged, heard and respected.

Yes, there are a lot of more important things that will be said when we meet, but it is the little things can make a BIG difference.
The parent led ‘Don’t call me Mum’ campaign is highlighting one of those little things. For many parents, being called ‘Mum’ or ‘Dad’ by a practitioner in the middle of a meeting is irritating. Such a small detail can make a difference to how parents feel valued and respected.

So whether you are a professional, parent or both, join the campaign on Facebook or Twitter, wear your badge and let everyone know that you see parents as partners.

#parentsaspartners #dontcallmemum

The ‘Don’t call me Mum’ initiative is backed by Simple Stuff Works.

Rachel is a nurse, writer and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under‘. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals

The women behind Simple Stuff Works

24 Mar 2017

For many, Mother’s day brings a mix of emotions. Both men and women can sense the loss of their mother’s more acutely. Other’s are grieving being unable to parent children or that motherhood is not what they expected it to be. Meanwhile many of us women are pulling our hair out as we walk this complicated, exhausting and rewarding gauntlet called motherhood.

Simple Stuff Works is proud to be a family-run business, committed to putting families at the centre of its work. They proudly support campaigns like ‘Don’t call me Mum’ because they recognise how important it is to treat parents as partners and put families first.

Three generations of Simple Stuff Works Women

In both its past and present (and maybe its future), Simple Stuff Works has been pioneered by amazing women. So I asked Sarah Clayton (CEO) and Anna Waugh (MD) about their own mum and how being a parent has changed how they work.

How did your mum shape who you are today?

Sarah: My mum taught me that everyone is equal – but that systems and culture don’t always reflect that innate equality. Mum is the most courageous, authentic woman I know and I hope that I’m half as brave!

Anna: Our mum is the most caring, supportive and unstoppable woman. She taught us the value base which underpins Simple Stuff Works, one of respect, compassion and dignity. She is utterly relentless in her passion for postural care and her enthusiasm for her work has fed straight down to us. I hope we lead with the same passion and fire.

How has being a mum changed the way you work?

Sarah: I’m much more efficient! I can get more done in half an hour than I ever did in a full day before having children.  My kids also provide a great benchmark for my own internal quality control system.

Anna: Being a mum has changed the way I work in every way. When I am supporting families I always consider my own children and how I would want them to be supported.

How do you think your kids would describe you as a mum?

Sarah: I’m too busy… they often say that and that I should slow down (usually seconds before asking me to drive them somewhere they urgently need to be). They would probably say that I am bossy and that I nag them a lot… but I think they would also say that they feel loved and supported.

Anna: Funny, a bad cook and possibly a bit shouty at times! They’d say I was caring, kind and good fun too (I hope!)  

What is your greatest challenge as a mum?

Sarah: Remembering where they all are – genuinely. Keeping track of them, remembering to drop them off and pick them up again is a military operation in our house. The last thing I do at night is a roll call in my head… 

Anna: As a single mum and running a family business, I battle continually with guilt. I feel guilty if I have to work away, or if my kids have to be looked after by family. I worry that I spread myself too thinly. I’m trying my hardest to be present when I am with them and not be distracted by my emails or my phone ringing… but it can be a real challenge.

What is the most rewarding part of being a mum?

Sarah: Seeing them growing up into confident and happy young people. I wish that I could package up experience, knowledge and self-esteem in a tablet and make them swallow it… but then I realise that they are getting on fine and that fills me with pride.

Anna: Seeing their gorgeous faces when I get home, watching them grow and change, seeing their personalities develop. I am so proud of both of my children and I am so proud that, as a threesome, we achieve so much on a daily basis. Everything I do is driven by me wanting to provide them with the best start in life and I think that they have made me a better person.

What is the one thing you would like to say to the mum’s who come in contact with Simple Stuff Works?

Sarah: A big thank you for trusting us to support you. We know that your children, no matter how old they become, are the most precious thing on the planet – we will do all we can to help you to help them.

Anna: I would like any mum who finds themselves needing our support to know that we are absolutely dedicated to getting it right. We will support every family with compassion, dignity and respect. We are here to answer any questions that people may have as, at the end of the day, we’re here to support your family.

See, I told you they’re awesome.

There are so many challenges to being a mum and so many reasons to raise a glass and thank the women in our lives who shape and nurture us.

 Happy Mother’s Day

from everyone at Simple Stuff Works

 

Rachel is a nurse, writer and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading parent workshops as well as training professionals.

I’m not Super-anything and that’s ok.

16 Feb 2017

For about three seconds in 2005 (the year I became a mum) I thought I was SuperWoman.

It didn’t last long.

Unfortunately, for a good few years I then thought that I had to pretend to be Supermum. Every morning I donned my Lycra suit and tried to trick everyone into thinking I’m super-human.

Having a child with complex needs meant my to-do list was immense. Soon busyness became a badge of honour and before long my days were devoid of any rest or time to myself. The person I became wasn’t pretty.

I knew things weren’t right when I found myself choosing ankle
socks instead of knee length, because they took less time to put on.
Then breakfast became any food consumed before midday and  before long PIPs had nothing to do with personal independence payment  but a much coveted ‘Poo In Peace’.

I had tied up my worth as a woman and mother in all the things I did and because I didn’t value any of my tasks very much, I needed to do more of it. So I added quantity in order to outweigh the lack of quality in my workload.

I realise I’m not alone

I’ve been comforted recently by other parents who have blogged about doing less not more and I love this alternative guide to keeping your house clean by perfectionpending.net.

As with many parenting issues I find myself thinking it’s the same but different for a parent of a child with disabilities.

Slipping into a role where my needs are bottom of the list is not unique. Yet I know that the pressure of therapies, anxieties about the future and endless medical appointments make caring for my eldest son exponentially harder. In comparison, looking after my other two sons is a walk in the park. That isn’t to say it is easy (it’s a very muddy and hilly park), but it isn’t the same kind of hard.

But what makes this whole parenting thing much more difficult, isn’t the appointments or physiotherapy. It isn’t even the waking through the night for a decade – it is the possible guilt and regret.

It is walking around with a backpack full of ‘What ifs?’

What if I didn’t do postural care early enough?

What if it is because I haven’t stimulated his vision that his sight isn’t progressing?

What if being too tired to use the standing frame will mean he has to have a major hip operation?

What if someone had told me about this specialist therapy earlier, maybe it would have made a bigger difference?

What if I will never be enough of a mother?

The truth is, I can’t answer the ‘What ifs?’, no-one can. Because they are simply little rabbit warrens that lead to nowhere helpful. They just get deeper and darker and further away from the light. If we aren’t careful the load becomes unyielding and our expectations have no foundation in reality.

So, here is my alternative ‘What if?’

What if my son is no longer with me?

Will I regret not stimulating his sight or that extra hour in the stander?

Or will I regret not taking more care of myself and simply relaxing in his company? Maybe I’ve been asking the wrong ‘What ifs?’ all along.

And there is something else I noticed when I looked in the mirror.

I only have two hands.

No matter how many times I count – there are still only two.

And here are some other truths

I can only do my best with the information I have.

The day only has twenty-four hours in it.

I’m only human.

I can’t do it all, all of the time.

Asking for help and advice is good.

I would like this not to be true. I would like the mirror to lie just a little. Because it’s hard realising you aren’t Superhuman, but then it’s good. It’s good to know that I can ask for help with lots of stuff, even postural care – a decade after my son was born.

What is really surprising is that those at the end of the phone at Simple Stuff Works don’t shake a finger and put me on hold to ‘tut’ loudly, they encourage and inform. With care and insight they help our family, however they can, to go from where we are to somewhere better.

When I had this revelation, it caused me to take a very big deep breath. And I found a freedom that comes from letting go of the lie that it is my responsibility to keep the universe intact. So, I ask for help and take it when it is offered (mostly). I try to shout over the feelings of guilt with my armour of truths.

So, why don’t you join me, take a deep breath and repeat after me.

“I’m not super-human but I am more than enough.”

 

Rachel is a nurse, writer and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.

Where has the time gone…

17 Jan 2017

‘Where has the time gone?’

I think it every time I hear a new word from my one-year-old, every candle on the cake and especially as we start a new year. I’m still surprised every time I look at my kids and it feels like yesterday I was holding their tiny bodies in my arms.

At the end of 2016 on Facebook and Twitter were swamped with the overwhelming feeling of loss for those taken too soon. The deaths of celebrities within comedy, music and TV touched the hearts of a nation but, for many, the pain of bereavement was much closer to home and changed us in a profound way.

2016 was an epic year by any standard.

Brexit, Trump, Syria and the worsening refugee crisis dominated our news. We marvelled at the Paralympics, changed our prime minister, watched the five-pound note shrink and stalked Tim Peake in space.

At Simple Stuff Works we cheered on ou Olympians, resisted the urge to make the office a Pokestop and felt the seismic heartbreak of losing Russ, our beloved friend, brother, dad and colleague.

But this new year gives us chance to reflect on all we have achieved too. Sarah Clayton and the team have spoken at events around the world, including Naidex, OT show and Kidz event. Simple Stuff equipment has been sent abroad to charities in Bangalore, China, Romania and Rwanda. And we’re all particularly proud of the sparkly new website and the Multiplane Stabiliser.

But now it is 2017, so what next?

This year we will mark the Queen and Prince Philips 70th Wedding Anniversary and 20 years since the death of Princess Diana (Where has the time gone?). We’ll find out what Brexit really means and Donald Trump will become 45th president of the United States of America.

And if you don’t think they are much to look forward to, don’t despair, Phil Collins will be live in concert for the first time in fifteen years this summer and the 1970’s heroine Wonder Woman will hit the big screen – so all is not lost!

An as far as Simple Stuff Works goes they won’t stop beavering away to find pioneering strategies to help people of every age to maintain good body shape. In their pursuit to change lives for the better, they’ll be heading out to Nashville in America, Hong Kong, China, Scotland, Birmingham and beyond. Tess and the team will passionately continue to train professionals across the country as well as participating in research and contributing towards the nurse training course at Birmingham City University.

Simple Stuff Works continues to put families at the heart of their business.

In collaboration with Bringing Us Together, Changing Our Lives and Newlife we will be campaigning for good postural care provision to be seen as a human rights issue. Because poor postural care impacts every aspect of a person’s life and the lives of those they love.

So, I’m excited as we head into 2017 and all it might bring. No doubt, it will continue to be a rollercoaster and it’s probably best we don’t know what’s going to happen next.

But as Simple Stuff Works continues to change the world through research, training, campaigning and innovative products, we can all participate in changing lives, one body at a time.

Rachel is a nurse, writer and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under‘. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.

12 Days of a Complex Christmas

15 Dec 2016

Cliff Richard and Slade are unashamedly blasting out from music systems around the country. The usual suspects have decked their homes with enough lights to be seen from space. ‘Home Alone’ and ‘It’s a wonderful life’ are scheduled several times over the next couple of weeks. Simple Stuff Works have made a goat looking ‘Sian Angel’ (the office is known for its creativity) and it’s far too warm for snow.

It must be Christmas.

Like many celebrations, Christmas causes me to reflect. To think about this life I’m living and those I love.

A complex Christmas

For a complex family like mine, Christmas too is complicated. Just the gift list alone makes me infinitely aware of the multitude of people needed to make our lives function.

I’m so thankful for the carers who’s alarms are set for ‘silly o’clock’ to help care for my son. For the teachers who not just spend so much time but their heart and soul into their work. I’m grateful for the school transport and support workers who decorate buses and are adored by our whole family. For the numerous therapists who listen to my endless moaning and always do their best, even when cuts make their job so much more stressful. For the pharmacy that know my voice when I call with a request and the seamstress who under charges me every time she’s adapts Sam’s clothing.

Life is so busy and too often I don’t take enough time to thank those who make our world go round.

To All of you

Thank you

It isn’t just the number of Christmas presents, it’s how different our lives are compared to others. When choosing a gift for my other two sons, it is a matter of whittling down all the options. For Sam I (not so quietly) dread being asked what to buy him because the answer is inevitably, “I have no idea.”

My son will open gifts on Christmas day but he won’t really get it. He’s likely to be upset by the change in routine rather than delighted with anything ‘new’. With heightened expectations on one day, comes the increased likelihood of disappointment and frustration. We are learning not to try and do it the same as everyone else because it can’t be done. We have to work out our own traditions and ways of celebrating that work for our complex, unique and wonderful family.

So, since I haven’t properly embarrassed myself since I put a picture of my face on Arnold Schwarzenegger’s body, I thought I would lighten your day and give you an early Christmas present. As a special treat, here is my own version of The 12 Days of Christmas.

Watch the 12 days of a Complex Christmas Here 

Thanks to David Stanley at the Music Man Project for the accompaniment.

(Don’t worry I won’t give up my day job…)

The 12 days of a Complex Christmas Lyrics

On the first day of Christmas my diary screams to me

A visit to the GP

On the twelfth day of Christmas my diary screams to me

Twelve Thank-you presents****

11 drug dose changes

10 Teacher’s targets

9 Nurses nodding

8 OTs tutting***

7 Physios flexing

6 Carers cancelling**

5 sleepless nights

4 changed pads*

3 feeding tubes

2 toilet chairs

And a visit to the GP

* we only get 4 in a 24 -hour period (I know of others it’s even less)

**we have wonderful carers who only cancel when they have to

***OT’s only tut at me when I lift – instead of using the hoist

****I buy LOTS more than 12 thank you presents but that was as high as the song goes.

So there it is, our Simple Stuff Works Christmas Carol.

It’s a great big shout out to all our families who will work so hard over the Christmas period and all those supporting professionals who will continue to work through the festive period.

From all the Team at Simple Stuff Works

Merry Christmas and Happy New Year

Rachel is a nurse, writer and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under‘. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.

Training to Change the Future

11 Oct 2016

I wasn’t given any training to be a mum – I wish I had. Eleven years on, I can be both super-human and super-useless in the same day. In truth, the super-human bit normally filters away by the time I get out of bed but in my dreams I nurture my children with ease and finesse.

My nine-year-old helpfully told me last week that he was thinking of writing a book titled, ‘My mum’s epic fails’. He says he has a wealth of material, and I believe him.

As a mum to a child with complex needs, I have learnt a new lingo, new skills and experiences. I do my son’s stretches like a physiotherapist, I adapt equipment like an OT, I measure calories and nutrients like a dietician. I even adjust equipment like a technician and programme software like a gaming geek.

Last month, I got chance to broaden my repertoire of experience even further. I was given the opportunity to attend the Train the Trainer course provided by Simple Stuff Works.

When I have training in the theory of my son’s therapy, I become enthused to make it happen.

When I don’t see the point, it quickly drops off my very long to-do list. In many ways, postural care is one aspect of my son’s life that feels relentless.

He can’t escape the constant pressure from gravity and his tightening muscles, so neither can I. Every day and night there is a battle raging within his body, as it has the tendency to contort and curl. Some days the task feels fruitless and overwhelming.
On the morning of the training, I woke early in my hotel room. A whole night away made me feel like I was on holiday. My alarm was set for a lazy seven but, unsurprisingly, I couldn’t sleep past six. I showered without thinking about lunch boxes and had breakfast without doing three other things at the same time.

Then I nervously waited for the training to begin.

Would I leave with a truck load of guilt about what I haven’t been doing? What would I learn? Would I leave feeling super-human or super-inept?

Well, I needn’t have worried. On the course I met Tess and Sarah and the teaching was informative, practical and relatable. I did see the stuff that I hadn’t done so well but it was swamped by all that I could still do. I was given a tool kit of knowledge that made me feel equipped to make a difference to improve my son’s posture and future comfort.

The training brought me into a new light.

I was clearly shown the challenges we faced but then given the techniques to change the future – one pelvic tilt at a time. Such a vast range of people came on the course. It was great to sit alongside the professionals, as another type of professional – a mum.

I have come to realise that  Simple Stuff Works are passionate about postural care but they are also passionate about families. They work towards limiting long-term skeletal problems in children with complex needs using simple and effective 24-hour postural support. Then they share their knowledge and expertise, not just with professionals but families too.

And it doesn’t stop there.
All the Train the Trainer courses have the family’s perspective firmly at the foundation of its teaching.
Because Simple Stuff works understand that for my son, it is me and my husband who can change his future. We are the cornerstone of good postural care. It is us that need to understand the difference it makes and it is our sleep that gets disrupted when our son is uncomfortable.

After just the first of three days training I came away re-impassioned to change my son’s future and keep postural care in focus. Tess described it brilliantly;

I went in a parent and came out a warrior.

For more information about the Train the Trainer course you can contact trainingadmin@simplestuffworks.co.uk 

Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under‘. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.

Autumn is here… by Rachel Wright

20 Sep 2016

The first day back at school photos have faded from social media. The shiny shoes are scuffed and at least one item of uniform is already languishing in the lost property bin. The autumn leaves begin to decorate our streets with a riot of colour and every sunny day now feels like an unexpected gift.

As much as I love the summer, I’m glad it’s autumn. It’s time to collect conkers and pick the last few blackberries. Although I will miss the brighter days and warm sun on my face, the summer is my toughest season.

Most of the year I juggle life well.

My home, my work and my three kids are kept in the air without any major mishaps (mostly). But summer stretches me to the limit. As the teachers’ smiles widen in July, my shoulders begin to sag.

Now don’t get me wrong. I love my kids. Not just in a ‘I’m quite pleased I had them’, kind of way. I’m their biggest fan and number one admirer. They fill my heart every day and put more smiles on my face than I dreamed possible.

Being a mum has turned me into a lioness.

Proud and prominent, I work hard to keep my brood safe and provided for. But, and it is quite a big BUT…this parenting lark (especially the severe disability type) is a truly tough gig. And the six-week summer holidays are hard.

I’ve decided I only have a certain amount of ‘mum’ in me.

I have a portion of smiling, patient, creative ‘mum’ and then I’m done. During term time, this amount of mum is sufficient to see me through. Sometimes, I even get to bath time without completely loosing it. But in the summer, well the summer is a different story. With all of my kids home twenty-four hours a day, my ‘mothering well’ can run dry by midday.

The vast amount of work, and my limited number of hands aren’t the only problem. It is also the increased expectations placed on ‘holiday’ time. On any ‘normal’ week I can go from roaring, protective lioness, to limp and sobbing in the corner; simply because of one professional’s comment. I can be fiercely arguing my son’s needs in one instance and then wondering if I have enough energy to lift a cold cup of tea to my lips the next. But in the summer, expectations are heightened and the gap between my life and others seems even bigger.

I can’t be spontaneous and nip to the beach for the day. I enviously watch other mums sitting together chatting, as their kids play around them. I want to fill my Facebook timeline with lazy summer photos but instead our summer holiday’s feel like the packaging has been mislabelled.

I need to write to the complaints department about false advertising because the summer holidays are seriously lacking in, well, holiday.

The word ‘holiday’ implies rest and recuperation but there isn’t much of that going on. Like Sarah Clayton, from Simple Stuff Works, said at the excellent Got My Back Conference this month, ‘Gravity is still on duty 24/7’. For our complex kids, epilepsy doesn’t have a holiday, neither does reflux nor postural care. The turning, toileting, medications and enteral feeding don’t fly to Spain for the weekend, just because our family want a break.

I have said before that cherishing the summer moments is what life is all about and this year was no different. We had a truly incredible holiday adventure, traveling through northern Europe. We certainly stacked up some lasting memories and selfies.

However, now it is autumn, my main focus is on having a cup of tea that is still hot. I might even stock up on some of my ‘mum’ reserves (it’s only a few weeks to half term you know).

I just wish the super-rested and over-excited professionals at school would remember that although I love and appreciate their enthusiasm after their long summer break, now that autumn is here – I just want a holiday.

Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and recently published her memoir ‘The Skies I’m Under. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.