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Category Archives: sleep system

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.

Growing old and living well.

17 Oct 2017

Everyone is getting old!

Dawn French is 60.

The Queen is 91.

Maculay Culkin is 37.

And today, you could be arrested by someone born the same year Wannabe was released by the Spice Girls.

We’re all ageing.

In the UK today, there are over 11.8 million people aged over 65 with 1.6 million over 85 years old. The predictions are that by 2040 nearly a quarter of the population will be over 65. It seems we are living longer and with that comes the potential for increasing health needs.

In our recent animation we celebrated the International Day of Older People.

On the 1st October 2017 the United Nations theme was Stepping into the Future: Tapping the Talents, Contributions and Participation of Older Persons in Society.

The UN’s aim was to explore the participation of older persons in various aspects of social, cultural, economic and political life. In our short animation, we followed the lives of Max and Phyllis.

In 1955, Phyllis is a 19-year-old art student with a flair for dancing at the weekends. It is also the year baby Max is born, who grows into a young man with a passion for football.

With the blink of an eye, Phyllis glides through being knee deep in children and her thirties, to find herself in her fifties. Her children have grown and flown the nest, leaving her teaching at the local art college and still dancing at the weekends with her husband.

When Max becomes a father, his footballing dreams are lived out through his daughter who plays for his favourite premiership club. Yet his favourite place remains the football pitch where now he spends his time shouting from the side-lines.

After tragedy hits the lives of Max and Phyllis, they both find themselves in need of twenty-four-hour care.

Because we love happy endings at Simple Stuff Works, Phyllis and Max receive excellent support in hospital and a residential home. Phyllis is assessed and sits every day in a good chair.

A chair not too shallow, too wide, too deep, too short or too high.

Like Goldilock’s chair, it is just right.

And after years away from painting, Phyllis picks up her brushes again and finds a long-lost part of herself. Having the right postural care support means she can create and participate. She can contribute to her local environment and be who she is.

For Max, a long period of rehabilitation follows a stroke. But thankfully, medical staff know that his sleep position affects his ability to sit and be active. So, with help from the multi-disciplinary team, Max’s night time positioning is comfortable, symmetrical and safe.

And for Max, having high care needs, does not stop him from showing up at the football pitch to coach the local girls’ team. Because with imagination and dedicated team work, every person can be who they are, contribute to society and live a life that reflects their own story with their unique skills.

The story of Phyllis and Max is fictional, but here at Simple Stuff Works we know many Phyllis and Max’s whose lives are transformed with good postural care. That is why we are so passionate about what we do.

Real life Phyllis’s get to continue their hobbies because of good seating.

Real life Max’s get to participate in their community because of a good sleep system.

In the coming months, we hope to share some of these stories with you. Tales of real people and real lives that have been touched and changed by Simple Stuff Sleep Systems and good 24-hour postural care.

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.

 

 

Simple isn’t the same as Easy

17 May 2017

The simplest way to get fifty on a dart board is by hitting the bullseye, but it isn’t easy.

Simple Stuff Works prides itself on offering uncomplicated solutions to prevent and correct body distortion. For those with limited mobility, postural care is a twenty-four-hour occupation. Seven days a week. Three hundred and sixty-five days a year. So, the solutions need to be simple.

At Simple Stuff Works we understand that simple isn’t the same as easy

It’s simple that your two-year-old needs to brush their teeth – but it isn’t always easy to get them to do it.

It’s simple that if you eat that large pizza you’ll put on weight – but it isn’t easy not eating it (especially ifyou are in our office on a Friday afternoon).

It’s simple that going for a jog will improve your mental and physical health but, where did I put my trainers?

Here at Simple Stuff Works we help families work out how to make the simple easier

Within our popular Train the Trainer course, we help practitioners understand the many factors that affect implementing night-time postural care. Sleep is a very personal and individual experience. We all sleep in different positions and have different preferences.

The foundation of every sane household is sleep

Sleep deprivation is an implement of torture still in use today – just ask any new parent. For families of those with complex needs, sleep is often as priceless as gold and rare as a four-leaf clover. We understand this, and we want our sleep systems to promote sleep and well-being in the lives of the whole family.

A person that doesn’t sleep can’t concentrate to learn and is more likely to suffer health problems. A parent that doesn’t sleep is prone to weep, shout and need coffee to sustain them through the day. A good sleep system helps a person to sleep, giving the whole home much needed rest.

When you call us to come and assess a person’s needs, our advisors pride themselves at looking at the whole picture. We are passionate about person-centred care and that is why it is important we come to your home. We are committed to finding solutions that overcome an individual’s unique difficulties and providing solutions tailored to their needs. Often the solution is not a quick fix, but requires time, partnership and creativity.

Good postural care is a process

No piece of equipment is good enough to meet everyone’s needs.  Even though our multi-plane stabiliser is flying off the shelves, we won’t ever send out a piece of equipment that we aren’t confident suits the needs of the person using it. Our advisors are not paid commission and have no financial incentive to recommend equipment. Their primary concern is serving you well.

Sometimes a solution will require incremental steps. At Simple Stuff Works we recognise and celebrate the individuality of our clients and recognise their need for bespoke solutions. With families and care agencies, we want to guide you through the process of assessing where you are at where you want to be.

Postural care is our passion. Protecting body shape for the most vulnerable is our expertise.

We know that life is complicated for many of our families and we are determined to make our simple solutions as easy as possible.

Do you need advice on postural care?

Are you concerned your family member needs extra support?

Have you noticed changes in body shape?

Please call our advisors on 01827 307870 and we will be more than happy to help.

The unanswered questions and simple answers

10 Apr 2017

When a child is first diagnosed with a complex medical condition or disability, a tidal wave of unanswered questions sweep through life.

For me it was as though, one minute I lived in a town that I recognised, one I had lived in my whole life. A town with familiar faces, understandable street names and identifiable buildings. Then the next minute I was thrust into a new environment. A place where the landmarks were unfamiliar, the people dressed differently and spoke another language.

Soon my brain is whirring with long words that I couldn’t pronounce, never mind spell. And in every new conversation with medical teams more words and new advice were hurled across to my side of the table.

And all this time I had my own unanswered questions

Why did this happen?

Who is to blame?

What went wrong?

Why my son?

Why me?

Why now?

What could I have done differently?

For many parents, these questions that will never be answered, they simply sit in our lap taking up space and energy. It can be tiring carrying around unanswered questions and can make it even harder to engage in conversations with doctors and therapists.

Because in this new town, a parent can be speaking one language and the therapists another. The parent wants to know why it happened, while the therapist wants to instruct what can be done. A parent is desperate to know what the future might look like but all the therapist can do is tell of things that might make a difference – to an unknown future.

Parents instinctively do all you can for a child – everything.

We try every new-fangled therapy, medication and specialist piece of equipment. Anything that will make a difference because we want to make it better – we want to fix it.

But before long there is saturation point or at least exhaustion. It isn’t possible to do everything we’ve been advised to do. We only have two hands and twenty-four hours in the day, and we still have to eat and go to the toilet.

It is even harder to be motivated when we feel worn down by unanswered questions.

At every appointment,  there is hope that we might be relieved from the weight of one question. Just one ‘why?’ that we can lay to rest, but it rarely comes. Instead I’m given even more suggestions, more advice and it can feel overwhelming.

Sometimes I reminisce of the days back in my old town, where life seemed more simple, easier to understand and I long to go back.

But then a day comes when a therapist instructs me of a therapy that makes sense. Something I feel is achievable. I’m given a reason to do it and it’s a reason that I understand…

Because the future is not yet written

I realise along with the unanswered questions is an unwritten future. One that, as a parent, I can influence. Click on this short animation to see the simple and profound ways postural care can impact the life of a child with complex disabilities; his life and his future.

There are so many unanswered questions that remain. But like it says at the end of the film;

‘I take the advice I’m given, along with the challenges of real life and do the best I can. Because as a parent I can make a difference to my child’s quality of life and future.’

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.