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Category Archives: Quality of life

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.

Lots of famous people and Gethin Jones: BAPs 2018

08 Jun 2018

Gethin Jones met my husband the other day.

‘Who is he?’ I hear you ask.
Well, my husband is the handsome man in this picture, and has been the leading man in my life for over twenty years.

Gethin Jones (the other bloke), well I used Google to research him. It seems he was a Blue Peter presenter long after my time but you might also know him as the chiselled faced, bright eyed bloke from Strictly Come Dancing or …presenting various television shows. I found him to be warm, professional and a genuine man. And should you happen to touch his left arm in mid-conversation you might notice he has very firm biceps.

Meeting my husband was such a momentous occasion for Geth (best buds now) that he took to Instagram to tell the world. This portentous occasion came about because I had the privilege of being the finalist of the BAPs Awards, Bloody Awesome Parents Awards, run by My family Our Needs and Bringing us Together.

It was a glitzy affair in Coventry which brought together the bloggers of parents of children with disabilities. The tables were perfectly set. Music and chatter filled the room, while the lighting made us all appear slightly blue; which was great as it camouflaged the rose-tinted cheeks inflicted by free prosecco and jittery nerves.

It was always going to be a great night. Pack a room full of people who write about their lives, wear their hearts on their sleeve, share a rare form of camaraderie and who rarely get a night out – and you create a heady cocktail of community, laughter and letting your hair down. It is uncommon for a room to be packed full of people who understand each other in a deeper way. People who recognise the pressures, the joy and rollercoaster of emotions from being the parent of a child with additional needs.

It was also a roll call of blogs which I avidly read and make me feel a little less alone.

Some whose children have very different conditions to my own like:

Joseph and his Amazing Spectrum Coat (Tina Medlock) – she shares the truth about life with her son who has autism and she might swear a bit… actually, a lot. Here she is doing her Catherine Jenkins operatic impression on the night.

Mamma Unexpected (Hannah Young) – she’s fierce and funny and I want to be like her when I grow up. She developed Girl Tribe a non-judgemental place for women to get together and shout about how great they are (and they have cool T-shirts).

Autism from a Dad’s eye view (Kevin O’Neill) – won best microblogger and raised the cool stakes in the room by a mile.

 

 

Stories about Autism (James Hunt) – took it all in his stride having won at last years awards.

 

 

This photo of Geth attempting to take a selfie of James and Kevin would suggest a boy crush was flourishing on the night.

 

 

Autism kids on tour – Autism without limits (Star Harford) a new blogger on the block giving useful and dynamic advice about places to go and things to do with children who have autism.

 

 

My kid loves Broccoli (Annie)– her chatty and informative blogs drop into my mail box regularly.

There were also some amazing finalists missing:

Faith Mummy (Miriam Gwynn) – who writes about her two very different children with autism. Her daughters own post, The reason I don’t like to eat, and is an insightful and powerful read.

Revelations of a Slummy Mummy (Lucy Parr) – my friend Lucy is lyrical and witty, with more determination in her little finger than most people have in their whole body.

But then there were other bloggers walking a very similar path to mine

My Daily Miracle (Rochelle Fellows) – who writes with authenticity and love about her beautiful son who is the spit of mine ten years ago.

Little Mama Murphy’s (Emma Murphy’s) mum stole the show when Gethin revealed she had said out loud what half the women in the room were thinking; offering him the other side of her double bed that night. However, Emma was there, not to get her mum a date, but because her blog Dear Doctor beautifully depicts what is so often happening under the surface of routine interactions.

When she isn’t swooning at Gethin Jones, Emma recently shared how, with thanks to the support of Simple Stuff Works and the private physio Tess, her son’s hastily deteriorating curvature of his spine has been halted. A profound testament to professionals working with families like ours that taking the time to inform and educate can make a tangible impact through equipping parents with the knowledge that can change their child’s life.

But the person who probably impacted the most people in the room was Nikki Lancaster from Living with Lennon.

Amidst the fun and frivolity, Nikki talked about her son Lennon who died suddenly on 3rd August 2017 and without dampening the mood but with dignity and poise, she challenged everyone in the room to think about how we give our children a good death, not just a good life.

And for some of us sitting with fizz in our hands that reality was poignant and true. ‘It’s about quality, not quantity’ she said simply. It’s a truth which remains just as important when dressed to the nines and hoping to win an award.

We aren’t good at talking about death. We try to parcel it up and save it for darkened rooms with boxes of tissues. But Nikki showed everyone in that glitzy room full of smiles and laughter that as heart-breaking as loss is, it can be done well; leaving the legacy of our loved ones continuing long after their last breath.

Gethin met my husband  the other night, right after he awarded me with the Blogger making a Difference Award. If you want to imagine how it happened, think rabbit and headlights. I was shocked. I didn’t even look at my husband after my name was read out. I simply stood up and started walking towards the stage like a dazed gazelle (it was elegant – I didn’t stack it up the steps).

It was a fab night, with the best biceps in the room going to…the husband.

 

 

Professional photographs courtesy of Ravi Chandarana and My family our Needs.

Written by Rachel Wright for Simple Stuff Works.

Rachel is best friends with Gethin Jones, a nurse, author, speaker and mum living in Essex with her husband and three sons. 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.