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Category Archives: Physiotherapist

Dear Professional…

27 Sep 2018

Dear Professional,

There are so many of you, I’m not sure where to begin.

Maybe you’re the Physiotherapist, OT or Speech and language therapist who arrange with each other when it is best to meet, then ask I comply with the time and date. Please know I’m grateful for your input, skills and knowledge. My son and our family benefit from your care but remember I have a diary too.

I am an equal partner in any discussion about my child.

Maybe you’re the receptionist (GP, pharmacy, school, artificial feed company) who have to handle my call when I’ve run out of my son’s medications, pads, syringes or milk.

Please forgive my forgetfulness, I have a lot on my plate.

Maybe you’re the teacher, learning support worker, school transport assistant, SENCO or visual impairment teacher who hears the brunt of my frustration and floods of tears. Please know I’m only focused on trying to get the best for my child; even if I don’t show it well. Help me see you what you think is best for my son too.

Maybe you’re the carer who walks in my home at 7am in the morning or 10pm at night to care for the son I want to mother alone. Please know, I appreciate you being here; your support and tender care. But really, I’d rather this was different. I wish you didn’t need to come.

It is hard watching you do what I want to do alone.

Maybe you’re the engineer or company representative who knocks on the door talking about equipment we need but I would rather we didn’t have. Please know I’m grateful you use your innovation and creativity to serve families like mine. But don’t forget,

I miss just popping to town for my son’s Christmas trike like everyone else.

Maybe you are the person who helps when the splint is broken, machine won’t stop beeping or hoist sling is too small. Maybe you’ve asked me to do this one little thing…

Please be kind, I’m doing my best but life just seems to keep on happening.

Maybe you’re the Specialist Nurse or Consultant who thinks,

‘Surely one appointment a year isn’t too much to ask.’

Please know I want us to communicate well and appreciate your valuable input.

It is never just one appointment, it is always one more appointment.

Maybe you’re the expert coming to give advice about a sleep system, specialist chair or wheelchair. Please remember this is my home and you are talking about the private life of my family. Please inspire me to see what you can see. Help me understand what can be done rather than walking out the door and leaving my good friend ‘guilt’ behind.

Dear professionals, you are an army of wonderful people who support families like mine. Often you go above and beyond what is expected. I don’t underestimate how fortunate we are to have such a wide variety of specialists supporting us

Each day I wake and try to stand tall amongst you all and yet I can feel lost.

I can quickly feel overwhelmed with yet another task on my to-do list.

In my life as a parent carer, I can feel so small.

With each diagnosis, therapy, appointment and piece of equipment, the authority I have in my world shrinks.

It is you who dictate my daily life and weekly routine.

Often, I am left feeling dwarfed with no real control.

But dear Professional I want to say thank you.

For listening, working, caring and trying. Thank you for so much but especially when;

  • You take the time to listen as well as speak
  • You look me straight in the eye and know my name
  • You see my child the way I do
  • You practice in a way which puts power back in my hands
  • You acknowledge the pressure and strain I face
  • You demonstrate your value and respect for who I am and what I do
  • You show me we are a team and all working towards the best for my child
  • You inspire me and trust me with knowledge and skills
  • You support me, especially when the tears are ragged and the day is hard

Thank you

 

Written by Rachel Wright for Simple Stuff Works.
Images by Nicola Parry Photography 

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.

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.