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Karen Attends Transverse Myelitis Society

Introduction

An Invitation to take part in an event in one of the most beautiful parts of the world seemed an opportunity not to miss. So, when the Transverse Myelitis Society (www.myelitis.org.uk) were looking for Health Care Professionals to join them at their 3rd Family Support Weekend, I put my hand up! I came away from the weekend feeling completely in awe of the young people and their families.

The Weekend

The weekend was held at the Calvert Trust, near Kendal. Calvert Trust is a residential centre offering adventurous outdoor experiences for people with disabilities. The weekend was a time for kids with either Transverse Myelitis, Acute Disseminated Encephalomyelitis or Neuromyelitis Optica, their siblings and parents to have fun!

Friday evening started with dinner and an ice breaking game in the gym. It was obvious that some families had met before but that for others they were there for the first time. The kids quickly got stuck into a game of basket ball. The ice- breaker game involved finding facts out about everybody. My credit rating rocketed with one little girl when I could fill the box “met a celebrity” – Harry Styles is from my village and went to school with my kids.

The weekend was action packed. We enjoyed archery, horse riding, bush-craft, zip wire, assault course, canoeing, swimming, physio sessions. The atmosphere was buzzing – the dining room full of chatter. Some children were wheelchair users, some used sticks or crutches however these truly were invisible – apart from needing to use the tail lift on the bus, everyone just got stuck in to the activities.

The Q&A

Part of the weekend (and the reason I was invited!) was a Q&A session with a variety of healthcare professionals – OT’s, Physio’s, Doctor’s, dietitians – firstly with the parents and then with the children.  Some questions had been written down before hand to get discussions started. Barbara (one of the organisers for the weekend) facilitated the discussion. In the parents’ session, the wealth of knowledge in the room was astounding and whilst the professional were able to clarify and explain some issues – by far the greatest knowledge and support came from the individuals themselves.

The anxiety for some parents whose child had been incredibly sick, left with residual difficulties – sometimes hidden, like incontinence; and the uncertainty whether there would be recurrence was apparent. However the support they provided each other seemed to provide valuable help. When it was the time for the kids’ session, the professional had little to add. As always, when working with children, they never cease to amaze! Every question that was raised was answered by another child. The discussions were very matter-of-fact. It was the most awesome hour I’ve spent in a long time!

Listening is Important

As part of my everyday work, I am so used to considering difficulties and barriers a person faces and help to find solutions – often not an easy task. Whilst I was able to provide some suggestions over the weekend; it was great to see everyone just getting on with the activities. It was a reminder to me, that whilst I might be a professional with knowledge, it is vital to take time to listen to those who know most – those individuals facing challenges on a daily basis in order to enable them to live life to the full and to work out the solutions together.

 

Written by Karen Vercoe, Children’s Occupational Therapist

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