Erbs Palsy Information Day

Obstetrical Brachial Plexus Palsy – a 21st century approach

 

On Friday 23rd June I attended our annual study day as my first ‘official venture’ as Trustee for the EPG. This year the day was specifically for Physiotherapists and Occupational Therapists and centred around the ongoing care provision professionals give for those with the condition. All the trustees worked seamlessly together to ensure our guests had a warm welcome and all their needs were attended too.

Each guest was given a pack on arrival which contained some relevant brochures, an itinerary of the day, presentations which were to be given by the speakers, a free notebook and a pen. Everyone loves a free pen! These were a huge hit and I even had two physiotherapists ask for more of the ‘Care of a baby with Erbs Palsy’ brochures as they wanted to hand them over to the health visitors and midwifery teams in their trust to ensure families have correct information immediately after their child has been diagnosed.

Our first speaker was none other than the Prof himself. Professor Kay talked animatedly for the first forty five minutes describing the condition to the attendees, ongoing studies he was involved in and his experiences of treating OBPP for the past twenty five years.

Following him, Dr Maggie Bellew, a clinical psychologist from Leeds spoke about the psychological aspects families and those with the condition have. She spoke about a grief cycle parents go through when their child is diagnosed and stressed her door is always open to those parents who need a chat or some extra help! She described the psychological aspects for those living with OBPP highlighting the specific difficulties of the teenage years and also at a younger age (around 6 years old) when the child begins to realise they are different. I found this extremely interesting to hear and it really reassured me as a parent that the door is open for my family and Theo if we ever need Maggie’s professional advice.

After a short coffee break Sarah Taplin, a specialist physio spoke about the assessments conducted on a OBPP child. The physio’s seemed especially keen at this point and had lots of questions about this. They were so intrigued a number of them stayed behiind after the day was finished to watch further video Sarah had brought along regarding assessing movements and scoring systems. As a mother of a child with a Group 4 + horners injury, it was especially intriguing as we had never experienced these assessments before.

I feel that now Theo has some movement when he is assessed, I will understand what they are looking for. If anyone is unsure of what is happening or what they are looking for when their child is being assessed don’t be afraid to ask. All physio’s will gladly explain the process to you.

Our very own Trustee Jackie very bravely shared her story regarding her son and some of the difficulties they had encountered during his journey. As a mother I could totally identify with Jackie’s story and I thought she did us mothers proud. Well done Jackie!!

After lunch, which everyone enjoyed, presentations resumed with Grainne Bourke ( a surgeon from Leeds) discussing primary nerve surgery. She described the process which happens during a graft, the resting period and also the aftercare including the commencement of physio. Another surgeon, Rob Baines, spoke of common secondary surgeries which they perform. He described success rates (which are pretty impressive) what happens during surgeries and what happens after. I found this very informative as we are awaiting Theos’s next surgery!

Emma Hannaway, an Occupational Therapist, spoke of the transition into school and how children are supported throughout their education. Things such as PE, handwriting and eating in school were discussed. It was very reassuring to see what support networks are there for our children to ensure the transition is as smooth as possible.

Undoubtedly, the most inspirational talk of the day was delivered by Kim Hawksby who suffers from Erb’s Palsy herself. She gave amazing insight into the highs and lows of living with the condition and gave the physios invaluable advice on treating those with the condition. It was witty yet heart wrenching at the same time and I urge anyone to speak to others with the condition to find out more. She showed us her incredible art work which depicted her thoughts and feelings when psychologically struggling. She also descirbed her frustration at being in the category between disabled and non disabled. Some great tips were given into food choices to make cooking easier and just life in general. I was particularly impressed with the grated cheese idea! Kim has attended University and is currently working as an Occupational Therapist in India. She is living proof that Erb’s doesn’t have to stop you following your dreams although her road to success was a little bumpy! Kim, you are a true inspiration!!

 

All in all, the day was amazing. Everyone seemed to enjoy the day so much and take away invaluable information to enhance their professional development. Hopefully, when shared with colleagues this will stop some of the common problems we have such as being told ‘it will get better,’ not being referred to a specialist at 12 weeks or before or being discharged from physiotherapy care before the child is skeletally mature. I, myself, learnt so much more about the care involved with those with OBPP. These days are amazing and achieve so much. It really is amazing how one small Charity can make such a difference.

Amy Hopper