AKU Patient Workshop 2019 - Garrod Day Special

In today’s blog, we look at our brilliant patient workshop held in Liverpool on the 25th November, Garrod Day! 
 
Our UK patient workshop was held on a very special day this year, Sir Archibald Garrod’s Birthday, the 25th November. We celebrate his birthday every year with coffee mornings all over the globe and this year we made it even more special by hosting our annual UK patient workshop on this date.


Like previous years, we held our workshop at the fantastic Bluecoat in the centre of Liverpool. The workshop started at 10 am with AKU Patient and AKU Society trustee, Tony Esmond handing out delegate bags to everyone and our Garrod Day celebration cake was proudly on display. 

 
Our Patient Support Manager, Lesley, welcomed everyone and introduced Alev Sen, a PhD student studying at the University of Cambridge. Her project is looking at the experiences of AKU patients and the practices of treatment for AKU in UK healthcare. She talked to us about her project and the ways patients can get involved participating.
 


National AKU Centre Dietician, Shirley Judd, then talked to us about the role of diet and exercise in patients’ lives, especially with those taking nitisinone, where the protein intake must be monitored and at a certain level. We learned some interesting statistics too.
 
Ali Hutton from Vitaflo, who develop specialist nutrition products for specific disorders, spoke to us about GMP, a protein substitute, tasting (and smelling!) better than the usual replacements based on amino acids. Vitaflo also had a stand at the workshop, with more of their products for patients to try out.
 


After we had built up an appetite, we went on to have our first tea and coffee break and announced the exciting raffle we had on offer. Our Fundraising Officer, Juliet, was selling raffle tickets throughout the day. After hot drinks and biscuits, we all headed back to burn some calories in a Pilates session, hosted by Sian Williams. This was chair-based exercises specifically for patients with AKU and was very popular. 
 
After this session, we had a long lunch break with some fantastic food. This gave everyone the chance to have long conversations and catch up with each other. More raffle tickets were bought, and we had our traditional group photo. We had an exciting presentation afterwards, Colin McClure son of an AKU patient, had walked 40 miles from Keswick to Barrow, he raised £505 for the AKU Society! 
 


Our interactive session was next, we talked in groups about the idea of an AKU Health Passport and discussed with patients on what they would like in the passport. Professor Ranganath then arrived and presented some much anticipated SONIA 2 updates and patients given opportunities to ask questions on how the clinical trials went.
 
Our final tea and coffee break then came around with the cutting of the Garrod Day Celebration cake and raffle draw. We had these prizes on offer:
 
A ZSL London Zoo bag - full of animal-themed goodies!
A comfy quilt from Nomads
An AKU Society teddy bear donated by one of our patients
The Anthony Horowitz 'The Diamond Brothers' Bookset from Cambridge International Book Centre
Two M&S shopping vouchers donated by Amanda 
La Trafilata Spaghetti Nero Di Seppia from Limoncello Deli 
A Glenryck Apron and tea towel set from La Doria
A bakery hamper from Rough Hand Made in Liverpool
Cambridge escape room voucher for up to 6 people from Lockhouse Escape Games
A beautiful sketch by SuJin Kwak donated by Cambridge Contemporary Art
Cambridge Cookery book donated by Dulcedo Patisserie
Literature themed tote bags donated by Cambridge University Press Bookshop
Wok&Go food vouchers
A magnificent chocolate hamper donated by Lesley
 
A great list! We had some happy people walk away with these fabulous prizes. Overall, we raised £152 on the day, through selling AKU Society Christmas cards and raffle tickets.
 
After the celebration cake was eaten, we had our final session from Hannah Shephard and Gabor Barton, who lead the Clinical Gait Analysis patients have when they attend the National AKU Centre. Their presentation was on “The ‘Devolution of Sitting” and discussed how shortened hip muscles affect walking. Finally, our CEO, Nick Sireau, closed the workshop and thanked everyone for coming. We also launched our RCNi online eLearning module – designed to teach nurses about AKU and how to diagnose it. Stay tuned for a blog about this soon. 



Two Visual Thinkers acted as our graphic scribes, drawing beautiful artwork throughout the day of the workshop. Be sure to keep an eye out on our social media for the digital version of their artwork. 
 
The AKU Society and patients enjoyed this workshop immensely, and it was an excellent opportunity for patients to get together, learn more about AKU and celebrate Garrod Day. Next year we will be holding our international patient workshop in Liverpool, please contact Lesley, lesley@akusociety.org if you want more information on this.
 
A big thank you to our supporters and everyone who donated prizes to the raffle. We look forward to seeing everyone again soon!






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