Our 2018 Patient Day took place at Manchester Science Museum. Around 60 families and patients with Inherited Metabolic Disorders gathered to meet each other; hear about our new support services; and explore the incredible Manchester Science Museum! After picking up their name badges, goodie bags and fuelling up on tea and coffee, our Patient Day was off to a start!
Joanne, Team Metabolic’s Acting Chief Executive, opened the day and introduced Team Metabolic to everyone! Our team has grown from 5 members of staff to 11 over the past 12 months! So, there were lots of new faces to introduce!
The morning’s talks started rather emotionally with the lovely Tanya Brindle, who shared her daughter’s, Paige, story. Paige is bravely living with Congenital Adrenal Hyperplasia Salt-Wasting Disease (CAH). Diagnosed as a baby, Tanya explained the struggles of raising a child with a rare condition and how the support given by Metabolic Support UK had been invaluable to her along her journey. Being incredibly appreciative of the support given by Metabolic Support UK and similar organisations, she felt the need to give back to those organisations, explaining her drive to fundraise and raise awareness.
Following this inspiring talk, a focus group was held. This was to gather your opinions on accessing medicines and support from your GPs and District Hospitals. From the discussions, it was clear there was a gross inequality amongst patients and families across the country and how easily they could access treatments and care. Feedback from this session is invaluable to the Metabolic Support UK team and will inform our future strategies, in terms of where to provide support and what support is needed.
After a busy morning, lunch was much needed, with low-protein options also on the menu! Patients and families had the opportunity to mingle with each other and the Metabolic Support UK team were always on hand to answer any questions. Representatives from Nutricia, a leading low-protein nutrition company, and Over The Wall, an activity and holiday provider for children and families with additional needs, were there to offer support to patients and families from a nutrition and leisure point of view.
The afternoon consisted of workshops, including a peer support workshop led by Team Metabolic’s Jess and Rachel, who gave some tips on how to become a peer supporter. This workshop was then followed by a presentation led by the amazing Ali Hardy, Mum to a daughter with Hyperornithinemia-Hyperammonemia-Homocitrullinuria (HHH) and former headteacher, who shared her own story and provided advice on applying for school places, for children with additional needs.
Thanks also goes to Vicki from the Citizen’s Advice Bureau (CAB), who gave a very informative talk on benefits, including tips and tricks on how to ensure your application isn’t declined. This was then followed by Rashda, who very emotively and kindly shared her story.
During the afternoon, kids got to meet our new Metabolic Monster friends by joining us for our story hour and having the opportunity to draw their own Metabolic Monsters! If you want to hear more about this project, please contact Jess on firstname.lastname@example.org
The day was an amazing opportunity for patients and families to meet each other and for Team Metabolic to share advice on the support services available to patients and families. We hope everyone who attended the day enjoyed it as much as we did, and that you all had a fab time at the museum! We can’t wait to see you all again!
If you have any photos of the Patient Day, we would love to see them! Please can you forward your photos to Maggie on email@example.com