At Metabolic Support UK, we make it our mission to raise as much awareness as possible of Inherited Metabolic 
Disorders amongst the public and healthcare professionals. Recently, Team Metabolic’s Jess and Julie went to Northern General Hospital in Sheffield to learn about their Patients as Educators project, as Jess explains more about.
“On 20th August 2019, Julie and I had the pleasure of attending a meeting with the Patients as Educators team at the Northern General Hospital in Sheffield. We met with Emma Hudson, Patients as Educators Administrator, and Martin Hague, the Patients as Educators Clinical Skills Manager. Emma, Martin and the team were very welcoming and keen to learn more about Metabolic Support UK, the patients and families we support and how we can work together.
The Patients as Educators Programme was developed in 2004 to provide students studying medical, nursing, dental and orthoptics degrees with the opportunity to meet and learn from real patients about how their condition affects them. Patients can get involved in a number of ways, such as speaking to students about their condition and experiences; undergoing a basic physical examination where students do simple physical examinations under the supervision of a clinical tutor and a final clinical assessment; partaking in a mixture of patient history and physical examinations. Volunteers, who do not have any medical conditions, are also welcomed onto the programme, to help develop students’ communication and consultation skills.
A few months prior to the meeting, Julie and I were reviewing how we could raise awareness of Inherited Metabolic Disorders amongst trainee nurses and doctors. Following a bit of research, Julie contacted Emma and Martin and asked if we could arrange a meeting to learn more about the work they do and how we could work together. It also helped that Julie’s godmother has worked closely with the team and highly recommended them.
The Patients as Educators team provide a vital resource for trainee doctors and nurses and recognise the value of sharing patient experiences and stories with students, to enhance and improve their curriculum and learning. Martin advised that patient stories and interviews tend to have a greater impact on students whilst they are learning, as they can hear first-hand the trials and tribulations patients and families face from diagnosis onwards. Patients as Educators also facilitate a carers module, so medical students can learn first-hand what it’s like to care for someone.
Julie and I were interested to learn about the most recent transgender project the team have been working on and the innovative ways the team use real life patient stories to educate and train medical students. Martin and Emma were also fascinated to learn all about Inherited Metabolic Disorders and the work of Metabolic Support UK, and it soon became apparent there was a great opportunity for us to do some collaborative working.
Our initial agreements are still in the planning process and may change but we are very excited to have gained this opportunity to work with such a brilliant team. Over the next few months, we will be contacting our patient community to inform them about the opportunities available and hopefully conducting some interviews in the Patients as Educators filming studio!
This opportunity will allow us to raise further awareness of Inherited Metabolic Disorders, in the hope that the next generation of medical students will be able to recognise the signs and symptoms of Inherited Metabolic Disorders and make quicker and more accurate diagnoses.
We are very much looking forward to the next 12 months and working with Martin, Emma and the Patient as Educators team in Sheffield.”
If you would like to learn more about this project or how you can get involved in helping us raise awareness through the Patients as Educators project, please contact Jess on jess@metabolicsupportuk.org or 0845 241 2173.
Musgrove Park Hospital in Somerset to Guys St Thomas’ Hospital in London by the Children Acute Transport Service (CATS) team. It was a very distressing time for the whole family and we were told to prepare ourselves for the worst, as they honestly didn’t think Tayla was going to pull through. We were there for 3 weeks until one doctor came on duty and ran some tests for a Urea Cycle Disorder, and that’s when we were given the news that she had 
Tayla even decided she wanted to go as the word medication for World Book Day, so she could show all her friends exactly what she needs to keep her liver working properly.”
community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising.
Our 
marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
“There’s no doubt, I was born to be a runner. I enjoy it. I like the thrill of getting out with the dogs in the crisp winter air, feeling invigorated as I pilot new running routes around the Cotswolds. The only thing, which really frustrates me, is when my Garmin has no signal, causing me to jump frantically up and down like a frog on a lily pad, so I don’t lose momentum. Yes, admittedly, I am now one of those people, who I used to look at and despise. This was usually from the confines of a pub, watching the vibrant streak of lyrca whizz pass the window
marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
Who 
of London for the London Marathon! We are always in awe of our incredible marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
community together to fundraise for Metabolic Support UK and to celebrate the life of Anna, their daughter, who very sadly died of GM1 Gangliosidosis, aged 1. They organised a classical concert music, which proved to be a huge success, as Sarah, Anna’s Mum, explains.
The concert was a rip-roaring success both from the turnout and from the feedback given on the night and since the concert. With family and friends spread far and wide, we knew not all would be able to come. So, alongside the concert, we also ran a Just Giving page to provide an opportunity for some of them to contribute. This was a brilliant idea! We raised £660 through our Just Giving page alone! With the money raised on the night and other donations received, we have raised a staggering £3,018.22! As a family, we couldn’t be prouder of this achievement and all for a cause so close to our hearts.
5. Do you have a favourite running route?
of London for the London Marathon! We are always in awe of our incredible London Marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
We hope your training continues to go well Mike!
2. Raise Awareness
Connecting People
