At Metabolic Support UK, we offer a programme tailored to young people aged 12-18, who are living with an Inherited Metabolic Disorder, called NextGen.
The aim of NextGen is to provide young people living with Inherited Metabolic Disorders with tailored tools to successfully manage their condition and treatment, as well an inclusive, informative, and supportive community, to share experiences and create influence.
If you’re aged 19-25, we would still love you to get involved in our NextGen programme but as a Delegate!
What part can Delegates play in NextGen?
It’s our belief that NextGen can only be effective as long as it is based on genuine, honest, feedback and views of young people living with Inherited Metabolic Disorders. As such, it’s a core principle of the programme that we seek out and listen to a wide variety of viewpoints in this area. That is where our Delegates can play a part. While this isn’t a formal role, we recognise that as young adults who have grown up with these conditions and have now transitioned into adult care and adult life, you’ve been there and you’ve done it – and that’s why your insight is so valuable in helping us understand and identify what young people need.
How can Delegates be involved in NextGen?
Community: We’d like to create a fun, informal, community where young people have a safe space to come together and socialise, as well as share their experiences. This will mainly take place on our social media accounts and we’d like our Delegates to be a part of the community and these conversations, to provide a fresh and different perspective.
For those who don’t use Facebook or social media, we’ll provide a regular email newsletter, which will include a summary of the best content and discussions, and any updates or developments. So, no one is left out. The programme now also has a dedicated space in our magazine, ‘Metabolic Matters’, which members of our “Friendship” scheme can receive, and we will also be inviting members of the community to contribute to issues as guest editors.
Your Views: Part of the work we do at Metabolic Support UK is to advocate for the needs of patients of Inherited Metabolic Disorders in the development of treatment and services, and this is something we would like to extend to the unique needs of young people. As such, from time to time we’ll be asking the community for your views on the information and services you receive. As a Delegate, we believe you will also have more experience and hindsight to offer. So, we may also invite you to take part in specific and more detailed research.
Events: We will be incorporating events and activities for our NextGen community into our existing patient days and conferences and, as we develop, we will also look to provide separate events. We will use input from our community as well as parents and carers to understand what types of events you want to see.
Who is running the programme?
My name is Sally Hatton and I will be co-ordinating the NextGen programme under the management of the Core Services branch of Metabolic Support UK. I’m 27 and also a patient of an Inherited Metabolic Disorder called XLH (X-linked Hypophosphatemia), which I hope gives me some insight into the challenges of growing up with a rare condition.
If you would like to talk further about the programme or have any questions or concerns, please feel free to contact me at any point on firstname.lastname@example.org or 0845 241 2173 (Mon-Fri, 09:00 – 17:00).
A downloadable version of this page is available here: NextGen – Information for Delegates
Sign-up here to become a Delegate today! https://goo.gl/forms/Wk5ZwZq8fhxqfu232