Information for Parents/Carers

At Metabolic Support UK, we offer a tailored programme for young people aged 12-18, who are living with an Inherited Metabolic Disorder, called NextGen.

Our aim with this programme is to provide young people living with Inherited Metabolic Disorders with tailored tools to successfully manage their condition and treatment, as well as providing them with an inclusive, informative and supportive community, to share experiences and create influence.

However, as a parent or carer, you are bound to have questions about what impact NextGen can have on your child and what this project entails. Please find below some answers to the more common questions we receive about our NextGen project. However, if you have any further questions about the NextGen project, please don’t hesitate to contact us. You can find Sally’s (our NextGen Project Officer) details at the bottom of this page.

Common FAQs

How will my young person be involved?
Community: We would like to create a community in which young people can come together to socialise and share their experiences. This will primarily take place on our social media accounts, including a private Facebook group, all of which will be managed and fully moderated by Metabolic Support UK.
For participants who don’t use Facebook or social media, we will provide a regular email newsletter, which will include a summary of the best content and discussions, and any updates or developments. The NextGen project now also has a dedicated space in our magazine, ‘Metabolic Matters’, which members of our “Friendship” scheme receive, and we will be inviting our young people to contribute to issues as guest editors.
Research: 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 would like to conduct research with our NextGen members, to gain their views on this work as well as to inform the resources we provide. Specific details on the information required and any data protection protocols that will be in place will be provided in each instance.
Events: We will be incorporating activities for our young people into our existing patient days and conferences and, as our community develops, 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 will have the most benefit, and all events will be subject to the required parental consent procedures.

What sort of resources will my young person be able to access?
We will be developing toolkits in the format of booklets, articles, video blogs, etc, that young people can use to help them navigate some of the challenges they might face. These will include topics such as being able to talk about their condition, managing their own treatment, support within employment and education and the transition from paediatric to adult care. The programme is not intended to be an advice service. So, these will be broad practical tools to support young people in managing their own needs and to provide general hints and tips. If a young person contacts us for more specific advice, we would signpost them to their relevant specialist or an approved organisation. All of these resources, a list of the organisations we refer to, and our contact details will also soon be available to view and access via a dedicated area of our website.

Will I have visibility of the communication that my young person receives from NextGen?
If your young person is under 16 years old, you can indicate, on the consent form, if you would like to receive copies of the general communications we produce, such as letters, emails and our magazine. This doesn’t include any of our social media posts or open discussions, which take place on comments, as these will be subject to the terms & conditions of accounts with that social network.
In the unlikely event that a young person aged 13-16 contacts us privately and/or confidentially, we will respect their rights and wishes as far as is reasonable and would not routinely disclose these communications, but we will always inform you of any cause for concern.
If your young person is aged 16 or over, it becomes their choice which information they choose to share with you. However, it remains our duty of care to inform you if we identify any cause for concern.

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 sally@metabolicsupportuk.org or 0845 241 2173 (Mon-Fri, 09:00 – 17:00).

A downloadable version of this page is available here: NextGen – Information for Parents, U16

If you would like to provide permission for your young person to become a member, please complete the registration form on the following link https://goo.gl/forms/3mT67nAwIB4qpnij1