Frequently Asked Questions
- Who is organising the Group?
Your Rheum was established by the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR). BANNAR is funded by Versus Arthritis. However, the Group is independent of these organisations and we encourage members of Your Rheum to run the Group as much as possible (for example working with the Group Chairperson).
Your Rheum is supported by the Group Coordinator/Facilitator, Laura Lunt, a researcher at the University of Manchester. Laura acts as liaisons between researchers and the group, helping to identify projects and proposals that require the involvement of young people, and developing ways, where needed, to effectively involve young people in giving their views. Project Lead Dr Janet McDonagh also supports Your Rheum.
- Why is the Group being set-up?
The purpose of the Your Rheum is to provide a way for young people with rheumatology conditions to have a voice within rheumatology research. BANNAR worked with VOCAL to setup the group.
- Who can be part of the Group?
Young people aged between 11-24 years, living in the UK, who have been diagnosed with a rheumatology condition and are under the care of a rheumatologist.
Due to the age restrictions on social media sites, the Facebook and Twitter groups will only be available to those aged 13-24.
- What will being part of Your Rheum involve?
There are two ways to be involved in the group and members can decide to do both or just one way. The two ways are:
- Attending face-to-face meetings (usually two a year)
- Being part of the online network via Zoom meetings, the website, blog, Facebook and Twitter pages.
Group members will be given the chance to get involved in a range of activities advising rheumatology researchers on their current research. The activities will be as interactive as possible.
There will also be a chance to learn more about the research process and also to meet other young people with rheumatology conditions.
- How do I apply to be a member of Your Rheum?
All Group members need to have applied and had their application confirmed by Laura before taking part in activities, both face-to-face and online.
- I have never taken part in anything like this before/I have no experience of research- can I still take part?
Yes! We actively encourage all young people eligible to be part of the Group to take part. No research experience is necessary- just your experiences with your condition.
- How often will meetings be held?
Ideally at least twice a year – this will be discussed in the initial meeting. In between meetings there will be online involvement activities available.
- Can I just drop-in to a Face-to-Face meeting on the day?
Unfortunately there are limited spaces in the face-to-face group (up to 10) and so you must have your place confirmed by the Group Organiser before attending. If you turn up on the day without having a spot confirmed, we will not be able to cover your travel expenses or provide gift voucher compensation for your time.
The group is a national group covering England, Scotland, Northern Ireland and Wales and so we will be trying to ensure we get a coverage of different areas in the face-to-face group where possible. Therefore if there are already several people in you area signed up we will ask you to join the online group instead if you would like to.
- What happens if I want to attend the face-to-face meetings but the group is full?
You will be placed on a waiting list for the face-to-face meetings and if a spot becomes available, the Group Organisers will get in touch.
You can also become a member of the Online network via Zoom, Facebook, Twitter and the Website.
- Do I need to do anything to prepare for the meetings?
Not usually. If you did need to read or do anything before a meeting, Laura will send you this information in advance and help you with any questions that you might have. Examples of things you might read before a meeting are; a meeting agenda, project summary, glossary of key words, looking at the research project cycle.
For online activities there may be some documents to read before the activity takes place and these will be emailed or posted to you. You will be informed what each activity involves and provided with an estimate of how much time we think the activity may take (including preparation time) when you are asked if you would like to take part.
- Do I get paid for being involved in the Group?
We will compensate you for your time by offering gift vouchers per involvement activity (each activity you get involved in or any meetings you attend – meetings/ activities should not last more than 2-3 hours).
Gift vouchers will be provided at the end of each session/meeting and we will ask you to complete a form with your name, address and signature to confirm you have received the vouchers.
Certain online activities, that require a significant investment of your time will also be eligible for compensation with gift vouchers.
- Are Travel expenses covered?
We can book travel for you or, refund reasonable travel costs if you are able to provide evidence of the costs incurred e.g. a valid train, bus or car parking ticket. We can also provide costs for petrol at 40p per mile from your home address to the meeting venue.
In certain circumstances we may also be able to help with costs towards overnight accommodation. Please get in touch with the group coordinator to discuss this.
- What happens if I can’t attend the face-to-face meetings
You can discuss with Laura about the possibility of dialling into the group by phone or over Skype, however you may be restricted in the parts of the meeting you can get involved in e.g. if there are interactive activities requiring group work.
You can still be very involved in the Group though via the online network (Zoom, website, Facebook Group and Twitter)
- What are the Group rules?
We want you to feel safe and valued as part of the Group and so we have a set of Group Rules that we expect all members to abide by.
We also advise you to read our safety and privacy guidelines about being a member of the group, which includes information about reporting any concerns you have.
- How long will the Group run for/ how long can I be a member for?
Your Rheum currently has funding to run until September 2023, further funding will be sought to continue the group beyond this date.
You can be a member of the Group for as long as the group runs or until you reach the age of 25, whichever is sooner. You can also choose to leave the Group at any point, being part of the Group is completely voluntary. If you decide to leave the Group you will be removed from any private online groups to maintain the Group’s confidentiality.
- I am a parent/guardian of someone who would like to get involved in the Group, where can I get more information?
We suggest you read through this website as much of the information on here is relevant for parents/guardians as well as members. We have also developed some specific safety and privacy guidelines for member’s parents/guardians.
- I am a researcher who would like to work with the Group, how can I do this?
Visit our Information for researchers which will provide you with guidance on working with the group. You can get in contact with the Your Rheum organisers via the Contact page to discuss your requirements.