Your Rheum member Sophie has written a great piece of work first published in May 2020 (Archives of Disease in Childhood, an international academic journal), about her experiences of living with a hidden illness.
Sophie highlights some really important points that many young people with a health condition share, but she also reminds us that everyone is different and will have their own unique experiences.
This is a wonderful article, enabling us to listen to one young persons voice. We hope it gives other young people the inspiration to be heard, as well as reminding professionals who work with young people to listen.
Read Sophie’s full article here
Health and my JIA was a big concern with me when thinking about not just my course but all the other things that go with university.
I’m not going to sugar coat it, there are many things that I do find challenging about being a medical student whether this is long commutes to placement that usually simply add to already long days, keeping up with lectures and appointments, particularly when I don’t feel well. Yet these are things which can be overcome, often just with a bit of adaptation. For instance all of my placements are easily accessible directly by public transport which saves me from the two train and a 40 minute walk odyssey that my flatmate has to take.
There was support provided by the university, but I have not always found many of the formal forms of support to be very helpful. I have never reached out to the Med School Welfare after being coerced into a very unproductive meeting after the hospital stay in first year. I have talked with my advisor of studies who is lovely but often does not know what to suggest which isn’t always very solution focused.
I’ve found talking to my heads of year and facilitators far more helpful than any form of formal support as often, I find it is these people who can make your life a little easier. For instance, a really beneficial thing was my anatomy teacher arranging for a PhD student to meet with me once a week and go through all the parts I’d missed, something which was incredibly kind of them both and really helpful.
Equally I think that there are even some benefits to having JIA and being a medical student. For instance, I’ve found that students with disabilities are often far more able to relate to patients and their worries which can inform your practice and mean for a better patient experience. For instance, ‘fatigue’ is often glossed over in lectures as are ‘side effects’ however I’ve found that these are things which have an astronomical impact on my life, and patients lives which 100% influences how I communicate and deal with patients with such problems. I am biased but I think this is a huge positive and that we could do with more doctors with disabilities.
I really care about my course and I really enjoy it. I have never wanted health issues to be a barrier even though there are many aspects of it that I find challenging and health issues continue to influence my life. I would say though that there are very few obstacles for which a solution cannot be sought, and an adaptation cannot be made. I would not change what I am doing for the world.
Written by Beth, Your Rheum member
These are strange times we are living through and one change you are likely to notice is that you will be seen less often in the rheumatology clinic and instead either have your appointment by phone or in a video consultation. We would like to hear your opinion about this change to your care as this may be an area for future research. Is the opinion of young people different from that of their parents? We need to find out. So let us know what you think by emailing us at firstname.lastname@example.org and we can feed your opinion/ideas into the discussions and ensure your voice is heard! Be sure and let Frances know if you wish to remain anonymous or not when you email us.
If you are interested in writing a short piece about your experience for the next newsletter or a blog on the website, even better – just let Frances know.
On the 30th of July, Your Rheum will be hosting our second online “face to face” meeting via zoom! The session will run from 7:00pm until around 8:15pm. We have two researchers who are looking for young people’s insight into forming research projects, so your opinion would be greatly appreciated!!
Please let us know if you will be attending by emailing us at email@example.com, just so that we have an idea on numbers and we will email a zoom link a little closer to the time.
We look forward to seeing you then!
Interested in research into how health professionals talk with children and young people about pain?
The latest online activity is from a researcher at the University of Manchester – DR Rebecca Lee who has requested your help in writing a list of question prompts to use in future interviews with children, young people and their parents in her study considering the communication about pain between professionals and young people and their families. All you need is to download the document, have a read and a think and send Rebecca back your comments – anything missing, another way of saying something, anything you don’t understand etc. If you would be interested in taking part, please see here! You will even got a shopping voucher to say thank you for your time – for when the shops eventually open!
A key aim of Your Rheum is to ensure the voice of young people is heard at all stages of the research cycle, right from the decision making as to what research to do, right through to sharing and publicising the results . The national group which steers research within the paediatric and adolescent community in the UK – the Paediatric Rheumatology Clinical Studies Group – has set up a survey which we would encourage young people to complete so they hear what sort of topics YOU as young people want researched. What are the questions you want answered? So please, take a few minutes and ensure your voice is loud and clear and heard: https://www.surveymonkey.co.uk/r/NTD2X2J
On Friday the 29th of May, Your Rheum hosted its first online meeting via zoom. All in all it was a great success and we had over 12 participants from all over the UK!
We decided to organise this meeting, so that we could still engage young people in research and listen to their views/opinions whilst on lockdown. We talked through the current and upcoming opportunities available through Your Rheum and a bunch of external activities that young people may find useful.
One of the research team also joined us, to go into detail about their project and how exactly people could feed into developing the work.
We are currently working on trying to organize another meeting and as soon as we have decided on a date/time, an email will be sent round to members, the website will be updated and a Facebook group post will be added! If you would be interested in taking part in the next meeting, you can also email: firstname.lastname@example.org
A new online activity has just become available relating to children and young people with JIA.
It is a short survey that asks for your opinion on areas of research relating to your illness that you feel are most important and need more research.
Here is a link to the survey: https://www.surveymonkey.co.uk/r/NTD2X2J
In addition, if anyone is interested in joining Your Rheum, please email: