Blogs

How I became a published author

Hey this is Ecem, one of the Your Rheum members.

Laura and Janet (Your Rheum organisers), at a virtual Your Rheum meeting earlier in the year, talked about an opportunity to write a piece of work for a scientific journal called BioMed Central, or BMC for short. The paper was going to be about the involvement of young people in rheumatology research. I had never been involved in something like this before, so thought I should ask about it. I emailed Laura and she explained the process behind writing papers and how it would go.

As I said, this was the first official piece of writing I had written, so it was a bit daunting – I wasn’t sure how I should even start.  Laura gave me a few prompt questions and from there on, I started to draft a long paragraph. I quickly got into it and what I wrote just came naturally. Janet and Laura really helped me make my writing sound professional and coherent.

Once I wrote my section, I also helped gather information from researchers who had worked with Your Rheum in the past. We did this so that we could also include the researchers’ perspective. I did a quick zoom meeting with a researcher and asked them some questions I came up with. It was very casual and we recorded the conversation so that we could look back on the transcript and add their quotes to the paper. The process after this then involved me reading many different drafts of the paper, giving feedback and maybe adding additional thoughts –   It’s very simple though.

I think one of the best things from being involved in this work, is the fact that I have a paper in a published journal with my name on it. It made me feel really cool being put down as an author. Another great thing to come out of this, is that I now know how these things work and the process involved. I’m sure this will be very helpful for writing papers in college/uni. Lastly, it will be great for putting down on my personal statements.

I think the only ‘bad’ thing, is how long it takes to write a paper. It can take many drafts before it’s published. This isn’t because I had to do anything more or something was wrong, it’s just about getting it right. And it’s only a bad thing, because I want to see it published ASAP! It’s an exciting thing to see…link to the publication will be shared with everyone once we have it 🙂

One tip I would give to people my age, is write honestly. I did this and it was a hit with the reviewers 😉 – they really liked my perspective as a young person. A tip for professionals writing papers with young people is, prompt questions are the biggest help ever! I don’t know how I would have started writing without this help, especially as it was my first time.

Overall, I’d go for it again if I had the opportunity!

Ecem

Heading to University – Eilean’s top tips (Re-post)

Hey readers!!

A really quick post, typing here on a very windy Friday in Feb.

Just in case you missed it, Eilean wrote a great piece for JAR about going to uni. Her article can be found here Juvenile Arthritis Research – Heading to University (jarproject.org) – so can her other article telling her her JIA story Juvenile Arthritis Research – Eilean (jarproject.org)

I’m sure many of you will find these interesting reads and perhaps share similar experiences.

Thanks Eilean for sharing and if you are inspired to write your story or anything at all, you are more than welcome to contribute to the Your Rheum blog!

Email Laura your.rheum@manchester.ac.uk

See ya!

Hidden Illness: one patient’s story

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

@raiiseuk

My Experiences as a Medical Student @ University: Challenges & Solutions

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

Have you had your normal face to face rheumatology appointment changed to a phone call or video consultation due to the COVID19 pandemic? We would like to hear from you.

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 your.rheum@manchester.ac.uk 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.

Upcoming Zoom Meeting

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 your.rheum@manchester.ac.uk, 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?

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!

 

 

 

What are your priorities for future research in rheumatology?

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