When Your Rheum tackled the hearty dragon

cardiff-welsh-dragon-large-shield-embroidered-patch-a076-36708-pIn the planning of our autumn Your Rheum meeting, visiting Wales was at the top of our location list, as Your Rheum hasn’t been there before. So, on Saturday 9th November we made it to Cardiff!!

Kat and I arrived at midday, in a dry but cold Cardiff city centre and made our way to the Versus Arthritis office, who were kindly hosting us for the afternoon. We met Sharyn who is a Versus Arthritis family and young person coordinator and set up ready to start the meeting around 1pm.

This meeting was extra special, not just because we were in lovely Wales, but because we were celebrating Your Rheum’s 3rd birthday!! (that’s right, we’ve been around for 3 whole years) and to help us celebrate we had plenty of birthday treats including Colin the caterpillar cake (see picture of a very happy me holding Colin.)

YR mtg Nov 2019 4

Morgan and Lilly arrived, we sat down with a good brew and all got to know one another (including Lilly’s lovely mum Donna.) Poor Vic, our researcher/physiotherapist for the day, finally made it to us – she fought through the bad weather and UK public transport. Lilly’s mum went off to do some retail therapy and then we were all ready to get started.

Vic who is a physiotherapist in Newcastle by day and a researcher by night, explained to us a couple of projects herself and colleagues up and down the country are working on. In a nutshell, she was interested in what children and young people living with rheumatic conditions, consider to be important to them (both day-to-day and throughout their lives so far.) For example, being able to move or play sports, having energy and feeling less fatigued, talking/making new friends. The list is endless! These types of things are also known as outcomes. Vic is particularly interested in these outcomes as they will help health professionals like herself monitor and examine things important to children and young people she sees in clinic. The idea being, once you know what you should be looking at, you can monitor improvements or declines and treat when needed. This information will also hopefully help other health professionals and researchers in the future, to improve treatments and services.

Vic brought with her a large piece of paper which we could all scribble or draw on, to share our ideas. We also used magazines to cut out images to support our thinking. We did this activity as a small group with lots of chatting to work through our thoughts. As always, we made sure everyone had a break with snacks and of course enjoyed a slice of Colin.

Here are some photos of us doing the activity. For those of you who want a sneak peak of what the group said are important outcomes to them, they included: hobbies such as dancing and wheelchair sports; walking and playing with pets; making friends and socialising and communicating experiences of pain. Physiotherapists such as Vic can assess these outcomes by using things such as questionnaires or talking to the young person when in clinic or, using a pain 0-10 line which is more meaningful to patients, (for example, 3 means pain but not as painful as yesterday or my kind of level 10 pain.) It’s also important to give examples or scenarios of pain opposed to just using numbers 0-10.

YR mtg Nov 2019 3 new

YR mtg Nov 2019 5

Everyone seemed to enjoy this group activity because it gave the opportunity to zoom in and out of life, as Morgan nicely put it. Lilly also highlighted that it’s a good way to see an overview of you and reflect. With a few more prompts at the start of the activity, Vic has herself a creative way to engage and talk to young people about what is important to them.

It was a great and productive meeting, working with lovely people (as always). Thank you to all who made it happen and to Kat, who isn’t in a photo but was definitely there. 🙂

Till next time Wales!

Written by Laura Lunt ( Your Rheum Coordinator & Facilitator)

Involving young people in decision-making about their long-term conditions: What nurses need to know

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Hey everyone!!

Niamh Adams (a fellow member of Your Rheum), wrote a fantastic blog for BMJ Evidence-Based Nursing. which you can read here. In the article Niamh highlights why it’s essential health professionals involve young people in decisions about their health and healthcare.

Niamh also has her own blog site, can be found here – which you might find useful, insightful and inspirational – we certainly did!!!

Your Rheum team

***Get in touch with the Your Rheum team if you want to write a blog for the website. your.rheum@manchester.ac.uk***

My first Your Rheum meeting

Imogen, 18, was diagnosed with Juvenile idiopathic arthritis (JIA) at age 8. Here she tells her story of how she found out about Your Rheum and shares her experience at her first group meeting.

How I found Your Rheum

I joined Your Rheum in November 2017 after finding out about it from CAPS (Childhood Arthritis Prospective Study). I am a CAPS participant and they send me study questionnaires regularly. Some questionnaires in CAPS ask about my future plans. I wrote about my A-level studies and my EPQ (Extended Project Qualification), which was about rheumatoid arthritis and the treatments available to patients with the condition. In these questionnaires I also expressed my personal interest in the condition, due to my ongoing struggle with more regular arthritis flare ups in new joints. To my surprise, the study coordinator for CAPS sent me an email offering some help with my dissertation and also informing me about Your Rheum. I was linked through to the website where I filled out an application form and sent it to a lovely lady who I later learned was called Katharine. From here I was sent an induction pack via email and invited to join the Facebook group. Initially I was a little worried that my condition being classified as JIA, was going to set me apart from other young people with different diagnosis of rheumatoid arthritis. However, the group is so inclusive and open to anyone with a rheumatic condition.

My first meeting

Almost immediately after joining, I was invited to a Your Rheum meeting in Sheffield on a Saturday afternoon, in a conference room at Sheffield Hallam University. The cost of public transport was an immediate concern to me but as I kept reading the email, Katharine explained that my train tickets would be paid for! As well as this I was offered a LoveToShop voucher (which I may or may not have ACCIDENTALLY spent in Sheffield that same day!). I found Your Rheum to be a friendly and warm group of other individuals with stories similar to mine.

Before the meeting started properly, we were all introduced to each other and the Your Rheum team and ate some buffet food which was all laid out for us. The whole atmosphere at the meeting was very informal and I felt very free to leave, which really made me feel comfortable, since I struggle a lot with the anxiety of being trapped in formal situations. We were introduced to two researchers/consultant rheumatologists, Dan and Rachel, (Rachel is also chair of BANNAR (Barbara Ansell National Network for Adolescent Rheumatology), an organisation that I later learnt funds Your Rheum).

During the meeting we talked about two research projects, the first one was about psychosocial factors and transition. Dan explained the research proposal and asked us what we thought of it – such as, is it important to research psychosocial factors, what do you think of the study design e.g. how often we send out questionnaires, or conduct interviews and do the questions make sense. We also talked about our own experiences with transitioning from child to adult rheumatology services and how we felt during the move. It was incredibly interesting to hear how my encounter contrasted with how easy other people found the switch and it made me realise just how much support services across the UK differ and what is available. The second topic we covered was about how we could treat JIA more effectively using a different system of treatments. This proposed study was especially helpful for my EPQ and allowed me to gain insight into all the hard work that goes into proposing a study.

My trip to Sheffield was very informative and also resulted in me falling in love with the city and picking it as one of my choices for when I go to university to study Biomedical Science in September of this year.

I’ve been a member of Your Rheum for over half a year now and I enjoy voicing my opinions on research proposals and helping with the design of promotion posters for Your Rheum. I’m looking forward to the next meeting which will hopefully be soon!

 

How research can give patients a voice

Eilean MacDonald Eilean MacDonaldwas diagnosed with childhood arthritis when she was only a baby. 18 years on, as well as dealing with normal teenage life and managing her condition, she’s helping MRC researchers on a stratified medicine study to pick the right treatment, first time, for future patients.   

It all started when I was 18 months old and I bumped my knee. My parents noticed that the swelling wouldn’t go down, and took me to our local hospital. They ran tests but the doctors couldn’t figure out what was wrong, so I was referred to the rheumatology department at Alder Hey children’s hospital, where I was diagnosed with Juvenile Idiopathic Arthritis (JIA).

At first I was lucky. An ibuprofen derivative helped reduce the swelling, and shortly after I didn’t need any medication at all. But in in my late primary school years things changed. The swelling in my knee returned. New oral steroid-based drugs caused painful side effects, including mouth ulcers that made it difficult to eat and even talk – I didn’t last long on that medication. I also needed regular steroid injections into my joints under anaesthesia, for seven years.

Finding the right treatment

Eilean MacDonald

During my secondary school years, the arthritis moved to my other knee, both of my ankles, and my left thumb. I was prescribed an immunosuppressant medication called methotrexate which I took for two years. I hated it so much, and dreaded taking my weekly tablets as they made me feel so nauseous as a side effect. But for me to try other, newer medications, I had to try methotrexate first – for at least a year. For some people methotrexate works great, but unfortunately it didn’t for me and I was finally taken off it when it made me sick. After that I was put on an amazing drug called adalimumab, which works brilliantly for me.

Despite the effectiveness of adalimumab, one day in year 11 I had an awful pain in my ankle that didn’t go away. After a lot of hospital trips and scans, doctors discovered that I had no cartilage in my ankle joint and my bones had been grating together, resulting in a series of painful surgical interventions. After the surgeries didn’t work as hoped, my ankle joint fused itself together in an inadequate position, leaving me unable to walk properly.

I’ve now been on crutches for 2 years and am waiting on a full ankle replacement.

Eilean MacDonald

It’s been difficult. I have had to give up things I love and sit out of things that I desperately want to do. I miss dance so much and plan to go back when my ankle is sorted, hopefully. Having to deal with this level of pain 24/7 and the fatigue is hard, especially in my A-level years and when I’m trying to be a normal teenager.

But although there are a lot of negatives, I’ve also experienced some positive things due to JIA. It has allowed me to meet some amazing people and take part in some things other people can’t – the CLUSTER study and Your Rheum group. Your Rheum is an advisory group for young people with a rheumatology condition to have their say, and help  shape current adolescent and young adult rheumatology research in the UK.

Being more than a patient

I have the honour of being patient lead on the CLUSTER study, which is funded by the MRC. CLUSTER is a five-year project following the health trajectories of 5,000 children with JIA. The aim is to create a simple biomarker test that will lead to personalised treatment. Being patient lead has allowed me to talk to people at the frontier of research and get involved in the team as a patient representative, giving opinions and ideas. The experience and everyone I’ve met have been amazing; it’s been a wonderful opportunity.

Eilean MacDonald

For patients to have such a big involvement in projects like this is so important. You get to be a part of the future and the bigger picture. You feel like you’re not just a patient, you’re not just providing samples, you have a voice, you’re part of something much, much bigger.

How research can change lives

For the next generation of kids with childhood arthritis this research could mean they won’t have to go through what I did. They could have the right therapy handpicked for them, reducing the impact it has on their lives. If this feature was available when I was diagnosed, I could have been on the best medication for me from the beginning. I may not have had all the issues I described and could be living a different life right now. That’s not the case for me. But it could be for a kid like me. This study is changing the treatments for kids with JIA and changing their lives simultaneously.

More about CLUSTER and the MRC Stratified Medicine Initiative

CLUSTER, led by scientist at UCL and GOS Institute of Child Health, is one of four stratified medicine projects being funded by the MRC. Stratified medicine, also referred to as personalised medicine or precision medicine, is an emerging approach for disease diagnosis and treatment that considers patients’ genes, environment and lifestyle to create tailored therapies instead of a one-size-fits-all approach.

The Importance of Young People having a voice – Kelsey’s BSPAR experience

Author:Kelsey

Kelsey, 20, lives and works in Manchester and has a rheumatic condition that is yet to be diagnosed. She is a member of Your Rheum and here she talks about her experience of speaking at a medical conference on behalf of the group.

I heard about the British Society for Paediatric and Adolescent Rheumatology (BSPAR) conference through an advisory group that I am a member of called Your Rheum. The group is for people in the UK aged 11-24 years who have a diagnosed rheumatic condition, to help understand and get involved in rheumatology research that is relevant to them.

I wanted to attend the conference to voice what we wanted researchers to focus on and to encourage the researchers to involve young people in the research. After all, we are the experts.

I feel that I have learnt a lot by attending the conference and it was great to see the different companies and charities that get involved to provide support and information to young people with these conditions and their families.

The conference

At the conference, a few of the Your Rheum members and I answered questions such as, what we feel is the top priority for research, our experience of research and what we think of the care that we receive. We then had a Q&A session with some of the researchers and got the chance to ask them questions regarding how they determine what is worth researching and what isn’t, and what research is being done for the mental health aspect of the condition.

What I learnt

I feel this was useful to not only for us, as people with these conditions, but for the researchers to get an insight on how we would like to be involved and why.

Before attending the conference, I believed that researchers wouldn’t be interested in our thoughts or what we wanted to be researched. However, now that I have been to the conference, I feel that our voices were heard and that researchers actually value our input and also want us to get involved in their projects.

Looking forward

I would like the opportunity for not only Your Rheum members but for all young people with rheumatic conditions to be able to participate in research and to be a lot more informed in how our contribution to research helps.

I’d like future research to have a focus on improving young people’s quality of life.

In the first stages of diagnosis it is vital that young people get the appropriate support as it is very hard to come to terms with alone, and if there is no support it is much easier for young people to develop mental health problems in addition to the condition. This would have detrimental effects and I feel that it is so important that we all have someone to confide in at this stage, whether that is family, friends or a healthcare professional.

The importance of Scientific Conferences

In a few days time, on Tuesday 29th November, members of Your Rheum will be attending and speaking at the British Society of Paediatric and Adolescent Rheumatology (BSPAR) conference.

This is great, but has it left you wondering what the point of a conference is?

If so, read on…

I thought I would consult the font of knowledge that is Wikipedia to see what they had to say on the matter:

‘A scientific conference is a meeting of scientists of a certain research field, intended to bring them together to learn about recent developments, present new data to each other and discuss it critically, and to socialize and get to know new colleagues.’ [1]

I think this sums it up quite nicely. Conferences usually follow a programme of talks and workshops designed to keep scientists up-to-date with current research in the field.

You can have a look at the BSPAR programme here.

But where do normal everyday non-scientists fit in to all of this?

Well traditionally patients didn’t fit into it, conferences were purely for scientists.

It is now becoming more and more common however, for patients and the public to attend and get involved with conferences as the importance of making healthcare centered around patients and understanding ‘real-life’ experiences becomes more apparent for making research relevant.

A conference is a great place to make scientists and researchers aware that young people are interested and want to get involved in research. This is why it is really important that Your Rheum will be at the BSPAR conference. It will be a fantastic opportunity to make researchers aware of our group, show them why it is important that young people need to have a voice in research and also to give them the opportunity to meet the people they conduct research for.

Look out for a blog-post after the conference with all the details of how it went.

Your Rheum is born!

Hi everyone,

So we had our first meeting last month in Manchester and had a great time kicking the group off with some introductions and discussions on how we want the group to run in the future.

One thing we discussed was giving ourselves a new name so that we can be recognised easily. We had a load of suggestions including some reality tv inspired ones with ‘strictly rheum’, Rheum Factor’ and, my personal favourite, ‘Britain’s got Rheum!’. However, the winning name, as voted by the group was….drum roll please….

Your Rheum

 

So now we have a new name we need a new logo! This is my (slightly uninspiring) 10 minute creation that we have currently on our Twitter page….

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I’m sure we all agree that this can be improved! 🙂

This is a great chance to use your creative design skills to produce something that will be displayed nationally – if anyone is pursuing a creative career path, this would be a brilliant opportunity to add something to your portfolio of work.

If you would like to submit a design please email it to me by 30th November 2016, at : katharine.cresswell@manchester.ac.uk

 

 

 

What exactly is an Advisory Group?

Hi everyone,

It is two weeks until our first BANNAR YOURR Young Persons’ Advisory Group (YPAG) and I thought it would be useful to firstly introduce myself (hello!) but also explain what an advisory group is actually all about. If, like me, you hadn’t heard of the term until recently you might be left wondering what joining the group would actually involve.

So, firstly, my name is Katharine and I am one of the people setting up the YOURR Group. I work for the Public Programmes team and I’m employed by the University of Manchester.  I have only been working for the Public Programmes Team for the last couple of months and since then I have learnt loads about Public Involvement, Engagement and Advisory Groups.

Here is my quick guide on everything you need to know! 

An Advisory group is a type of activity called ‘Patient Involvement’ and so it is probably useful to start by looking at what Patient Involvement means. This picture that I grabbed from Twitter (Source @eupatientsforum) shows it quite nicely….

If you were to take part in a clinical trial by giving some blood, for example, this would be research being done to you (and we call this Participation). Patient Involvement is about conducting research WITH patients, so getting you involved in actually setting-up, running and advising on research.

So Advisory Groups are basically exactly what it says on the tin, they are groups of people, sometimes a random selection of members of the public, sometimes people with specific health conditions (like the YOURR group) that advise…on research. Groups can advise on all stages of a research project as shown in the diagram below:

Research

 

For example imagine you are a researcher who wants to do some research into how rheumatic conditions affect young people at school or college. You might start by going to an advisory group of young people with these types of conditions to ask them what topics are most important for you to research. This kind of input can help you establish a relevant research question: 

e.g. How does having a rheumatic condition affect young people’s abilities to do coursework? or Do young people with rheumatic conditions receive enough physical and psychological support in school/college? (These are just examples).

You then might want to speak to an advisory group to discuss how best to run the research project e.g. who you should speak to,  when the best times to speak with them,  what kind of questions would be good to ask – this could help create a study protocol.

Advisory Groups can help design all kinds of information sources e.g. advise on information leaflets, website or mobile apps explaining a study. You could then use these to give to your research participants so they knew exactly what the research study was all about and what they were getting involved in.

In the later stages of research projects, an advisory group might help you to interpret the data you have collected correctly, or actually help you to write your research findings up.

The types of activities advisory groups can get involved with are huge and so being part of the group will hopefully give you a wide range of experiences that allow you to input into research that means something to you (rheumatology research) as well as giving you an insight into how research is conducted.

Why are Advisory Groups Important?

There are loads of reasons but a few important ones are:

  • They ensure that the research questions being asked are relevant
  • They make research projects easier to understand for participants
  • They help to make sure data is interpreted correctly
  • They give different view points on how to conduct research
  • They ask questions researchers might not have thought about

 

If you want any further details about the group get in touch with me katharine.cresswell@manchester.ac.uk

Hopefully see you in Manchester on the 15th for our first meeting!

 

 

 

 

 

Welcome to the first National Young Persons’ Advisory Group on rheumatology!

Hello and a very warm welcome from the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR) and the Public Programmes Team, who are working in association to develop the YOURR Young Persons’ Advisory Group (YPAG) specifically for rheumatology.

We are really excited about getting the group started and helping to provide young people with the opportunity to have a national voice inputting into current adolescent and young adult rheumatology research.

The website is currently under construction and so we welcome any feedback or comments you might have. Please do take a look around and get to know what the Group is all about and how you can get involved.