Award Badges

EFFORT

Life with JIA isn’t always about being positive or brave. Sometimes it is just about keeping on going, turning up to the appointments even though you would rather not, having the injection even though it is a battle every week, trying to have your blood test even if when it comes to it, you don’t manage this time.

Does your child struggle to get up for school but has finally been on time this week? Have they agreed to give injections another try even though it was hard last time?

Did they eventually agree to go to their appointment even though they really did not want to? Did they miss out on a school attendance award despite attending school at every opportunity they could?

Did they find a new way of doing something to make things easier for them? Have they made a move to be more independent in dealing with their condition?

COURAGE

No two children with JIA are the same and yet they all show courage in their different experiences with JIA. They often don’t have a choice about a lot of what happens to them so it takes real courage to give things a go or a second try.

Have they agreed to try a new medication or a new way of having their existing medication? Are they trying a blood test or an injection with no magic cream? Did they just try a first joint injection using gas and air? Did they have a bad experience last time and go back for a second go?

Did they manage talk to you or someone else when things were getting tough? Did they feel scared and still have to do whatever was scaring them? Are they having a rough patch?

Did they ask for help? Were they honest with their team about how things are going?

FUNDRAISING

We doubt this needs much explanation! We know so many of our families are amazing CCAA fundraisers so we know this one will be popular! And we want to help reward children and young people for getting involved in CCAA fundraising as it can be a positive way to approach living with their condition, it can help to raise awareness at the same time and it can make a difference to the lives of others with JIA.

Has your child or young person come up with a fundraising idea for CCAA? Have they done a special challenge or completed something particular?

Have they led on a CCAA fundraiser or suggested one to school? Have they got on board with one that you have planned despite some reservations?

RAISING AWARENESS

We know that many young people do an amazing job in raising awareness of JIA and challenging the idea that arthritis is just for old people! This might be done on a grand stage or just in a one-to-one conversation – the way it is done doesn’t matter, what is important is that every time we do this we make a difference.

Has the child or young person given a talk to the school/college in assembly or at Scouts/Brownies/Guides/Woodcraft folk or another social group about any aspect of JIA?

Have they shared about their condition with a friend/s? Have they raised the issue of their condition in a discussion? Have they included JIA in school-work of any kind? Have they challenged the views of others around arthritis in discussion?

SUPPORTIVE SIBLING

There will be many siblings who support their brother or sister throughout their life with JIA or at certain points. Sometimes it will be difficult for them – they may feel left out or jealous. Maybe an award might help let them know that you see it can be hard.

Is there a sibling who has had to attend all the hospital appointments? Have they got involved on injection night? Do they join in with physio?

Do they deliberately stay out of the way just knowing it is the best thing to do? Do they always get left with a friend, neighbour or relative? Do they have to compromise on things in their daily life due to their sibling having JIA? Have they had to witness difficult times at home?

ACTIVE ACHIEVEMENT

Children with JIA often achieve things physically which for them are HUGE but would not be recognised elsewhere; equally many try very hard to keep up with their peers and sometimes don’t manage to but they are determined to keep at it nonetheless.

Is there something they have worked hard for physically despite all that is against them? Did they persevere with gym/swim/karate/ballet class despite facing extra challenges.  Have they finally managed to ditch the stabilisers?

Have they tried their best to take part in a sporting event? Did they not get an official award but you saw how much they had improved? Did they get a special mention by their coach and deserve a special reward to mark the occasion?

RESEARCH

At CCAA we know how important research is to the families we support. Without research, our children and young people would not have access to all the new treatments that make such a difference to their lives like biologic drugs. We know our families are often asked about research and like to get involved, so we think this definitely deserves rewarding as it makes a real difference to the lives of others and all those yet to be diagnosed.

Has your child agreed to help with some JIA or Uveitis related research via their hospital team? Did they contribute their ideas about their treatment via a survey? Are they part of the group ‘Your Rheum’?  Are they part of a clinical trial which involves extra appointments?

(NB if you or your child/young person would like to get involved in research but don’t know where to start please get in touch and we can introduce you!)

Next Steps

We were asked by Health Professionals to create a badge for those children and young people moving on from paediatric care to adolescent or adult care services. But we recognised that there are other milestones along the journey that also merit special recognition. Growing up with JIA can involve lots of moments where you have to change direction or strategy or where you need a new plan and this is the badge for all those moments!

This one is hopefully self-explanatory! Is your child or young person moving from paediatric care to adolescent/adult care or from one hospital to another? Does your child need a change of medication or to restart an old medication again after a break? Has your child started to manage their medication more independently – maybe self-injecting or managing tablets and schedules? Are you in a situation where your child’s JIA care is being changed due to a house move? Perhaps your child is changing to a new form of medication eg oral medication to injected or vice versa. Does your child have a new treatment plan, a new physio plan, a new OT plan, a new play therapy strategy that they are committing to? Is your child about to start some new psychological support sessions? You get the idea so feel free to use this badge to mark, celebrate or encourage whatever ‘next steps’ your child is facing.

MEDALS

Once your child or young person has filled all the spaces on their lanyard, please email awards@ccaa.org.uk and we will be delighted to send them a special medal to hang on the bottom of the full lanyard.

They can then receive another lanyard with their next badge to continue collecting.