Living with JIA can be a confusing and worrying time for your child and for you as a parent or carer. The resources and links we have acquired below, aim to give you some clarity and comfort. We continuously add to these resources and information links to help support you and your child in their JIA journey. If you have any specific area that you cannot find support in, please do not hesitate to get in touch with us and we will help direct you. Also, this will help us to add to our resources for others.
Education Resources
For the JIA specific individual healthcare plan or IHP – fully downloadable template full of tips and ideas to help the school support your child.
Healthcare template: Individual Healthcare Plan
Healthcare template in Welsh: Cynllun Iechyd Unigol (CIU)
Web link to further information: Individual Healthcare information
Supports parents with issues around attendance and attendance rewards. It explains the legal facts and has suggestions of how to talk to schools about these issues.
Factsheet: Advice Factsheet for attendance
Web: www.ipsea.org.uk
NASEN is a charitable membership organisation that supports all education practitioners by providing relevant Continuing Professional Development (CPD), resources, advice, information and much more to enable staff to meet the needs of all pupils including pupils with learning differences.
Web: www.nasen.org.uk
Tel: 01827 311 500
Email: welcome@nasen.org.uk
The music exam board, ABRSM, lists arthritis as a condition to allow for extra time in exams.
Downloadable leaflet about JIA for teachers (Created by Researchers at University of Bath)
Resources for Parents & Carers
Find your nearest local support group/s from our network of friendly community groups across England and Wales.
Click here to find your local support group.
CLUSTER brings together knowledge, data and studies from internationally recognised leaders in childhood arthritis, JIA-uveitis, bioinformatics and industry, along with insight from our UK-wide patient and parent network for a common goal.
UK wide Facebook support group for parents/carers with thousands of members.
Facebook group: link to Parent Facebook group
Please Note: This Facebook group is not run by CCAA or associated with CCAA. We cannot be held responsible for any activity, advice or information shared on this group.
Facebook Page: JDM Families UK Facebook group
Information about Paediatric Rheumatology in many different languages
Web: Printo
Resources for Young Adults
Arthur’s Place is an online magazine and social network for young adults with arthritis.
Private Facebook group managed by the parents who run the ‘Parents and Families UK’ Facebook group.
Link to Facebook group: Facebook group for teens in UK.
Resources for coping with JIA life
Many children cope surprisingly well with their blood tests. If blood tests are not going well, you may want to prepare before your child starts them. We have produced a Tips & Tricks leaflet, written by parents for parents, which you can download below.
Finding the right book can be tricky, so we have created a leaflet listing some that have helped other families – each book comes with the age recommendation parents suggest, but you know your own child best, so be guided by that! Download our Tips & Tricks leaflets, written by parents for parents, about:
Finding a suitable app or web resource can be tricky when there are so many out
there. Anything on a screen is usually pretty popular with kids though, which means
that getting them to take an interest should be easy! If you take a tablet or mobile
device to your appointments, these can also help pass the time in the waiting room.
Some come with age recommendations, but you know your own child best so be
guided by that!
Download our Tips & Tricks leaflets, written by parents for parents, about:
A charity making videos of many procedures that your child may need to help children and parents prepare for hospital. They have videos of joint injections, infusions, blood tests etc.
A charity that arranges for you and your child (plus siblings!) to get their lab coats on and visit the lab where their bloods go to be processed. This can really help with children who find blood tests hard, as it helps them understand the process while having fun at the same time! (Ask your rheum team whether your hospital has Harvey’s Gang and if they can refer you! Look up #HarveysGang on social media for photos).
Clinically proven pain relief from needle pain.
Resources about Benefits
Web: Visit the Government website
The charity, CONTACT, can also help you with information regarding benefits.
Uveitis
Find some useful videos about Uveitis and Uveitis research on our dedicated webpage.
Uveitis Information
Other Charities & Resources
Arthritis UK
There is a Young People section on the Arthritis UK website. They run events and activities throughout the UK for young people and their families, visit their website where you can find out more about the events they run for Young People.
Scottish Network for Arthritis in Children (SNAC)
The aim of SNAC is to provide a national support network for children with arthritis and their families through the provision of factual, practical and emotional support. It aims to pull together the wider community of affected children in Scotland as well as raise public awareness of childhood arthritis.
Irish Children’s Arthritis Network (iCan)
Like CCAA, iCAN is a volunteer-run network based in Ireland providing support, information and advocating for best care for those affected by Juvenile Arthritis. They are working towards making things better for kids with Arthritis in Ireland.
JIA at National Rheumatoid Arthritis Society (NRAS)
JIA-at-NRAS is a part of the National Rheumatoid Arthritis Society (NRAS). They aim to provide information and support for people affected by juvenile idiopathic arthritis (JIA) and rheumatoid arthritis (RA), their families, friends and carers, as well as health professionals.
Contact – for families with disabled children
Contact is a UK wide charity providing support, advice and information to any family with a disabled child, including any form of arthritis. If families need information visit the Contact’s website www.contact.org.uk