ACROSS THE UK
We cover England and Wales but we have great links with similar groups/charities across the UK:
CHARITIES TO SUPPORT YOU:
All these have lots of information on their websites and many have booklets etc that you can request:
- CCAA (The charity with whom we are incorporated! A volunteer led charity running family support weekends and offering lots of great advice)
- Olivia’s Vision (for everything uveitis related)
- Versus Arthritis (formerly Arthritis Care and Arthritis Research UK) (events for 12-18 year olds and youth workers based in London, Manchester and Birmingham as well as advice and support)
- JIA@NRAS (family fun days in various UK locations, #wearpurpleforJIA fundraiser, great booklets available including one for schools as well as advice and support)
- Kids Like Us (Charity based at Birmingham Children’s Hospital supporting children with rheumatological conditions in the local area)
- JDRG (Juvenile Dermatomyositis Research Group) (lots of information on JDM for parents/patients and their families/teachers etc)
- What? Why? Children in Hospital (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)
- Harvey’s Gang A charity that arrange 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)
OTHER SUPPORT ONLINE
- UK wide facebook support group for parents/carers with 1800+ members Juvenile Arthritis Parents and Families UK
- Online support group for JDM families – JDM Families UK
- Arthur’s Place – a fantastic online magazine and social network for young adults with arthritis.
- Other languages: Information about Paediatric Rheumatology in many different languages
SCHOOLS – JIA Healthcare plan template and advice on attendance issues
Health Conditions In Schools Alliance http://www.medicalconditionsatschool.org.uk (for the JIA specific individual healthcare plan or IHP – fully downloadable template full of tips and ideas to help the school support your child). NB You need to scroll right down to find the JIA specific one.
NEW: there is also a useful Health Conditions in Schools Alliance fact sheet to support 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.
FURTHER HELP AND ADVICE INCLUDING HELPLINES TO CALL
CONTACT (The Charity for Families with Disabled Children) www.contact.org.uk
IPSEA (Independent Parental Special Education Advice) www.ipsea.org.uk