Sources of help

A Help understanding juvenile idiopathic arthritis

Arthritis Care is the largest UK-wide voluntary organisation working with and for all people with arthritis. It aims to enpower people to take control of their arthritis, their lives and their organisations. It has over 500 branches and groups, and over 66,000 supporters.

• Helpline service by telephone and letter.
  Weekdays 12 noon - 4pm on a freephone helpline (0808 800 4050)
• ‘The Source’ A helpline service for young people with arthritis by telephone, letter and email.
  Freephone 0808 808 2000 Weekdays 7am - 2pm thesource@arthritiscare.org.uk
• Range of self management and personal development courses for people with arthritis of all ages to enable them to be in control of their arthritis
• Four hotels in the UK
• A range of helpful publications including a bi-monthly magazine ‘Arthritis News’
• Campaign for greater awareness of the needs of all people with arthritis

Arthritis Research Campaign, fourth largest medical charity in the U.K. concerned with raising funds for research into causes and treatment of arthritis and improving rheumatology services. Produces regular informative magazine ‘Arthritis Today’ which uses jargon free language to report current treatment issues, research findings and the experiences of people with arthritis. ARC produces wide variety of free practical educational booklets about different aspect of arthritis, including ‘When your child has arthritis’ (a basic introduction) ‘Arthritis in Teenagers’ (for 13-20 year olds), and fact sheets about different specific medicines, and roles of different professions in rheumatology.

Children’s Chronic Arthritis Association is a charity that campaigns to raise awareness of childhood arthritis and supports families. CCAA provides highly commended annual family education weekends that combine learning more about arthritis, getting peer support and having fun. Network of regional telephone help for parents by parents, and publishes interesting but sometimes infrequent newsletter. New projects including facilitating computing support for children. Executive committee has representation from clinical providers and parents facilitating two-way sharing of knowledge and ideas.

CHAT (Children Have Arthritis Too) Alliance was an informal collaborative effort (now dissolved) by Arthritis Care, Children’s Chronic Arthritis Association, and The Lady Hoare Trust. ‘CHAT 2 parents – Arthritis in Teenagers’ ‘CHAT 2 Teachers’ can still be requested from Arthritis Care and CCAA.

Kids with Arthritis is a parent lead registered charity aiming to equip and support families of children with arthritis. Working to provide advice, research based information and support and enable enhanced access to health, education, community and social care services.

Produces free comprehensive handbook for families and training for service providers. Delivers regular workshops for families in Sussex. Emphasis on representing the families’ perspective.

Website has 9 articles and 40 factsheets that can be downloaded.

If you see new website by kids for kids (4 -14) www.kidsunlimited.info

The Lady Hoare Trust

The Lady Hoare Trust has merged with Contact-a-Family. See Contact-a-Family entry.

National Rheumatoid Arthritis Society –a new site and organisation lead by Ailsa Bosworth who has had arthritis for many years. Website has a page about experiences of juvenile idiopathic arthritis. Active campaigning and support organisation for people with arthritis.

Pain Society produces a free information booklet for adults who live with chronic pain. Information can help parents understand their child’s experience of pain better.

SKIP – Reflex Sympathetic Dystrophy Supporting Kids in Pain.