Living with Juvenile Idiopathic Arthritis (JIA)

Children with JIA can be encouraged to take control of their situation and make friends too.

Empowerment is about people having control over their own lives. It means parents having greater control than perhaps they did in the past. Empowerment is also about information, If you have the information you need, then you are empowered. For instance, equal partnerships can be empowering. So often, it is all too easy to see others as telling you what to do but an equal partnership, for instance with medical and other professionals, is empowering. It gives you the power to do things yourself, to be in control.

Children can be empowered too. You can do this by helping them to see themselves not as ill children all of the time even though they do have problems with arthritis. You can encourage them to manage their own exercise programmes for example, and help them to understand they are only patients when at a medical session and not when at home, at school or playing with friends.

There will be a whole range of questions to be asked if you want to be in control, along the lines of ‘how do we find help?, ‘who will help us?’, ‘how do we know what we need?’ and ‘how can we help ourselves?’ We may need to find someone who will work alongside us while we sort out the many practical and emotional challenges which JIA brings, particularly at the point of diagnosis. There are other agencies who may have a duty to help — you may need to find out who they are and what they can do.

Ask around, find out what is available, like your local Citizens Advice Bureau (see phonebook). It helps to find someone who can support you through the maze, who can perhaps help with suggestions about who to contact and what you could say to them. You may want help with practicalities such as drafting letters which you can then send off yourself or which could be typed up so all you need do is to sign them. Find someone who can be a friend, who knows the ropes, perhaps someone who has been there themselves and knows what it feels like.

We all need encouragement to make the effort to try out different ways of approaching problems with the various authorities and other organisations concerned. Sometimes it is a help to rehearse with someone else in advance what you are going to say.

Linking up with others who share your concerns is important. Those linked together by a common cause are often stronger as they can present a united front.

In talking through problems, it helps to identify the major issues. If one gets too involved in trivial matters, these can detract from the major issues. It is often better to concentrate on the important things. This avoids the feeling that we are always in conflict with ‘authority’ in some way. A reputation for conflict often means that people cease listening to what we have to say.

Useful practical advice includes:

  • Keep all the letters you receive on any issue (with date of receipt).
  • Keep copies of all the letters you send (with date sent).
  • Keep notes with a record of the date, of all phone and other conversations. Note who you spoke to, and what was said.
  • Insist on replies in writing.
  • Ask for written confirmation of telephone calls or what someone has said in a meeting with you.

You may also need to contact your:

  • Social services department about respite care or equipment and adaptations.
  • Health authority for specialist advice or advice from physio and occupational therapists.
  • Housing department about adaptations, improvements to council property, council tax discounts.
  • Education department on special school provision, statementing, specialist services available.
  • Benefits Agency helpline or local Department of Social Security.
  • Other voluntary agencies about support or financial help.

Sometimes your local Social Services Department will provide a booklet for people with special needs. Contact your local office to see if they can help.

For further information on benefit entitlement, and on independent living see Disability Benefits

Other support services include:

For the address and telephone number of your nearest Advocacy Centre and Citizens Advice Bureau contact your local council.


Written by: Dr C. Pilkington, Consultant Rheumatologist, Great Ormond Street Hospital,  London

The CCAA is a registered charity (No. 1004200) run by parents and professionals

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Patron: Prof. P Woo PHD. FRCP. FRCPCH
Patron: Prof. T Southwood BM. BS. FRCAP. FRDP. FRECPCH.
Patron: Dr N Hasson MB, ChB, FRCPCH.