These tips seem very basic, but when you are very tired and worried it is difficult to remember things accurately. The sequence of time can also seem hazy. It can also be difficult to correctly remember what you have been told when you are upset.

• Write it down! Get a notebook or diary, it's amazing how much information you start to collect.
• Ask each professional to send you a copy of their reports, assessments or letters.
• Note the date of any telephone calls you make, noting to whom you spoke. Always be extra chatty with the receptionist/secretary because they are the gateway to the chief!
• Make copies of any letters you send and keep all letters about the child in one place.
• Making a few notes about any conversation you have with professionals can help you keep track of detail.
• Try to be specific – sort our your thoughts before you ring, and write down your questions before you go to see a professional.
• Try to be patient, no-one else is as emotionally involved as you are, but be prepared to be firm if necessary.

The loving support of a child with arthritis by her family is the most powerful resource for each child. But for many years the parents will also have been expected to give the correct medicines, closely monitor the child, and alert you if anything changes. They will be asked to carry out exercise and splinting routines and will negotiate with school teachers and many others to get the help the child needs.

Parents have the potential to provide good therapy once they have been trained. Making time and investing effort to create a mutually respectful and honest working relationship with families will harvest great reward for the child, the family and your service. At the outset of your relationship with families, please consider

• Have there been any delays or misunderstandings in the past for this family?
• What are the parents’ priorities of care?
• What have they been told about arthritis and its treatment and the child’s future?
• What do the mother and/or father (partner) understand about arthritis?
• Ask them what they are most afraid of – it may be possible to reassure them and give accurate information now. Ask them next time if they feel the same, or are they worried about something else.