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Checklist for parents at appointments

One parent's advice was "at first we could not understand why it took so long to make a diagnosis. We now understand that it is important to ask the questions we want answered and not just accept what the doctors say'.

• These people can make a huge difference to daily life and it is really worth being persistent in getting a full assessment carried out.
• Always write down the name of any therapist you visit or telephone. Be clear about for which department they work.
• This information is vital: staff change and you will need to arrange any follow-up action, therapy or help.
• Write down your questions before you leave home.
• Take someone with you to appointments - it's very difficult minding your child, remembering your questions and listening to the answers all at the same time.
• Don't be afraid to ask questions - and ask again if you are still unclear.
• Most professionals are happy to send you a copy of their correspondence but you have to ask them to do so!
• If you have particular preferences or fears about specific treatments or drugs, you must say so. The professional cannot guess what is worrying you, and will usually negotiate treatment options where possible.

…and finally

• Make sure you have dinner planned before you leave home because most parents find attending appointments absolutely exhausting!