Table 3 Experiences of diagnosis

Age at diagnosis (n = 732)

 0–17 years

127

17.4

 18 years or more

605

82.6

Time to diagnosis (n = 718)

 <3 months

181

25.2

 3–12 months

169

23.5

 1–5 years

153

21.2

 5–10 years

147

20.5

 >20 years

68

9.5

Number of doctors seen to get a confirmed diagnosis (n = 735)

 1–2

248

33.7

 3–5

275

37.4

 6–10

122

16.6

 11 or more

90

12.2

Incorrect diagnosis (n = 737)

 At least one incorrect diagnosis

338

45.9

 No incorrect diagnosis

360

48.8

 Unsure

39

5.3

Information on condition received (n = 742)

 Received no information

141

19.0

 Received some information but not enough

394

53.1

 Received enough information

192

25.9

 Unsure

15

2.0