1. www.nos.org.u k Survey 27 th June 2011

2. www.nos.org.uk Key findings Fractures For 70%, osteoporosis was not discussed by their health professional after they broke a bone and a further 8% had to mention it before it was discussed. 26% were only diagnosed after multiple fractures. 35% had to wait more than a year after breaking a bone before being diagnosed with osteoporosis and 22% had to wait more than 5 years.

3. www.nos.org.uk Key findings Diagnosis 26% felt that they could have been diagnosed sooner or were diagnosed much too late. A further 8% had to fight to get the correct diagnosis.

4. www.nos.org.uk Key findings Risk Factors Most people had easily identifiable risk factors for osteoporosis. 37% knew they were at risk. 86% did not have an assessment or discussion about their risk factors for osteoporosis prior to a diagnosis. 38% received no basic lifestyle advice for maintaining bone strength.

5. www.nos.org.uk Key findings Treatment and Care 29% felt that most or all of the treatment and care they received could be improved - an additional 45% said that some could be improved. 35% felt that their GP did not know much or needed to know more about osteoporosis.

6. www.nos.org.uk Survey Respondent Details Survey of people diagnosed with osteoporosis Collected via National Osteoporosis Society Support Groups, forum and website 704 survey completes

7. www.nos.org.uk 1.Gender

8. www.nos.org.uk 2. Geographical Distribution

9. www.nos.org.uk 2. Geographical Distribution

10. www.nos.org.uk 3. Age

11. www.nos.org.uk 3. Age

12. www.nos.org.u k Fractures

13. www.nos.org.uk Summary For 70%, osteoporosis was not discussed by their health professional after they broke a bone and a further 8% had to mention it before it was discussed. While 24% were diagnosed after one fracture, 26% were only diagnosed after multiple fractures. 35% had to wait more than a year after breaking a bone before being diagnosed with osteoporosis and 22% had to wait more than 5 years.

14. www.nos.org.uk 4. How many fractures have you had?

15. www.nos.org.uk 4. How many fractures have you had?

16. www.nos.org.uk 5. How many fractures did you have before being diagnosed with osteoporosis?

17. www.nos.org.uk 5. How many fractures did you have before being diagnosed with osteoporosis?

18. www.nos.org.uk 6. Which bones have you broken?

19. www.nos.org.uk 6. Which bones have you broken? Most common shown 242 ‘other’

20. www.nos.org.uk 6. Which bones have you broken? Specified ‘other’ responses included: –Ankles –Elbow –Leg –Feet

21. www.nos.org.uk 7. Did anyone treating your first fracture talk to you about osteoporosis?

22. www.nos.org.uk 7. Did anyone treating your first fracture talk to you about osteoporosis? Yes, when I went to hospital to have the broken bone treated they mentioned osteoporosis Yes, my GP talked about osteoporosis after I broke a bone Yes but I had to ask about it first No

23. www.nos.org.uk 7. Descriptive examples of failure to discuss osteoporosis at first fracture I was not treated for the fractures - broken ribs are not treated so I was just sent home. I had to request a bone density scan after 2 fractures. The doctor had said it was unnecessary. Then my T-score was -2.6! I had to mention osteoporosis. I had to pay for my own bone scan eventually. My GP referred me to a physio for back pain, she suggested a scan so I went back to my GP. I had an x-ray and fracture found. You should diagnose people BEFORE they fracture!!! My GP refused to get me a DEXA scan because I was only 44 yrs. I was originally told "at least you don't have osteoporosis" and that was without a scan. Back pain never examined by GP just treated with pain killers. Spinal fracture missed at hospital.

24. www.nos.org.uk 8. How long did you have to wait between your first fracture (broken bone) and getting a diagnosis of osteoporosis?

25. www.nos.org.uk 8. How long did you have to wait between your first fracture (broken bone) and getting a diagnosis of osteoporosis?

26. www.nos.org.u k Diagnosis

27. www.nos.org.uk Summary 26% felt that they could have been diagnosed sooner or were diagnosed much too late. A further 8% had to fight to get the correct diagnosis.

28. www.nos.org.uk 9. Which of these best describes how you came to be diagnosed?

29. www.nos.org.uk 9. Which of these best describes how you came to be diagnosed? I was diagnosed early enough to avoid broken bones I was diagnosed early after a discussion about risk factors for osteoporosis I was diagnosed after I broke a bone and a health professional thought I should get checked I was diagnosed after several broken bones I was diagnosed after paying for a bone scan myself I realised that I might have osteoporosis but had to push to get a scan I was only diagnosed after a long battle to have a scan A family member/friend noticed that I had lost height and suggested that I might have osteoporosis Other

30. www.nos.org.uk 10. Which of these best describes how you feel about the way you were diagnosed?

31. www.nos.org.uk 10. Which of these best describes how you feel about the way you were diagnosed?

32. www.nos.org.uk 11. Which of the following describe how you felt about osteoporosis before you were diagnosed?

33. www.nos.org.uk 11. Which of the following describe how you felt about osteoporosis before you were diagnosed?

34. www.nos.org.u k Risk Factors

35. www.nos.org.uk Summary Most people had easily identifiable risk factors for osteoporosis. 37% knew they were at risk. 86% did not have an assessment or discussion about their risk factors for osteoporosis prior to a diagnosis. 85% received no advice for their family members who have an increased risk (due to strong genetic links). 38% received no basic lifestyle advice for maintaining bone strength.

36. www.nos.org.uk 12. Common Risk Factors

37. www.nos.org.uk 13. Did any health professional ever talk to you about your risk factors/risk of osteoporosis before you were diagnosed?

38. www.nos.org.uk 14. Following your diagnosis, did any health professional give you lifestyle advice, such as increasing weight-bearing exercise, getting a calcium rich diet, or getting vitamin D through sunlight exposure?

39. www.nos.org.uk 15. Given that osteoporosis can run in families, did your health professional give you advice on discussing bone health with your family?

40. www.nos.org.u k Treatment and Care

41. www.nos.org.uk Summary 29% felt that most or all of the treatment and care they received could be improved - an additional 45% said that some could be improved. 35% felt that their GP did not know much or needed to know more about osteoporosis.

42. www.nos.org.uk 16. Which of the following best describes your GP?

43. www.nos.org.uk 16. Which of the following best describes your GP?

44. www.nos.org.uk 17. Do you take treatment for osteoporosis?

45. www.nos.org.uk 18. Have you ever experienced side effects as a result of any osteoporosis treatment?

46. www.nos.org.uk 19. Which best describes how you feel about the osteoporosis treatment and care you have received from health professionals (not including private or paid for care)?

47. www.nos.org.uk 20. Which best describes how you feel about the osteoporosis treatment and care you have received from health professionals (not including private or paid for care)?