1. The St Ives HIV cluster 2006 Frances Keane Consultant in GU/HIV medicine Royal Cornwall Hospital, Truro

2. Overview Awareness of a potential problem Events leading to the decision to “go public” Managing the decision to “go public” The response of the local population Results of testing The “aftermath”

3. Awareness of a potential problem

4. A number of cases diagnosed over a 7 month period Aspects of concern Heterosexual, all from the St Ives area Cases appeared to be linked sexually Big age range (early 20s to late 50s) Risk over a potential period of up to 8 yrs Perception in Cornwall that there is virtually no risk of HIV transmission through heterosexual sex

5. Events leading to the decision to “go public”

6. Initial “Outbreak control” Meeting 06/04/06 RCHT: GU team, Consultant microbiologist PCT: Director of Public health HPA: Consultant in Communicable disease control

7. Issues raised Partner notification (PN) was incomplete despite intensive efforts by GU MDU advice had already been obtained in the case of a young pregnant woman suspected to be at risk There was considerable anger from some of the HIV positive cases involved Proactive media campaigns elsewhere may have been counter-productive and driven the incident underground

8. Initial “Outbreak control” Meeting Action agreed Not to “go public” at that stage Persist in trying to gain co-operation for full PN Meet with the St Ives GP practices to raise awareness Obtain legal advice from RCH solicitors Ask NHS South West Strategic Health Authority (SWRHA) for support Review the situation in 2 weeks

9. Exploratory meeting with GPs One surgery building houses all GPs for the local area GPs aware of some of the diagnoses, not all The need for confidentiality stressed Raised awareness of HIV- and AIDS indicator conditions GPs would not feel comfortable offering HIV testing in a “large-scale” manner

10. Outbreak control meeting 19/04/06 Additional representation from SHA : Regional Epidemiologist & communications

11. Outbreak control meeting 19/04/06 Update No progress on PN, despite outreach from GU Individual/s informed that confidentiality might be breached to assist PN Feedback from liaison with Doncaster-if they had not gone public additional cases would not have been identified.

12. Outbreak control meeting 19/04/06 Conclusions Continue all efforts for PN A public media campaign may be required to alert the local population and encourage HIV testing to identify additional cases Careful planning would be required for this course of action A decision on a public campaign would be reached on 24 th April 2006

13. Outbreak control meeting 24/04/06 Trust solicitors & senior management join the fray

14. Outbreak control meeting 24/04/06 Some details of other people potentially at risk had been obtained and were being acted on However, PN remained incomplete RCH view was that it could not discharge its public health duty to the wider community without informing the general public

15. To “go public” or not Argument FOR Discharge public health duty and raise awareness of potential risk to heterosexuals in the community who otherwise wouldn’t present for HIV testing Arguments AGAINST Create public panic Alienate possible sources of additional PN information Risk confidentiality of those already identified as HIV +ve National media may well become involved

16. Decision made to “go public” on 9th May

17. Managing the decision to “go public” Issues to deal with Release of information to the press Setting up a telephone help-line Arranging HIV testing facilities Follow-up of anyone diagnosed as HIV+ve

18. Release of information to the press Press conference by Director of Public Health Agreed press statement No input from the local GU/HIV team to reduce the risk of breaching existing cases’ confidentiality GU/HIV colleagues from adjacent areas were asked to provide an expert opinion on HIV to the media

19. Setting up a telephone help- line NHS direct v Local Call Service? Costs similar NHS direct could provide 24 hour help- line and booking service for patients requesting testing Pre-prepared scripts for NHS Direct staff to follow

20. Arranging HIV testing services 2 venues: St Ives GP practice and Truro GU 10 minute slots, 280 slots per week HIV testing alone Proforma used to gather information Results phoned to individuals within 7 days Any positives would be seen in Truro GU the following working day

21. The story breaks Concerns about a potential leak before the planned press conference Reactive press statement prepared clinic staff on stand-by over a week-end to man a help-line and provide HIV testing Press conference brought forward The story was leaked a few hours before the press conference

22. Hiccough with NHS Direct Within 48 hours of help-line going “live”, NHS Direct informed RCHT that it could only provide a help-line and no booking service An emergency booking team had to be “scrambled” from RCHT

23. The response of the local population 200 calls to NHS Direct within the first 72 hours 450 calls were made in total 300 people tested for HIV over a two week period

25. The results All 300 were negative

26. Reflecting after the event members of the “outbreak team” agreed that we followed the correct course of action “Going public” was exhausting and extremely time-consuming The weakest link was NHS Direct Our concerns were that those most at risk had felt unable to come forward for testing

27. The St Ives dilemma Heterosexual, all from the St Ives area Cases appeared to be linked sexually Big age range (early 20s to late 50s) Risk over a potential period of up to 8 yrs Perception in Cornwall that there is virtually no risk of HIV transmission through heterosexual sex………………………

28. The St Ives Dilemma ?