Actions & AK email the board to see what the general consensus is and start –to planning. Possibly to host this in June responsibility IX. Agree with network colleagues how to collect relevant outcome data and share via and educational event Discussion As discussed above summary Conclusion Actions & No further actions responsibility 5. of Reference Discussion The board noted the tabled document and signed it off. summary Conclusion Terms of reference agreed and signed off Actions & No further actions responsibility 6. User Involvement update Discussion GW said in his experience the same issues remain, diagnosis is a problem summary but once patients are in the system the treatment is good. A discussion ensued the difficulties around diagnosis. AK said the biggest win would be able to infiltrate the GP group perhaps at a national GP conference. All agreed that local educational events with GP’s in attendance would be a good start to this. Conclusion The noted the discussion Actions & No further action responsibility 7. Research update Discussion AK to the circulated report and explained about the S-PROM and summary 100K genome. Asked all to consider all appropriate patients for trials. Conclusion Discussion noted by the Board Actions & NA responsibility 8. Future Meeting Dates Discussion MML explained that quite a few people sent apologies and didn’t find the summary proposed dates convenient. Conclusion The board felt a wider consensus should be gathered to try and have the best attendance possible. Actions & to send doodle poll to all on the distribution list to ascertain the best MML date/time. responsibility 9. Any other business Discussion GW asked for titles and organisations to be put on minutes in the future for summary ease of reference.
Actions & responsibility AK –to email the board to see what the general consensus is and start planning. Possibly to host this in June IX. Agree with network colleagues how to collect relevant outcome data and share via and educational event Discussion summary As discussed above Conclusion Actions & responsibility No further actions 5. of Reference Discussion summary The board noted the tabled document and signed it off. Conclusion Terms of reference agreed and signed off Actions & responsibility No further actions 6. User Involvement update Discussion summary GW said in his experience the same issues remain, diagnosis is a problem but once patients are in the system the treatment is good. A discussion ensued the difficulties around diagnosis. AK said the biggest win would be able to infiltrate the GP group perhaps at a national GP conference. All agreed that local educational events with GP’s in attendance would be a good start to this. Conclusion The noted the discussion Actions & responsibility No further action 7. Research update Discussion summary AK to the circulated report and explained about the S-PROM and 100K genome. Asked all to consider all appropriate patients for trials. Conclusion Discussion noted by the Board Actions & responsibility NA 8. Future Meeting Dates Discussion summary MML explained that quite a few people sent apologies and didn’t find the proposed dates convenient. Conclusion The board felt a wider consensus should be gathered to try and have the best attendance possible. Actions & responsibility MML to send doodle poll to all on the distribution list to ascertain the best date/time. 9. Any other business Discussion summary GW asked for titles and organisations to be put on minutes in the future for ease of reference.