About ITP
Childhood ITP
Teenage ITP
Adult ITP
Medical Advisors
Research into ITP

Events
Convention
Seminar

Send for:-
Publications
American Perspective

Downloads
Leaflets and more....

Search this site

How we spend your donations

Convention 2007

Summary of patient's evaluation answers from the 48 returned. See below for suggested topics and other comments.

What other topics relating to ITP would be of interest?

(Topics suggested, in no particular order)

• Drug trials
• More adult Quality of Life
• Allergies and ITP
• Prescribed medications and their side effects and the management thereof
• Long term management of chronic ITP, what the future holds.
• Experiences of long term ITP sufferers. Experience of initial diagnosis of older sufferers.
• Asplenic patients
• Remission
• Extent and "growth" of bruising, also tender areas, i.e. legs and arms.
• Management of any possible operations. How to bring count up for surgery. Complication for ITP patients undergoing general surgery and/or treatments, especially around 18 weeks target.
• Length/type of prophylactic antibiotics following splenectomy.
• Possibility of inherited risk of ITP.
• How to get on the adult register. Access to register. Progress of register and results.
• Pros and cons of different treatments and their side effects.
• Counselling.
• Diet and exercise, dos and don’ts
• Complementary and alternative medicine, e.g. traditional Chinese medicine. Vitamins, minerals etc. in conjunction with conventional medicine.
• Future R&D projects favoured by each expert.

Any other comments (summarised but in no particular order)

• Speakers, helpful and informative.
• Good coverage of all topics, medical to social.
• A bit alarming at how much worse ITP could be. Very useful convention.
• Nothing new but clarified my knowledge. Good to know advisors cared.
• A big thank you, came away with the answers I needed.
• Prof. Blanchette’s lecture more suitable for medical profession. Timetable adult and childhood session to allow attendance at both.
• Give experts copies of questions before discussion forum. Convention well organised.
• We can away feeling stronger and less isolated and more confident in local hospital.
• The personal touch with Dr Paula Bolton-Maggs very helpful and informative. It is hopeless to get information from my own consultant.
• Very good. access to experts all in one place and time is a credit to the Association led by Shirley. Well done.
• Good opportunity to meet other ITP sufferers and helped to give me confidence discussing treatments with my own haematologist.
• Catering not a patch on last year.
• Suburb venue, very good organisation, positive atmosphere, and very informative and enjoyable day.
• Excellent venue/lectures. Very interesting and helpful day.
• Thank you for organising such an informative and pleasurable day.
• I have a better understand of ITP from the talks and discussions. Thank you to the Drs and volunteers and especially Shirley.
• The Association was invaluable to me in the early days, helping me to understand what it is etc.
• A way of meeting other sufferers with similar symptoms.
• Re future venues, better public transport links would be appreciated.
• The balance is about the right, I look forward to the next convention.
• Very interested to hear of new drugs. Less clear of PCTs will fund them. Please keep up the good work, many thanks.
• Have learned much more from conventions as GP and some consultants are not up to date on treatments.
• Have learned much more from conventions. Hospital do not help families and spouses to understand it. Keep up the good work Shirley, many thanks.
• Very enjoyable.
• Would have liked to speak personally on a one to one basis to a doctor/professor.
• Thanks for organisation.
• Credit to the organisation.
• Very helpful to get more information, very well organised.
• This was by far the best convention of any kind I have ever attended. Excellent speakers who did not speak down to us, marvellous venue. Thank you for a superb day. Lecturers conformed my knowledge of available treatments.
• The discussion could have been longer and the seating could have been more comfortable.
• Well done for all the hard work you have put in for this. It provides a network for like-minded people who would otherwise feel isolated.
• Split the group, adult in the morning and childhood in the afternoon. Very little food left after meeting. Thank you so much for the time and effort organising the convention.
• Better to separate adult and childhood ITP sessions.
• As first timers, we found everyone very welcoming and helpful. The content and delivery of the lectures very informative. Acute and chronic ITP appear to have different prognosis and management so some issues are not relevant to each group.
• The organisation and presentation was first rate, thank you.
• Would it be better for ITP sufferers to go to specialist ITP centres. Local hospitals not up to date.
• How can the Association bring the Doctors/Consultants up to speed with the latest information, held by its medical advisors