"Is splenectomy still a valid ITP treatment?"

Sandi /Ann

As always thanks for the posts. I am glad to hear, that splenectomy is not exactly the only option.

Thanks for the list of centres of excellence, I am not surprised that my current hospital is not one!

The good news is a local hospital is on your list, so I have decided I will get a referral. I appreciate this condition is rare and that maybe all the doctors that I see may not be as well informed on ITP as others, the hospital I currently attend (although had no issue until, the splenectomy comment) all the doctors seem specialists in oncology and maybe have limited knowledge in this disorder. I kinda got the impression, I should be grateful my condition is not malignant (which of course I am) and they have more pressing patients to deal with. Maybe they feel a splenectomy will get me off the "books" quicker. (Maybe that is a bit cynical and unfair).

I am prepared for the reality that the steroids might have only temporarily masked my ITP, only because of the information that I get from this site,(which by the way, has been my sanity over the last couple of months). So think I will get this referral underway, by the way, I couldn't get the link to work, who is Dr Provan, I have private medical cover, is he a consultant that accepts private patients do you know?

Thanks again

John

Hi John, Dr Provan is a consultant who is an expert in ITP. He works in the only tertiary centre for ITP in the UK at he Royal London Hospital, which means that they take referrals from other consultants when they need advice, so he has experience of the more difficult cases. He also does research and fronts the ITP Registry which records details from all ITP patients in the country (with their consent) in order to look at the genes and so on. He doesn't do splenectomies any more with his patients.

Other haematologists around the country might suggest splenectomy but if so the indium test should also be offered which shows where the platelets are being destroyed. If in the spleen the chance of success with a splenectomy goes up and if in the liver it goes down. Helps a bit with the decision. But before that other options should be offered.

By right we are allowed to get a referral to any hospital, so if you want to see Dr Provan then ask your GP to refer you. If they say it's not in the area then argue a bit. If you want to go private you can contact him at the Royal London.