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My decision or doctors decision uk

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11 years 2 months ago #42711 by Sali
My decision or doctors decision uk was created by Sali
I want to know if inevitably it is my decision to start any mediciation on my daughter or if it is doctors decision. The reason is that the doctor wants to start rituximab on my daughter. And i don't want to. I feel as is they are pressuring me to start it. She has had ivig, cellcept and prednisolone, which did not do much for her. Her platelets were 10, 3 days ago. I would like to do wait and see approach. If it becomes necessary then i don't mind ivig. We are in uk. Please can you give me your views.


Thank you.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 2 months ago #42713 by Sandi
Replied by Sandi on topic My decision or doctors decision uk
It is your decision. A doctor can, however, refuse to see your daughter if you go against medical advice. If that happens, you would have to find a doctor who will support your watch and wait approach. It is probably easier to find a doctor in the UK who will do that because the UK generally believes in watch and wait more readily than the US does. Hopefully, you can compromise and use IVIG if necessary.
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11 years 2 months ago #42714 by Sali
Replied by Sali on topic My decision or doctors decision uk
Hi, thanks for replying. How and where would i find my own doctor? We are on nhs. Does that mean i would have to go private?
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11 years 2 months ago #42718 by alisonp
Replied by alisonp on topic My decision or doctors decision uk
Sali, if you get in touch with the ITP support association www.itpsupport.org.uk/ they will giv e you a list of the NHS centres they have approved as specialising in ITP. You just need to ask your GP for a referral for a second opinion. I don't know where you live, but Dr Grainger at Manchester Royal Children's Hospital has been great with not treating my son
The following user(s) said Thank You: Sandi
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11 years 2 months ago #42719 by Sali
Replied by Sali on topic My decision or doctors decision uk
Hi, i am in london.

If you don't mind can you please tell me your story.

Thank you
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11 years 2 months ago #42724 by alisonp
Replied by alisonp on topic My decision or doctors decision uk
Can do later. Just now I found the right link to the centres of excellence - they give contact details for them too itpsupport.org.uk/itpforum/centres.htm

Good luck, Ali
The following user(s) said Thank You: Sali
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11 years 2 months ago #42725 by Sali
Replied by Sali on topic My decision or doctors decision uk
Hi i can see that St. Georges hospital, sw17 0qt deals with children's itp, and is closest to me. Can i get my daughter referred to there? And how?

Thank you
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11 years 2 months ago #42728 by alisonp
Replied by alisonp on topic My decision or doctors decision uk
I think you just have to ask your GP to refer for a second opinion. www.nhs.uk/chq/Pages/910.aspx?CategoryID=68
The following user(s) said Thank You: Sali
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