Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: My decision or doctors decision uk

My decision or doctors decision uk 6 years 3 months ago #42711

  • Sali
  • Offline
  • Posts: 11
  • Thank you received: 0
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.

Please Log in or Create an account to join the conversation.

My decision or doctors decision uk 6 years 3 months ago #42713

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2355
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.

Please Log in or Create an account to join the conversation.

My decision or doctors decision uk 6 years 3 months ago #42714

  • Sali
  • Offline
  • Posts: 11
  • Thank you received: 0
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?

Please Log in or Create an account to join the conversation.

My decision or doctors decision uk 6 years 3 months ago #42718

  • alisonp
  • Offline
  • Posts: 1052
  • Thank you received: 119
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

Please Log in or Create an account to join the conversation.

My decision or doctors decision uk 6 years 3 months ago #42719

  • Sali
  • Offline
  • Posts: 11
  • Thank you received: 0
Hi, i am in london.

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

Thank you

Please Log in or Create an account to join the conversation.

My decision or doctors decision uk 6 years 3 months ago #42724

  • alisonp
  • Offline
  • Posts: 1052
  • Thank you received: 119
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

Please Log in or Create an account to join the conversation.

My decision or doctors decision uk 6 years 3 months ago #42725

  • Sali
  • Offline
  • Posts: 11
  • Thank you received: 0
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

Please Log in or Create an account to join the conversation.

My decision or doctors decision uk 6 years 3 months ago #42728

  • alisonp
  • Offline
  • Posts: 1052
  • Thank you received: 119
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

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
Moderators: jaycharness

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo