I have a 5yr old with now chronic Itp, we live in n Ireland, under great care in Belfast Hosptial with dr mc cartney, however I have made

Numerous attempts to try and arrange a appt with an Itp specialist to manage his treatment plan, or just to talk over the best way forward, as in n Ireland there are no Itp specialists, I have rung numerous times to get an appt with dr Angela Thomas in Edinburgh Hosptial, but after 3 months I'm still waiting for her to get back to me, even told her I would pay privately feel so let down, and just wondering who is best doc now to try and see.??

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8 Replies

  • Hello,

    My son who is 2yrs old has had ITP since Feb 2013 - he is under the care of Dr.John Granger at Manchester children's hospital. We also have access to a specialist ITP nurse who we can call for advice when we have any concerns.

    Dr. Granger has written about childhood ITP on the ITP support website.

    Hope this helps.

  • When I wanted a second opinion I asked my consultant at Warwick Hospital to contact Dr Drew Provan at Barts. I had to give my consultant the details for him to send a letter. He sent the letter asking for an appt for me to see Drew. It took a couple of months for the appt to come through. When it did, I went down to London and my medication was changed that same day. My advice is for you to go through the NHS channels and get referred Dr to Dr. Hope that helps.

  • Hi like Nicky D we did our research in to the different ITP Specialists and we asked our consultant to contact Dr Drew Proven. Our consultant made a telephone call the same day to St Barts and within about a week my daughters medication was changed and now my daughter has a pretty stable platelet count

  • Thanks everyone, I have my consultant for a letter of referral, she told me because the treatment is available here, she wouldn't refer me for second opinion, it's not the treatment I'm questioning its a proper and specialists management of treatment I would like, so I rung for private referral to no avail, I will try the docs mentioned to see if they can help.

  • My son, who is nearly 4 has been under Dr Grainger for over 2 years now. We find him brilliant and the specialist nurse , I wouldn't be sane without them !!! Hope you have some luck soon, I would definitely push for the second opinion as you need a specialist to manage his case. Good luck x

  • Thank u, I will try dr granger in Manchester

  • Just as an extra bit of information Dr Grainger is one of the guest speakers at this years annual ITP Support Association on April 5th, giving a talk on Childhood ITP itpsupport.org.uk/conventio...

  • Thank u, hope I have better luck with him, think I will attend the annual gathering this year to.

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