Just to let you know I saw the consultant in Edinburgh who will advise my local team. He did say all he could do was advise and it is not a given they will follow the advice.
He said a BMB is not advised for me until my acute severe anaemia is controlled as it will only confirm the anaemia.
I see the local team next week.
I hope that your local team can follow his advice. It is worth putting up a fight if the specialist has suggested something that they don’t want to follow up on.
Just from the bare bones of your post I think you could be forgiven for wondering why you paid to go private but hopefully there is a lot of useful information in there that you are/will be benefiting from.
Thanks for letting us know how it went
Very best wishes. Jan
I went private as I had/ have no trust in the local team. It's a long story and if a work of fiction would be " too far fetched".
At least paying for a second opinion ( no right to a second opinion in Scotland) I know the local NHS team have made bad errors of judgement.
that sounds more positive! I lived for five years on Scotland but didn’t know there was no right to a second opinion there. In fact they covered my expenses to travel to see Prof Harrison in London and see Mark Drummond in Glasgow.
Good luck with your self advocacy with your local team. I hope all goes well from now on
Best wishes, Jan
fingers crossed your local guys listen 🤞
Glad to hear that you have expert consultation that you can trust. It is worth the cost. getting the guidance heeded will require advocacy on your part. Wishing you success moving forward.
I had been wondering how you had got on. Hope it is helpful in moving towards some clarity and answers.
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