Hi, just been diagnosed with polycythaemia ruba vere after a car accident.
It has explained a lot of health issues over the past years.
I was wondering if anyone else gets a copy of the letters between the specialist and your doctor?
Mine recent one has me wondering if I fell asleep or my hearing went comparing what he has written to what was said to me.
Anyone else experienced this happening?
Thanks
Richard
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Hi Richard (@clickinhistory), a very warm welcome to the community and thank you for sharing about your diagnosis. I do hope you’re doing okay? I’m sure others on here can share their experiences of receiving their clinic letters. I just wondered, Richard, if you’ve been allocated a Clinical Nurse Specialist at all? In case there’s anything you wish to go through from your letter, it may be worth reaching out to them to see if they can help at all? Please do also know our Support Team are here for you if there’s any information or support you feel you might need around your diagnosis- please don’t hesitate to reach out to us (Blood cancer information and support by phone and email | Blood Cancer UK).
Best wishes,
Tanya.
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Hi there
Yes I have had the same issue with locum consultants letters when I have received them I wondered if we had been in the same room.
They are supposed to be factually accurate
There is what is called the Caldicott Guardian who protects confidentiality and data in all trusts
I have recently written to the data protection officer at my trust who passed on my concerns to the Caldicott Guardian.
Some information has been annotated some of it hasn’t been upheld as it’s the belief of the consultant writing it at the time but it has been noted that I don’t agree with it
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Hi @clickinhistory I am so glad that you have found us.
Yes, I make sure I get copies of all correspondence for my records.
Yes, I have also found that copies of letters between consultant and other consultant or GP seem to vary from what I remember. but only in a minor way.
@TanyaBloodCancerUK has given you a great response.
I look forward to hearing more about you and how you are doing
Take lots of care of yourself and please do contact the Blood Cancer UK support services, look at their website and post on our forum…
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Hi @2DB I had never heard of the Caldicott Guardian
I like to learn something new every day, thanks
Take care
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I found out about the Caldicott Guardian after a few on line meetings with the head nurses of the unit who had mentioned it in passing as they did about factually accurate letters
I don’t think many people are aware that there is such a person
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Hi Tanya,
Thanks for the reply and links.
I have had no offer of a dedicated nurse yet as according to the letter I am well and am on low dose aspirin and painkillers for the accident recovery.
Well check out the links this week
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2DB,
Thanks for that head up, will keep them in mind going forwards
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Hi Erica,
Thanks for the response and advice, I will check out the site more this week.
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