Diagnosis – patient stories

This topic contains 12 replies, has 10 voices, and was last updated by  sarajmorgan 10 years, 9 months ago.

Viewing 13 posts - 1 through 13 (of 13 total)
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    Posts
  • #95699

    sarajmorgan
    Participant

    Dear All

    I hope you don't mind me posting on the discussion forum. My name is Sara and I have recently been given responsibility for our GP education and awareness programme at Myeloma UK.

    I am working on a report which will examine some of the key issues and challenges in diagnosing myeloma patients and the impact that a delay in diagnosis can subsequently have, both in terms of quality of life and emotional wellbeing.

    If you have experienced a delay in diagnosis or have had a less than positive experience with your GP in them missing potential symptoms I would very much like to hear from you. Conversely, I hope to cover some good examples of how GPs have been thorough and efficient and investigated symptoms swiftly to ensure a rapid diagnosis.

    If you have a story to tell I would very much like to hear from you. I have a set of interview questions that I would like to ask, over the telephone, that will take around 30-40 minutes.

    I plan to do this over the coming few weeks so it would be great if you could email me at sara@myeloma.org.uk, if you are willing to participate, giving some information about yourself, your experience and a telephone number that I can contact you on to arrange a convenient interview time.

    Thanks in advance for your help with this.

    Kind regards

    Sara

    #95700

    ellen
    Moderator

    Sara has asked me to pass on her thanks to everyone who has responded. Please continue to email her with your stories, both good and bad.

    Ellen

    #95701

    eve
    Participant

    Hi Sara and Ellen

    Spoke to Sara today,so mine is done,I hope all of you looking at this take the trouble to give Sara some help,as the need for doctors to be aware of Myeloma is very important,and it will make a difference.

    POST IF YOU HAVE DONE IT. Eve.

    #95706

    Kazzam2
    Participant

    Hi Eve,

    Have emailed Sara today, she is phoning me next Tuesday.

    I agree, it is very important to make doctors more aware.

    Come on folks! 🙂

    Karen x

    #95704

    tonyf
    Participant

    Hi everyone, spoke with Sarah yesterday and completed my questionnaire, quite painless really!
    Yes I agree with Eve & Karen it really is important to make doctors more aware of myeloma.
    So please if you have not responded, do it now.
    Regards
    Tony F

    #95705

    tishwish
    Participant

    Hello Ellen.

    I have passed on my husbands details by email to Sara but have not heard anything back from her.

    trish xx

    #95707

    Catlyn
    Participant

    Hi Eve
    I too have e.mailed my husbands details to Sara so we will get a reply soon.
    Lyn

    #95708

    adamsp41
    Participant

    Hi all…e-mailed Sara on friday and got an e-mail today with questionaire this Weds…simples …Phil 🙂

    #95709

    tishwish
    Participant

    Hi everyone.

    I got email from Sara today and we are doing our interview on Wednesday.
    🙂

    Trish and Peter x

    #95710

    Kazzam2
    Participant

    Hi All

    Spoke with Sara this morning, so questionnaire done, as Tony said, it is painless.:-D

    Karen x

    #95711

    sarajmorgan
    Participant

    Thank you to everyone who has been in touch with me to discuss their experience of diagnosis. If you have been in contact and I haven't already interviewed you, you should have received an email from me setting up a day and time to call you.

    I have now received enough responses for the time being but will post on the discussion forum if I need anyone else to interview.

    Thanks once again to all those who have participated so far.

    Kind regards

    Sara

    #95702

    bandityoga
    Participant

    Sara phoning me today

    Maureen

    #95703

    meganjane
    Participant

    I passed these details onto Phil last week and he did the survey today 🙂

    Megan

Viewing 13 posts - 1 through 13 (of 13 total)

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