Advised not to contact Macmillan Helpline

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Yes, that's right.

As we wait for a definitive diagnosis. I asked PALS to intervene. This prompted a call from a specialist nurse. I said that I had spoken to the Macmillan Helpline (what else are you to do when you get a letter out of the blue on a Saturday implying that your husband has Stage 4 cancer?).

The nurse became very frosty and told me that this was not a good idea, because they had no access to my husband's notes and would not be able to help.

To say I was surprised by this was an understatement. I had actually found the helpline extremely helpful. Is this sort of attitude usual?

  • The guys on the helpline are incredibly knowledgeable. and will happily share that whenever it is appropriate to do so, but the nurse was right, if a little derogatory, it would be unprofessional, and maybe unethical for the guys at Macmillan with no access to your personal notes to, in essence, have an educated guess.

    This is a big reason for the community's popularity and success, for those of us going through a similar journey, cancers, treatments, how to live with it, manage emotions and the impact on family.

    Eddie 

  • I was treated like dirt from the outset. Shouted at in public by the oncologist and treated in an off hand manner by various other medical personnel.

  • Hello  

    I am so sorry to read this - it's vey unprofessional to say that.

    I have passed you post on to the powers above to look into.

    Best wishes - Brian.

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  • Hi ,

    we were at our wits end and I took to contacting 1st minister and every senior politician in Scotland . Within an hour we had contact from Anas Sanwar the Scottish Labour Minister who was very sympathetic and pointed us in the right direction with the help of his aide . 

    we eventually received an email from John Swinney telling us to contact MacMillan for support while we waited . The email was all posturing the why and why nots with graphs and stuff we were not interested in . We were needing help . So totally understand . And YES MacMillan are very supportive as is this forum . We would be listening without the support given 

  • I asked a nurse specialist for a second opinion, he raised his voice, shouted, as my wife and others sitting outside heard him " I'm not paying for that, I'll have to put it though finance first, senior management".

    A rather rough, red in the face man with a strong Irish accent, told my consultant at a later date, he said he was probably having a bad day.

    More like working far too much overtime.