What stage of diagnosis are you assigned a Macmillan nurse?

At what stage in your diagnosis are you assigned a Macmillan nurse?am I wrong in thinking you are only assigned one for end of life care??

Many thanks

  • Hi there ... 

    I think they are on some oncology wards ... but no one I know had a designated McMillan nurse ..

    Though if you go on their home page .. you can read what they do ... and call them on their number .. that's what l did a couple of times and they really helped me ... you could always ask them what they are doing in your area ... they may have some things going on to help ..

    Hope that helps a little ...  Chrissie x

  • Thanks for reply Chrissie

    My mam got a call from a MacMillan nurse today asking if she could come out to visit her tomorrow.said my mams gp had referred her over.i personally have only known them visit at home near end of life.

    Thanks again

     

  • Hi ya ..

    So glad you got a call .. I used to volunteer for McMillan, and visit people with cancer ... it wasn't for end of life .. they wanted someone to chat too .. tell her your worries and I'm sure she will put your mind at rest ... try not to over think it .. though easier said then done ...but at least your getting your own one to help ...  

    Chrissie x

  • So reassuring to read this.mams diagnosis was only 4 weeks ago and the shock of being told she didn't ask anything and the worry and unanswered questions is really effecting her.thank you so much for taking your time to reply to me

    Nicola x

  • Hi,

    It seems to vary from one area to another. I was assigned a MacMillan nurse just as I was starting palliative chemo. In some areas the GP makes the referral to MacMillan. The MacMillan website says "You'll need to be referred by your GP, your hospital consultant, a district nurse or a hospital ward sister. Don't hesitate to ask them if there are Macmillan nurses available in your area. Macmillan nurses work throughout the country, but if there isn't a Macmillan service in your local area, you can be referred to alternative specialist services." www.macmillan.org.uk/.../macmillan-nurses.html

     

    Hope this helps

    Dave

     

     

  • We were assigned on ewhen they finally decided it was cancer after months of invasive testing. She was absolutely bloody useless, did nothing and I had no help or support from them at all. She had the nerve to speak to us at the hospital recently as we saw her in the corridor just by chance, I wanted to scream at her. 

  • Hi there.  I hope you do not mind me coming into this conversation.  My dad met with his oncologist consultant yesterday to discuss his CT results and was told he will have 12 to 18 good months and will now be referred to McMillan nurses as nothing can be done for him.  He has cancer of the lung and the growths have increased in size.  I do not wish to bombard both of my parents as they're both in shock of tge results.  I was under the impression that the Mcmillan team was bought in near to ones end of life to make things confortable in the patients last weeks/days once they have introduced themselves.  Sorry for my ignorance x.  

  • Hi luv

    I'm so sorry to read your news. My mam passed around 3 months after macmillan started coming to her home. She was saying it was pointless them coming as she felt fine. Don't think she realised the slow release morphine she was taking was masking any pain which now looking back was a blessing. 

    Thoughts are with you 

    Nicola

  • Evening nicola.  Many thanks for replying to my question.  My dads consultant has never said what stage his cancer is at to which I find unusual.  My dad says he feels fine in himself and is working when he chooses to so looking on he appears okay.  Im sorry that your mam passed.  My concern is that my dad feels fine in himself yet panic set in with him being passed onto the macmillan nurses. X

  • Hi,

    Don’t worry too much as MacMillan may come in at any stage they are needed. Their role can range from advice and support to newly diagnosed patients through to end of life care.

    You Dad may well have been told his stage but didn’t remember afterwards - us patients typically remember only 40% of what we’re told when we are stressed.

    If he received a big batch of papers including consent forms, data sharing information, hotline numbers etc please check through it for a care plan. All cancer patients should receive a copy of this but it isn’t always properly discussed with them. It may have some unexplained numbers and letters on it like T3N3M1 this formula can be translated into staging. There’s an explanation at www.cancerresearchuk.org/.../stages-of-cancer

    If your Dad gives permission for them to do so, his named nurse or MacMillan nurse will answer any questions you have about his case but he will need to consent to this first.

    Best wishes

    Dave