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MacMillan nurses - my experience

Everytime I hear an advert on the radio about Macmillan nurses I am afraid I feel anger arising as my experience of dealing with macmillan nurses with regards to my 36 sister her young family of 3 children and her 43 year old husband when he was dying of a brain tumor was wholly negative. The MacMillan nurse ( when she actually came) appeared distant, disinterested, patronizing and ''help' was very half hearted. My sister does not know this to this day ( my brother in law passed away November 2016) but often the MacMillan nurse ONLY visited when prompted by a complicated network of desperate  messages I would have to get to her via my mother in law was a district nurse in the same clinic. In the end our saviours were ' hospice at home' but again this was only sourced through our own family network of contacts. We didn't make a complaint as at the time the entire situation was extremely traumatic and as a family we were emotionally mentally and physically drained. Largely due to the help we had to ' find' ourselves via late night calls to friends " in the know" . I am so sorry to be negative as I know the MacMillan advertising campaign is huge but I have to be honest of our experience to warn other families not to be afraid to speak out should they be treated in a similar way. I suppose it is because MacMillan nurses are portrayed and advertised as being exceptionally kind and compassionate ( which I am sure many are) that made our experience all the more shocking. We live in south east Essex. I hope no one else has the nurse my sister  was assigned. 

  • Hi Minska

    I am in total aggreement about MacMillan chat being very very cliquey. I joined years ago on behalf of my husband. He had a rare cancer of the parotid gland which is not classed as a head & neck cancer but is treated in same dept maxillo facial.

    There was a fairly small group of head & neck patients at the time. Some broke away to form a clique I was invited to join this closed group,which I did. The person who started the group stepped down,and a very outspken woman who was a union rep took over. She made it her business to exclude everyone she didnt want in the group. So I found myself locked out of the group!! No explanation or reason given.

    When I recently looked on MacMillans site it said head and neck group closed. No further explanation given either. So is H&N cancer on the decline and no longer needs MacMillan, I dont think so.

    All I can say is thank heaven for this chat place and all the kind folks that contribute.

    xx