Hi
I am going to moan now - sorry in advance.
Today I was expecting a visit at 1pm from my Macmillan nurse.
At 12.40pm she rang to say she could not come and see me as she had an urgent referral at 3pm.
This nurse was away last week and the Mac doctor said she would ring me on Monday to arrange to see me. She rang at 6.30pm, leaving a message on answerphone to say she would be in at 1pm today.
I have been in alot of pain etc since last Friday and really felt I needed to see the nurse today.I said please come in and she said , basically ,no.
I feel let down by the Mac nurse.
Am I being over the top - please answer honestly as one side effect of cancer is that I am sensitive and emotional
Thanks
Ena
My mac nurse has let me down too, so much so that I never want to see her again.
I feel that they literally turn up for an hour and leave on the dot whether you are in the middle of a conversation or not…i wouldn’t mind if they were honest and tell you that they can only give you an hour but they make out that they’re there for you as long as you need!!
I haven’t seen mine for 4 weeks now and she finally called on Monday to see how I was, but it’s too little too late.
Therefore, i think that you have every right to moan. They promise to provide a service and they just aren’t doing it.
Hi Ena – I’m sorry to hear you’re having some pain but can’t get your Mac nurse to visit. Is there anyone else involved in your care that you could get in touch with to help you? My main contact when/if I have any problems (I have bone & liver mets) is the nurse in my onc team, who is always great and will arrange whatever is necessary if I need any support. I’ve also had a very good relationship with our local hospice – their doctors & nurses have been very helpful when I’ve needed advice, information or local support. I’ve met the local Mac nurse, but haven’t needed anything from her, so don’t know if she’s as unreliable/busy as you and Alison have experienced.
Hope you get some support soon –
Love, Marilyn xx
Hi Ena
Sorry you’ve been let down. What about your GP? In my area the local hospice provides a MacMillan type service and liaises very closely with GP. I feel very supported by both though haven’t had an emergency yet to really test the system.
Jane
Hi Ena
Sorry to hear you feel you have been let down. Is there only one Macmillan nurse in your area?. In mine there are 4. At the moment mine is off on long term sick so I haven’t seen her for several months. Her colleagues do ring me though just to make sure I am ok.
Also my gp will come out to see me if ever I need anything or just want to talk.
Do you have a local hospice that you could contact? I have also found my local hospice very supportive especially the pallative care dr. I also go there for complementary therapy and the team are very helpful and supportive
I hope that you get some support soon and also to sort out your pain relief
Jools
Hi all
thanks for your replies.
There are about 6 Macmillan nurses in the area but I have a nominated one. They work from, or are closely linked to, our local hospice. A consultant in palliative care came out to see me when my nurse was away last week.
The nurse did come yesterday, as promised, but as I am going away next week, decided not to alter treatment until I return.
I have not gained a great deal of help from Mac although they have tried, changing medicine 5 times in 10 days. What a pain this was just before free prescriptions came in !
I have lost a bit of trust in the nurse know, but will need to wait until later in April before we start juggling medication again.
Ena