Who are MacMillan Nurses and where are they?

Hi Rosiee  

when you were first diagnosed at the Christie, you should of met your clinical nurse specialist who would of given you the contact number to call the nurses if you have any questions or problems. The CNS nurses are your go to when you are still under the hospital. 

When you get discharged from the hospital, as end of life, then your care will transfer to your GP and the district team, which includes the community MacMillan nurse. I am sorry you didn’t get more advice from the hospice though when you asked, they should be able to explain things in more detail for you, so that was disappointing to read. 

As all of this seems to be playing on your mind, especially living alone, I would suggest you call the MacMillan support line and chat to someone there. They are available 7 days a week from 8am until 8pm on 0808 808 00 00. 

Thank you. I see now they are palliative care nurses. 

So sorry to read this. If my late wife's experience with GP, District (?) and MacMillan nurses anything to go by then bluntly my advice is argue to be in hospital as long as possible. I was able, just, to look after her at home for 5 weeks and finally managed a hospice place for final 3 days. Once discharged to often useless GPs and non-existent visiting nurses care can vanish.

Have you no-one who can help?

My deepest sympathy.

Dave.

That’s what is concerning me and why I am trying to get myself on whatever radar I need to be under.

My husband died very quickly at home. From 11pm until 5.30 am I was making desperate phone calls. District nurses and emergency GP both saying it was the other’s responsibility to come out and both refusing to do so. 

As for the nurse we were introduced to at end of life. I suppose he was MacMillan. He worked 9-5 week days only and visited us once. It all happened so quickly and over Easter when the NHS shut down in 2007. I don’t know whether access to care is better or worse in 2026? 

I know what I had to do for my husband. Managing his pain as best I could with no guidance and trying my best to calm his anxiety. No end of life medication had been left at our house and that is what the district nurses and emergency GP were arguing about.  An ambulance arrived at 7.00 am with the emergency GP but it was too late then for him to do anything.  My husband had died an agonising death in front of myself and 3 teenage sons. 

Oh that must have been simply awful. Makes your own concerns even more understandable. I cannot believe that "things have got any better". Even more GPs are now just large corporations driven only by target led profits. And massive pay cheques.

I hope someone has better ideas than I as to what you might do/plan.

My sympathy doesn't help but all I can offer.

Dave.

Hi Rosiee 

I completely understand your worry about this. I think all of us would like to see better palliative services in place. As chellesimo says, if you are still under the care of the hospital, your clinical nurse specialist is your starting point. If you have been discharged it’s worth booking an appointment with your GP as they are a key cog in arranging services. 

Hi everyone

It's Steph here from the Community team.

I just spotted your conversation here. Thanks to Rosiee  for your question and to everyone who's supported you so far.

You can find out more about Macmillan Nurses from the Macmillan website here. We offer information about where you might find Macmillan nurses and answers common questions such as 'how do I get a Macmillan nurse'.

Generally Macmillan nurses are specialist nurses that work in different areas of cancer care and treatment. They work in hospitals, hospices and in the community. You might have a Macmillan nurse as your CNS (Clinical Nurse Specialist) in your healthcare team. Some Macmillan nurses are Palliative Care specialists. Our page is really helpful as a general guide to the different kinds of Macmillan nurses you might encounter.

We also have Macmillan Cancer Information Nurse Specialists supporting people through our Support Line services.

 Rosiee we'd advise you to speak to your GP or team at the hospital to ask who your Macmillan nurse is. If they're referring you to a Macmillan nurse and you don't have one, it's ok to tell them this and ask them to put you in touch with them. 

As you've mentioned that you're starting to plan your end of life care, you might find this information from Macmillan on end of life care to be helpful. Please do contact our Support Line if you have questions or just want to talk. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

I hope this is helpful but please do let us know if you have any further questions, or need more help with anything at all.