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What can I expect from a Macmillian Nurse?

(29 Posts)
Katymac Wed 06-Jan-16 08:15:59

My Dad is quite poorly again (lung cancer and now a second brain growth

The Macmillian nurses have been conspicuous by their absence ; we have a named nurse we haven't met and have spoken to 2 or 3 times in 20 months

When we ring for help we get no calls back or response at all

Is it a funding thing? Should we be looking for help from other sources?

rogueantimatter Wed 06-Jan-16 09:38:33

Oh no.

I'd recommend calling one of the British cancer support charities to ask how you can get help. Or a national Macmillan number.

When my mum had metastatic cancer the macmillan nurse was in touch very regularly and visited her approximately every other day. She helped her with claiming for benefits and organised for her to get specialist equipment in her home. She advised about the macmillan hospice too.

When I had cancer a macmillan nurse phoned to clarify the result of the first scan, then a few weeks later to see how I was doing and stressed that she was the person I should call if I had any questions. I saw her in hospital a couple of times.

That was eight and four years ago in Scotland so I don't know what it's like anywhere else in UK but it seems strange that you haven't even had any contact.

Very sorry to hear your dad is so poorly. flowers

Katymac Wed 06-Jan-16 10:41:46

I rang again this morning & she's out & may ring me back this afternoon

Katymac Wed 06-Jan-16 10:42:06


Thanks rogue

rogueantimatter Wed 06-Jan-16 12:28:24

I think she will.

Best wishes to you and your dad.

Blue2014 Wed 06-Jan-16 12:40:19

The McMillan nurse we had came very rarely but coordinated things in the back ground. We did have to chase her quite a lot in the early stages though

Katymac Wed 06-Jan-16 13:12:33

My mu has (foolishly IMO) cancelled the oncology appt on Friday as she can't get him there
Apparently in our area co-ordinating that is the responsibility of the Macmillian nurse

louisaglasson Wed 06-Jan-16 13:16:13

She needs to phone the Oncology unit (or maybe you could?) as I'm sure they'd be able to arrange transport for him if she can't get him there. He can't not go to it.

derxa Wed 06-Jan-16 13:16:26

She was hopeless in my dad's case, sorry.

Katymac Wed 06-Jan-16 13:21:12

The hospital can only do cars - they can't do getting him out of bed & downstairs sadly

louisaglasson Wed 06-Jan-16 13:52:41

I'm not sure if that's right. Have you rung the Patient Transport Service yourself to ask them what alternatives there are? Or the GP surgery? He won't be the first patient in this position and there is transport that is not by car as some people will need ambulance transport.

Blue2014 Wed 06-Jan-16 14:09:38

If (and sorry to be so direct asking this) his diagnosis is terminal ask for an end of life social worker - ours was brilliant in arranging carers to help my mum out

Katymac Wed 06-Jan-16 14:15:15

Thanks Blue - I think that's why he needs to go to the appointment on Friday

We are only assuming that the tumour/growth has come back by his recurrence of the symptoms - I suppose it could be a series of strokes

Katymac Wed 06-Jan-16 14:35:19

The GP has confirmed this is it & asked if he wants to go to hospital or not

No point to have the appt on Friday

Blue2014 Wed 06-Jan-16 14:50:38

I'm sorry things are so hard Katy thanks I know how hard all this can be

louisaglasson Wed 06-Jan-16 15:03:03

Oh ok. Hope they manage to get some support.

ApplesinmyPocket Wed 06-Jan-16 15:45:20

So sorry, Katy. I hope some help is soon put in place; poor Dad, Mum, and you. flowers

Katymac Wed 06-Jan-16 15:46:38

Funnily enough the MacMillian Nurse rang 20 minutes after the Doctor left the house

She is coming tomorrow to sort out a hospital bed & carers

ImperialBlether Wed 06-Jan-16 15:48:58

My dad has lung cancer and has a MacMillan nurse. It was arranged through the specialist nurse at the hospital - he was absolutely great at organising everything. The MacMillan nurse comes out every three weeks now - when he really wasn't well she came out weekly, but would come out more frequently, too, if he needed it. She's arranged a Marie Curie nurse to come out for a few nights when he wasn't well and we were worried about him falling in the night if he went to the bathroom. She also will push along the district nurse and the doctor if necessary. I'm appalled your dad has had such poor treatment and think you should be making a complaint.

Whatevva Wed 06-Jan-16 15:55:02

The Macmillian nurse for FIL was nowhere to be seen and the district nurses filled the gap admirably. They had a fund that we gave some of the money from the funeral to.

When MIL was ill, there was a Macmillan nurse this time - he came 3 times, adjusted the morphine dose (this needed doing by every doctor etc that saw her anyway) then went off sick and we never saw him or anyone else again. The district nurses were good though, came in every night to put her to bed and change her patch, and got equipment in. MIL sorted most things out herself, with help from DH.

Katymac Wed 06-Jan-16 17:27:48

I imagine we will be too busy with hosital beds & carers to worry too much about what came before

Katymac Thu 07-Jan-16 08:37:19

She should be there before 9

gruffaloshmuffalo Thu 07-Jan-16 08:46:44

Katy I'm sorry you're going through all this. I don't have experience of Macmillon, but wanted to let you know I cared

Chopchopbusybusy Thu 07-Jan-16 09:09:42

I wasn't impressed by the Macmillan nurses when my Mum had cancer. I lived 450 miles from my Mum and although I spent as much time with her as possible after her diagnosis I couldn't be there all the time. I think the Macmillan nurse visited twice and I'm not sure she arranged anything. Fortunately, my mum was the sort of person who asked for help from other places. GP, district nurse and was sent ambulance transport for hospital appointments as she was in a wheelchair.
Sorry you're going through this flowers

Katymac Thu 07-Jan-16 10:44:45

OK apparently the NHS are going to move all the furniture so we can fit a bad in the dining I guess DH & I will go up this weekend and move it all wink

Thanks guys - but don't sympathise too much or I'll have a break down

My mum is seeing if we can find some curtains to match her lounge ones to put across the conservatory door to give him warmth & privacy

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