Anyone know how Macmillan Nurses work?

[policywonk]

My mother (who has lung cancer) is in quite a lot of pain at the moment. My dad has spoken to the Macmillan nurse consultant (? not sure whether that job title is quite right) at Charing Cross, where mam is being treated, and has been told that the Macmillan nrses cannot prescribe pain relief, they can only recommend - is this right? If my dad called out Macmillan nurses on a weekend, would they come to my parents' home to assess my mother or would they tell her to go to hospital?

Mam has had an appointment with a neuropath (I think?), who suggested a few different pain killers, but her consultant ruled most of them out for reasons that aren't clear to us.

Does anyone know how to go about getting effective pain relief quickly in this situation?

Sorry I can't help on the Macmillan question but have you called your mum's GP surgery? That should direct you to the Out of Hours service.

Sorry she is in such pain

As I understand it, they would come and assess the situation and then they can advise you on what the best course of action is. If she wants to remain at home then I think they would probably call a doctor out who could prescribe pain relief.

Really sorry to hear about your mum PW.

Thank you trib, I'm sure that would be sensible - I'll tell my dad.

I am interested in finding out about Mac nurses though, if anyone knows...?

Thank you ranting. Yes, it is all completely shite.

They would come out on a weekend then? Do they come out at the drop of a hat (for someone obviously in pain), or do you need an appointment/prior arrangement?

My aunt had them in when my uncle had cancer and they provided support for the family aswell as for the sufferer. Advice and help iirc.

Am trying to get hold of Aunt but think she's working, I'll try and get you an answer. Have found the cancerline no. which is 0808 808 2020, found it on the Macmillan nurses website. Might be worth ringing them to see what they say.

OJ has a AMcmillan Nurse, maybe find her?

FWIW individual contracts are drawn up by the NHS policies of the trust they work for- in conjunction with amcmillan (used to be a fundraiswr for them), the idea being that af6ter X years (3 in oura rea) the NHS then takes over the funding of the post- macmillan as a facillitator, iyswim.

Macmillan has an excellent website here and also ir emember cancer bacup as being praised a lot- [http://www.cancerbackup.org.uk/Home here]], I really hope one can help

thank you dear.

My OP was badly worded in that it sounds as though she is in unbearable pain right now, which isn't really the case - she's very uncomfortable but is dealing with it OK. I just want to know what to do when things get worse, rather than us all running around cluelessly.

last post to ranting although Peachy is also a dear of course. That's interesting info about the funding Peachy.

Will call the numbers and look at the sites - thanks.

I dont think the info line for Macmillan operates at weekends but tehy have a chat board where you could probably get lots of info, and maybe call Monday?

I'm a bit shy of other chat boards

But I guess this is as good a cause as any... You're right, that's probably the quickest way to get informed info on this.

Aunt said she thinks it's changed since they used them but, when uncle was given diagnosis they gave her the info for McNs. She arranged for them to come over 4 days a week and more often as the cancer progressed.
HTH

Thank you ranting (and your aunt). Did your uncle survive?

I hesitate to say but no, it was quite a while ago. But my aunt has always been incredibly grateful for the help and support she had from the mac nurses.

Sorry to hear that. Don't worry about upsetting me on that score - we've been incredibly lucky that mam has survived as long as she has (more than five years since her diagnosis, and she already had metastases then). We know that there is only one way that this will end, realistically - it's just a question of staving it off for as long as possible with as little discomfort as possible.

I had heard that palliative care/pain management had been disrupted quite badly since the Shipman horror was uncovered, because doctors are now more reluctant to prescribe diamorphine. That's one of the things I'm wondering about I suppose. As Peachy say, specialist sites will probably have the answers.

I think that strictly speaking the MMN can't prescribe. However, in our experience our wonderful Nurse Lynn,phones the doctors surgety, tells the GP what is required and we get the prescription.

She has also referd us to the Hospice when she and the GP didn't feel they could cope with things for DH on their own.

Hospice were fantastic, Dh is now out, and back to working part time.

the MMNuses come to the home, and talk to the whole family, if this is what the patient wants.

Ours has refered our kids for councelling as well.

they are fantastic people and just what your Man needs at the monet

re out of hours. Once you are linked up to the MMNusrs you will be given a green card, which will get you the out of hours district nursing staff (also excellent btw) to copme out. these would come and sort out dh's morphine driver, for example, and did so on Xmas day.

Wonderful people.

Thank you mb. It's great to hear that your DH is doing so well, you must be chuffed.

Have you/DH had appointments with pain managers at your hospital (other than Mac nurses)? The advice mam and dad got from their appointment seemed pretty cursory, and most of the suggested drugs (only about three were mentioned) were disounted by the consultant.

Should we just assume that hospital staff are not very well versed in pain management and stick to Mac nurses/GP/hospice staff? (In your opinion, obviously.)

mam isn't on morphine yet - she's keen to keep it in reserve, a 'drug of last resort'.

She's on Lyrica, which seems to be becoming ineffective now, plus an anti-convulsant that also works as a pain-reliever (begins with 't', can't remember name).

I think one of the things I'm wondering is whether there just aren't too many options if you don't want morphine yet.

Hospitals concentrate on trying to cure

Hospices/mmn are the experts on paliative care....not just pain relief, but general symptom control....constipation because of the pain meds, dry moth, nerve pain, nausea.

they are the guys.

And don't be frigtened by the word 'hospice'

They got dh back on his feel, weve just spent the afternoon in Ikea(god help us!). 6 weeks before xmas, before the hospice sorted him out he was basically 'on hold' for death (I shit you not)

Bollocks to morphine being the 'last resort. dh has been on opiated for the last year!

this is why the hospice people are so great, they use the stuff properly

Dh isn't stoned, he is pain free

That's very interesting mb. I will try to convey it to mam.

Does your DH find that he needs more morphine as time goes on, or is this what you mean about hospices using it properly?

Mam is frightened about the idea of going into a hospice i think - not so much because she thinks it means instant death, but because she doesn't want to be away from home and be nursed by other people. however, if I can convince her and dad that it would get her much more comfortable (she has also been very nauseous and sick), I might be in with a chance.

Sorry about delay, had to pick up dd from sleepover!

Tell her about dh. in Dec 2006 he was given 3-6 months to live. He is still with us, he still manages to go into work for 2 hours at a time.

Hospices are not just for dying. they are also all about making the remaining time better, and good paliative care also prolongs life.

Dh has pancreatic cancer, it is a real bastard. dh is pain free...and he has secondaries all over the place. He is also on some second line chemo which seems to be working. Consequently he is reducing his does of opiates.

Dosages can go up as needed, and the thing to remember is that if a patient is in a lot of pain, then higher doses don't cause an OD as they would in a person not in that level of pain. They titrate the dose to the level of pain the patien is in.

I might be going mad here but I reckon Lyrica is methadone, i.e. a morphine equivalent anyway. My dh was on morphine for 18 months - not recommending it, but he isn't terminal.

Don't worry about Shipman. A conscientious GP will want to inform his/her PCT that he/she is prescribing controlled drugs and why, this simply saves them the trouble of investigating it later.