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Original poster

Private nursing as Macmillan not as helpful as hoped...

63 replies

Anonymum40 · 25/04/2019 19:27

We found out only last week that my dear old dad has leukaemia and only weeks to live. He wants to stay at home as long as possible - and ideally die there too. We've been warned that with his impaired immunity he would very likely die very quickly from picking up an infection in hospital.

My mum is looking after him but she is 80 and getting exhausted. My sister and I are visiting on alternate days to make sure they are coping, but we had great hopes for Macmillan. We had to wait a week for a nurse to visit and now she's been we have to wait another week for her to come again which isn't quite what we had hoped for. She apparently has 45 other patients to tend to.

So, any recommendations for private nursing organisations? And what is their scope? And what do they cost? All advice very gratefully received... thanks x

OP posts:
Prequelle · 25/04/2019 19:29

Hello OP, I'm really really sorry you're going through this.

First of all what is it you want from the nurses or healthcare workers? What sort of support are you looking for? That will help people direct you

JoyceDivision · 25/04/2019 19:31

Have the district nurses been in touch? A terminally ill patient has a lump sum of funding attached to them and beds, care, washing etc is all under this.

Ring your GP / nursing team asap to get them out to start this if not in place, when my dad was in similar situation we never involved Macmillan as they were crap.

wigglypiggly · 25/04/2019 19:32

Sorry to hear.his is unwell. I would ask his gp.to assess him for fast track funding as you may not have to pay for a carer or nurse. He may well need carers coming in every day, hospital type equipment. What does the Macmillan nurse.have to do. Marie curie have a very helpful website.

Prequelle · 25/04/2019 19:33

I'm not sure what you were told about Macmillan nurses if you're disappointed but they're not really there to provide direct care. They're practically experts in advising, supporting and making recommendations for cancer care. They're a supportive and advisory role as far as I'm aware. There would be little need for them to come more often than once a week unless there was a dramatic change in condition.

Prequelle · 25/04/2019 19:34

OP your Macmillan nurse should be able to help with all this, they have so many links in the community and if your mum is struggling with providing care your father should be entitled to visits from care assistants

Original poster
Anonymum40 · 25/04/2019 19:35

Well, I'm confused as the local palliative care nurses that operate out of the local hospice are also the Macmillan nurses. The district nurse has offered to visit but hasn't so far.

I was hoping there would be more structured care so my mum feels supported in looking after him. I'd heard about local hospices offering support groups and counselling for the partners/widows of the dying. But there has been no mention of that.

OP posts:
FadedRed · 25/04/2019 19:36

As wigglypiggly said, contact Marie Curie Nurses, they are the ones that can give respite care at home, and are trained in caring for this type of patient. McMillan is about advice and signposting, not physical care.

acomingin · 25/04/2019 19:36

See if you can find a Marie Curie nurse in your area. They are the experts.

wigglypiggly · 25/04/2019 19:37

You may be better.with generalist palliative care district nurses or there maybe a hospice home service near them.

Pegsinarow · 25/04/2019 19:39

Sorry you are going through this op Flowers

Macmillan nurses were utterly useless in helping my 85 yr old mother with my late father's care. In fact, she had to set about making them cups of tea!

wigglypiggly · 25/04/2019 19:41

Op where in the country are they,.am happy to.see what is available

Prequelle · 25/04/2019 19:42

I think sometimes it's confusing as to who is who and who's supposed to do what especially as everyone seems to come under the 'nurse' umbrella so people get visions of hand on care. OP would you be comfortable in providing your location and we might be able to find some groups for you?

Either way this sort of stuff is supposed to be a Macmillan Nurses bread and butter, it's them who can advise you on what support is available Flowers

dazzlingdeborahrose · 25/04/2019 19:43

Please speak to your gp for a referral to Marie curie nurses. They are amazing. They provide palliative nursing care in the home.

RosaWaiting · 25/04/2019 19:43

I am not an expert OP, not by any stretch - this was only something I had to look at vaguely.

My impression was that if we were going to do it, then a private nurse would have to be engaged and MacMillan would pop by to help. I contacted 3 agencies and costs varied widely, I apologise but I can't remember figures. I do remember that one in particular said they would not help patients with stairs so dad would have to sleep downstairs.

Dad went to a hospice in the end and from the accounts I gathered, this was much better. Is this a possibility here?

I feel for you all, I really do Flowers

Innernutshell · 25/04/2019 19:43

You may be able to self refer to your closest hospice to gain support for your Mum & Dad.

Contact his GP too and ask to be referred to the Community nursing team.

Macmillan do have an amazing free helpline.

HollowTalk · 25/04/2019 19:46

I'm so sorry you've all had such bad news. We were in this position three years ago.

You can apply for financial support for your parents now, OP. My parents used the money to pay for someone to clean and do the garden. Here is the information on it.

I agree that the Macmillan Nurses should be able to advise on nursing care.

Original poster
Anonymum40 · 25/04/2019 19:47

Right, thank you everyone. I will get in touch with MC tomorrow. My parents are in Woking in Surrey.
At present dad is on the GPs radar, and the district nurse. But as I said the only other help is this nurse from the local hospice who seems to be massively overstretched.

OP posts:
Sunshinegirl82 · 25/04/2019 19:49

I'm sorry you're all going through this.

Have you tried contacting the Woking and Sam Beare Hospice? I understand they have a community care option.

Jaxhog · 25/04/2019 19:51

Good luck. We found them to be utterly useless when my Mum needed help. They had lots of advice and were very sympathetic but didn't give her what she really needed - actual nursing respite care for my Dad.

Wish we'd known about Maris Curie nurses, as they sound a lot better.

Original poster
Anonymum40 · 25/04/2019 19:52

Hey Sunshine, yes that's where our palliative care nurse comes from. She's also funded by Macmillan as far as I can gather, so hence is one and the same thing apparently!

OP posts:
Fairylea · 25/04/2019 19:54

I’m sorry you’re going through this.

I’ve just been through this with my mum who had terminal bowel cancer. She was referred for continuing care through her gp. They came out and assessed her and put carers in place 3 times a day - this was through Norfolk council. It might be worth ringing your local council directly and see if they have some sort of care package offer as well as speaking to the Gp.

As mums illness progressed we contacted the local hospice and she had the palliative care team come out from there to assess her and provide equipment (padded bed for bed sores etc) and other help.

Mum wanted to stay at home but as her illness progressed she found she just wasn’t able to cope - the carers only came for 15 mins a time and it didn’t give her long enough to use the commode next to her bed, eat and have a wash etc. It just wasn’t enough even with me helping. So in the end she actually asked to go into a hospice - something she never thought she would do. So keep an open mind. This may happen.

Mum owned her house outright but hospice care is provided free of charge under the NHS under continuing care (in our area anyway, I think it is the same everywhere) so once she had been assessed as needing hospice / palliative care she didn’t need to pay anything.

I hope you are able to get some proper care sorted.

scater · 25/04/2019 19:55

I think that you are getting well meaning advice from lots of people that may not be correct.

Your Macmillan nurse is probably from the local hospice so not actually from Macmillan. Likewise, I don't believe that Marie curie cover that area.

If you haven't found the community nurse helpful - speak directly to the hospice and ask for a manager (tell them you want support for the family too - they will have a family support team). speak to your GP or you can contact your local community health trust in terms of any hands on care your dad needs - he should be assessed for CHC if there are physical needs.

It is crap and I'm sorry you are having to deal with this along with your dad dying.

My hope would be that if you speak to the hospice and say you are struggling, they will sort it all out for you, but if they don't then the GP should.
Sending love to all of your family.

Prequelle · 25/04/2019 19:56

actual nursing respite care for my Dad

That isn't what they are for AFAIK, but they should have connected you to the people who could help you access that. It's really unfair how drastically services differ.

Hairynick · 25/04/2019 19:56

All cancer nurses McMillan/accord etc were shit all use when mum was dying. Social work got us home care and district nurses were amazing!!