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

[Anonymum40]

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 I remember researching on here at the time and tbh, the experiences of hospice care at home weren't positive on here, as well as the few ones I knew of in real life.

also I remember getting a lot of "advice" about how to pay for things. I appreciate this makes us very lucky, but we were in a position to pay for private nursing care and effectively delayed it while numerous agencies faffed about looking for other information.

I'm just saying because I remember dad saying "hold off getting a nurse in till we hear from the experts" and it turned out they had no information at all really. He just needed nursing care.

in the end, the lack of clarity over what would happen with pain relief made me push for a hospice place.

<a class="break-all" href="https://www.wsbhospices.co.uk/care-and-support/what-we-do/care-in-your-home/www.mariecurie.org.uk/help/nursing-services/get-marie-curie-nurse" rel="nofollow" target="_blank">www.wsbhospices.co.uk/care-and-support/what-we-do/care-in-your-home/www.mariecurie.org.uk/help/nursing-services/get-marie-curie-nurse

www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/

Op, all our dads care was via district nurses and as required at home gp visits.

Please get in touch with them as it may be them that can then coordinate care packages for your dad x

Assuming it’s washing/dressing/ toileting/ meds/ food prep that you would like someone to do for your dad instead of your mum having to do it all? You need to call adult social care and request an urgent assessment. Social worker can put in a package of care and refer to chc if appropriate for fast track. All the best.

Well, I'm confused as the local palliative care nurses that operate out of the local hospice are also the Macmillan nurses

These are likely macmillan branded but NHS trained and funded. It’s a fundraising technique we won’t go into. McMillan funded nurses as above provide information on things like money, not nursing care. They were utterly useless in our case, we had to ban them from coming in the end as they were just causing upset.

As pp have said it’s Marie Curie that provide end of life care at home. Be warned thought they are very stretched, they had to choose between us and a 14 year old boy the night my aunt died. Fortunately my uncle is very matter of fact with it all and was able to cope.

If he wants to die at home i would ask yourself and your family if you can do the nursing care. In our case it was a matter of keeping on top of the pain meds, and as she was terminal anyway we gave enough to manage pain without worrying if it was too much, too little etc. Medically there isn’t much else. Ask the MC nurses about the process and how to deal with it if they can’t come.

Good luck. I hope your dad gets the peaceful end he wants.

Gah, seemingly no Marie Curie nurses in the area either. Looks like we may have to go private...

OP if you detail what you need we will be able to help you a bit better. You shouldn't have to go private

You won’t have to go private - just follow the posts above and contact the GP / district nurses / council and push for care at home. You may need to ring all of them and really shout for it! I did with mum.

MIL was under positive care and was under the Palliative team from Pricess Alice in Leatherhead. She was given the terminal illness funding to commission their own caring at home, such the hospice coordinated.

You really need to meet with the palliative care team which should be multi agency including social care/council. Once he had been signed off as terminally ill it opens many doors. My DM was sent home from hospice with number for hospice at home so at the end her DH could ring for drs to come at home to administer meds to sedate her which was much nicer/kinder for everyone.

So sorry to hear about your dad, hope you get things sorted soon x

Thank you all so much for the advice, I'll start phoning round tmrw. It's horrible as it's soon going to be the weekend again and at the moment I feel like we have to hold our breaths till Monday worrying that something is going to go wrong and there will be no one to ring.

Hospice at home were absolutely wonderful when a relative died at home recently. They obtained equipment, sorted medication, GP visits, washed, turned and would have spent the night if needed. They were so caring too.

However it was an unusual circumstance where we knew that the person would die within a very few days. It may be more difficult to obtain such intensive support when the timescale is less certain.

We have just entered a similar situation with dm. Her specialist put in a request to the hospice outreach team who are now her main contact for all support. They also contacted the gp for district nurse support.

Could you approach his consultant and ask for them to do the necessary referal across the multi disciplinary team. It shouldn't take long at all

McMillan funded nurses as above provide information on things like money, not nursing care.

So why are they calling themselves Nurses then? This is what is so misleading. We also went the Hospice route, with mixed success.

Macmillan do provide specialist palliative care nurses and they are often attached to the local hospice however funding has dramatically decreased in recent years - all hospices are charities after all.

My local hospice didn't have enough money to keep going and had to make their Macmillan nurses redundant.

If possible OP please try and get your Dad to consider requesting some respite care in the Hospice once you are connected to them. Assuming they have a bed free this will give your mum a break but also offer the opportunity for the specialists there to review his medication and to get to know him more which always helps.

Sometimes respite is just for a few days and then he should be able to return home more comfortable.

Early referral usually means more comfort & support as well as longer end of life time.

Thinking of you & your family during these difficult times.

So why are they calling themselves Nurses then? This is what is so misleading. We also went the Hospice route, with mixed success

Because they are registered nurses and there's more to nursing than providing hands on care. There's plenty of nurses that don't, research nurses, nurse managers, some types of specialist nurses are advisory only etc

OP please ask your GP for another urgent referral to the district nurses. If they haven't seen your dad yet I can only guess it's because they don't realise he is in the last few weeks of his life. They will be able to support you.

Is he symptomatic? Having pain? Nausea? Is he eating and drinking? Who is managing his medication? Does he have the equipment he needs at home? Does he have emergency medicines? These are the things they will look at.

Also, what physical care needs does he have? What is your mum doing for him? He may need a package of care to support him. He can be fast tracked for this for continuing health care funding. Ask his GP to do a fast track assessment if you think it is needed.

Best of luck and I'm so sorry to hear about your dad. Hope you can all get the support you need.

As far as I understand, Macmillan provide funding for nurses for 2 years. After the 2 year period the funding from Macmillan stops but the nurses must continue to be called "Macmillan" nurses, even if the funding hasn't come from Macmillan for many years.
I hope you manage to arrange some palliative support. I echo what others have said about Social services. They should provide a package of care, which may be dependent on what Home Care agencies are available in your area.

As far as I understand, Macmillan provide funding for nurses for 2 years. After the 2 year period the funding from Macmillan stops but the nurses must continue to be called "Macmillan" nurses, even if the funding hasn't come from Macmillan for many years

This. Many people then go on to fundraise for macmillan after receiving hospice care, believing they are “macmillan” nurses when actually they are hospice nurses, hospice funded.

It’s a fundraising tactic. Not a particularly nice one as it intentionally diverts funds from other charities to Macmillan.

I always donate to hospices directly.

I've chased everyone and been reassured by the district nurses that they will orchestrate everything as and when it's needed. Including the NHS funded Continuity Health Care which means he'll have carers coming in.

In the meantime they've already installed a sharps bin for when he has to have his medication intravenously and there's talk of a hospital bed in the dining room. I find all this terrifying. I'm not sure my mum had imagined this when she thought he'd die at home either...

It's suddenly all got very real and I feel really wobbly.

Are you ok Anonymum?

I understand certain changes really bring home what is happening. I've been in a similar position and when big steps / changes happened, eg the bed, we tried to not wait until things had got bad / really progressed and instead looked at changes as bring helpful.

It's hard to describe, but for example, we chatted to dad that we wanted him to have the bed earlier than what he thought he needed it as we watched him struggle walking upstairs and were concerned he'd fall, so we all agreed it was the right thing to move on to.

We found it helped not try and push the bed in a corner of the room, instead it was like the main piece of furniture, there was no avoiding what was happening or pretending it wasn't happening.

Dad remained in the middle of family life right up to the endand that helped us immensely.

Feel free to post or pm if you have a wobble

Thank you so much for your response Joyce. I'd been having a wobbly morning but ended up reading it on my phone whilst on an emergency dash over to my dad as my mum said he was having a really bad morning. I couldn't reply then but it made me feel so much better,

I spoke to my mum about the prospect of a hospital bed in the dining room and she was a bit horrified. She hopes he will stay at home as long as possible but things will end in a hospice. Which is what I hope too. I just need to make the district nurse realise that now.

Ugh, in the meantime, one day at a time... it's so exhausting.

It is exhausting, however we found the district nurses brilliant, very practical, hands on, commonsense...they have seen this situation, and the many variations it brings, and are able assesshow to help, what decisions might need to be made.

My dad died at home,and it was due to the pain relief being extremely well managed by the nurses and the gp who came to do home visits (also by the 100ml morphine that went over 3nights that dad couldn't believe he' used,and so his medication was upped accordingly so it was always in front of his pain, if you see what I mean, rather than catching up with his pain. Except after daddies we found the100ml bottle in a cupboard mum had put it in a safe place!! At least it meant pain relief had been well upped!!)

The availability of a syringe driver to dispense the "big drug"in dad's last few days meant everything was easily covered by nurses at home.

Hope everything goes well for you all and your dad has a peaceful and dignified death that brings comfort to you all.

Plus, you're facing a huge change for your family with the impending lots of your dad and it may feel as though you're being between feeling over whelmed with what you are all about to go through, and then almost feeling disloyal if you decide to be organised and get prepared for what you are all going to go through, as though you should be too grief-stricken to be able to face practicalities, yet flip side to this is feeling it's your duty to get things sorted and be a support to your dad.

I don't think either choice is the 'right' one