Qualifying for hospice

[Guineapiggiesmalls]

I’ve posted on other threads regarding my lovely mum and her horrible battle with lung cancer and now a high grade brain tumour. We’ve been doing her care at home for the last 9 weeks and are struggling badly. She gets one visit from carer a day (15 minutes) but needs someone where at all times as she was extremely unsteady on her feet, unable to prepare food or take her various medications.

In the last week, she has stopped eating altogether. This has made her even weaker. GP was out today and said he estimated she had potentially weeks, not months, but would expect her to see next week. I’m not coping. She can no longer walk or move from bed to wheelchair. I requested a referral to hospice, and have been told they have a ‘bed discussion’ tomorrow morning, but that there are spaces and will let me know.

I’m now terrified mum isn’t ill ‘enough’ for hospice, despite not being able to communicate, becoming incontinent and immobile and having weeks to live. Can anyone shed any light? Am I able to argue if she’s denied? I know I’ll find out soon enough but am so so scared I’m going to have more weeks of this living hell.

Palliative care doctor here:

It's pretty rare for most hospices to get referrals from GPs. The vast majority of referrals will come from the community palliative care team/hospital palliative care team. Not wishing to disrespect any GPs reading, but I would question why a patient needed in-patient specialist palliative care if they hadn't already needed community palliative care. Is your DM known to a community palliative care nurse? They are your key contact.

UK hospices are set up on a 2 week admission model. This isn't hard and fast, in that you don't get kicked out on day 14, but after 2 weeks they are usually thinking about could this care be delivered somewhere else eg back at home with a better care package or in a care home. For some patients the answer is no it couldn't and that is fine but it will be continuously reviewed.

Carer breakdown is an absolutely valid reason for hospice admission. And it is very rare for us to find that it is simply a care issue, there are usually symptoms that aren't being managed as well.

Having said that, hospices in the UK are massively underfunded. They have limited beds, limited staff and so can't admit patients 24/7 like a hospital does. It's common to have to wait a few days for a bed to come up.

From the information you have given this is a very typical hospice admission. If you don't get a bed tomorrow, keep pestering your community palliative care nurse. The waiting list to come is in order of priority, not whose name is next on the list.

Thank you - I really appreciate that.

My mum has been under care of hospice, although I’d say this is in name only really since she came home from hospital 9 weeks ago. The specialist hospice nurse for the area has come in around 3/4 times but it’s been mainly for a chat. However we are definitely known to her, and hopefully this is a good thing. The two week admission also ties in with the GP’s prognosis, and my mum has been taken off all medication, other than steroids and anti-seizure.

Can you get any support from Marie Curie? We had excellent care and support from them for our daughter. Literally could not have managed without them.
Towards the end a Marie Curie carer came every night as we didn’t trust the carers at night. We would have had no sleep otherwise.
We also had a mix of hospice nurses,district nurses and carers 4 times a day.
So sorry you are going through this.

Sorry in addition to a Palliative care consultant and GP visits

Funding for Marie Curie is wildly variable across the country.

In some areas there are local providers of night sits not Marie Curie. In some areas there is Marie Curie. Both of these are usually very limited and it's never clear to me how you get the golden ticket - some people will get loads of sits for months and other nothing at all.

And in other areas there is absolutely nothing. It's depressing it is this much of a lottery.

Again it is your community palliative care nurse who will know what is available locally. 3-4 visits in 9 weeks is actually a lot and suggests she is very intensively monitoring the situation.

Apologies @AnnaMagnani i didn’t mean to appear ungrateful for the hospice nurse visits. In general, we have had precious little support and I’ve perhaps unfairly lumped her in with that,

There isn’t any Marie Curie in our area unfortunately. I’m glad you had such a supportive experience with you daughter @24Dogcuddler When my mum was discharged I was led to believe we too would have support but it’s taken 9 weeks to get the care package increased from 1 to 2 daily visits, and there is no mention at all of night support. To say we’re on our knees is an understatement, I’ve two young children and live 50 miles away and feel like I’m giving either part of my family the attention they deserve.

Is your care package Fast track CHC? They almost never fund night care. It can happen but their concept of a need for nightcare will likely be very different and it usually involves having a professional being prepared to have a massive fight with them.

However it should just be a phone call to get a care package increased from 1 visit to 2 with CHC.

Fingers crossed for you today.

Hi I was in the same situation a few years ago. We actually had carers in 3 times a day for the last 2 weeks - I would definitely try to get this increased Sadly there were no spaces at the local hospice but the pain consultant did a home visit. To be honest we did most of the care, we were promised lots of support when my husband was discharged which never materialised. The McMillan nurse was fantastic but my husband was only referred 5 days before he died but she did more in those 5 days than anyone had done in the month since he was discharged from hospital .
Wishing you all the best

Unfortunately people especially hospital staff (and the Macmillan adverts) will give you the impression that you will have loads of support.

When the reality is the standard is max 4x a day care, you are endlessly running around to pharmacies, shopping for bits and pieces, phoning the district nurses, wondering if you are supposed to give this medication now or later and so on and so forth.

Marie Curie is a brilliant service but availability is so limited - have seen them fundraising in a town where I knew full well they provided no service at all.

Similarly Macmillan gives off a vibe that they will do 'everything' - reality is you or care assistants (and mainly you) will be doing the hands on care, accessibility of community palliative care is very variable and loads isn't Macmillan anyway.

My experience is support is usually there, but it may not be what you actually want, and you need to know who to ring to get it.

We got a bed. It’s not ideal distance-wise, but I think/hope it’s the right decision for my mum. I’m very relieved to have the hands-on care handled by a professional so I can focus on being a good daughter now

I give regularly to my dad's local hospice as my mum died in there and when I win the lottery I will set up funding for it.
My mum was lucky enough to get into this hospice when she had leptomeningeal disease...a horrible situation. My dad had been a volunteer driver with the hospice for 20 years after he retired so it was a very special place to him.

Community palliative care can work well...I was a GP and did lots and felt it was one of the most important things I ever did.

My first husband actually went into a hospice for 2 weeks to get stabilised then home for his final 2 weeks.

I wish you well OP.

So glad you got a bed @Guineapiggiesmalls

Very glad to read your mum has got a bed, I was so glad and relieved when my dad was admitted, it made such a difference to the rest of us and we could just enjoy the time we had left together with so many of the smaller worries taken care of by the hospice. I'll always be grateful to them for that. As it turned out he only had 48 hours, so please make the most of every minute xx

I'm pleased you've got a bed for your mum - don't forget to look after yourself as well
Sending you best wishes