End of life / hospice care experience / advice

[WhoSaidWhat123]

Hi,

Does anyone have any experience of a close relative who received end of life care / hospice care?

Backstory - my Grandad was found to have a tumour in his throat. Unable to operate so he was given 2 weeks of daily radiotherapy to try and make him a bit more comfortable.

Anyway, my Mum has fought with his GP for pain medication, they gave him co-codamol
tablets (even though she told them he couldn’t swallow much). Then they prescribed soluble co-codamol.
My Mum has fought them for nutritional supplements as he isn’t eating and there’s been some issues there by the GP practice.

He has been collapsing and is basically skin and bones now, when my Mum asked for a GP appointment they told her to bring him in, she explained he isn’t well at all. I think a GP
is now scheduled to go there tomorrow or Wednesday.

What I am confused about is, I thought when someone is at the end of life stage, shouldn’t there be a care plan in place? Aren’t community nursers going around to see such patients and providing medication and advice etc. so that the person is able to die at home with dignity? Since the hospitals are also overstretched, you would think if someone is happy to go at home, then the support is there so they don’t suffer?! And I mean support as in the appropriate medication and advice?

Any help or info would be appreciated? Just so I have some knowledge before I try and help my Mum with sorting things out for my Grandad.

Our experience was that we had to take our family member to a&e where they were quickly admitted luckily and moved to a hospice 3 days later as we knew we couldn’t meet their needs at home; at home we didn’t have the pain medication my family member needed or the equipment to keep them comfortable.
The hospice meant that we could focus on spending the last time with our family member rather than all the medication and care needs. This happened over a bank holiday so we had no choice but to go to a&e, not sure how it’d have played out with the GP

Sorry he is being treated like this. he could easily have some liquid morphine or pain killer patches to help with the pain. I would ask the GP for a referral to the community palliative care nurse or team. To be honest it sounds here like the GP surgery have been spectacularly rubbish at putting a plan in place and your mum needs to be firm.

@Cbljgdpk my Grandad doesn’t want to stay in hospital or anywhere else other than home unfortunately. And we live rurally with so few care homes within 30 miles.

My Grandmother received care at home but it was paid for privately, she had Alzheimer's so not necessarily end of life. I’m under the impression that end of life care is free (from a quick browse online), is that true in your experience with the hospice?

I’m glad things were arrange quickly for your relative.

You could approach Social Services for an assessment of needs. They should do this urgently - an assessment for your grandad and a carers assessment for your Mum.
ALSO. Is your Grandad over retirement age? If so he is entitled to Attendance Allowance. The GP should be able to do this but if he’s not helpful you can get the forms online. Or phone and ask for form to be sent. You can complete the form yourself it’s quite straightforward. The GP should then be asked to sign it under “Special Rules”. This means that the form should be given priority due to grandads diagnosis.
You could also get in touch with the District Nurses. Reception at Grandads GP will have the number.
Hope you can get some help with care.
Take care and feel free to contact me if you need further help.

I have been asking my Mum to push for Oramorph or patches. I have worked in a care home previously so I have some experience of what community nurses do when someone is end of life. Which I assumed is the same in someone’s private home.

I do agree, it is definitely down to the GP practice being awful. I’m going to intervene and visit the practice tomorrow and ask them what is the standard practice for end of life etc. the more knowledge I can build before I go the better so this is helpful thanks.

@Froniga

thanks, this is very helpful. I am going to pop in tomorrow to the GP. They may not give me answers as they are awful (I actually left this practice for another years ago because of how awful the receptionists are!) They can be quite horrid and unhelpful so the more I know of what to ask, and what is the standard practice, the better.

I did tell my Mum that they owe them a duty of care and they shouldn’t be left to “fend for themselves”.

The GP should make an urgent referral to the palliative care team. They will do a home visit and assess his needs x

you will need to be very firm that the appointment should include an advanced statement and advanced decision NHS guidance for end of life care planning

excellent advice above from @Froniga also.

highly recommend Dr Kathryn Mannix’s book “with the end in mind”

I’m not sure if it’s nationwide but my DM recently had what is called Hospice at Home from Marie Curie. It was arranged through the surgery (home visit from gp). As a pp said, I think you should be asking his gp for a referral for palliative care. I’m in Wales and the care my mum received was excellent.

District nurses were on stand by and two carers came three times a day with respite care when it was available.

She was able to die peacefully at home as she wanted. I hope you can access this for your grandad.

Sorry - was slow typing and can see it’s been said.

@LakeTiticaca

thanks. I thought that this is what should have already been arranged but I will make sure it gets sorted asap.

@WalterHWhite

we are in Wales too. So thanks for all the info.

I’m going to see what I can do tomorrow, but I assume I’ll have to bring my Mum along to sort things out. My Grandad’s practice is awful, lots have left there (including my family). But I have so much useful info now I am hoping I can sort something 😊

You need the GP to urgently refer to District Nurses and Community Specialist Palliative Care.

One of these 2 (who does it varies from area to area) would then be able to apply for Fast Track CHC funding for carers, this isn't a Social Services situation.

You need to push for the palliative care team to provide hospice at how care. My mum was under a fabulous local hospice and ended up being taken in for her final few weeks....but I had to push, beg, nag to get her what she needed.

Also look at applying for attendance allowance (special circumstances to get the higher rate), it will be backdated to the date you apply if you phone for a form.

Hope you get the help you need

Another one saying he needs a referral to community palliative care. He has unmanaged symptoms and is in distress - that's what they deal with every day. Not impressed by his GP. If the receptionists are tough, be tough right back. Take a list of his symptoms and just start reading it out to them. If they say they can't help with symptoms, say yes that's why we need the doctor.

Am sorry you’re going through this, we experienced a similar horrid time of it and MacMillans phone line gave me such helpful guidance. Essentially you have to be explicit and firm in what you are asking for, it’s all very wrong and you shouldn’t have to navigate the system this way.

The GP has overall care for your Grandad, ask them to come out urgently (same day) and request a referral to the palliative team. Is your Grandad under a consultant / oncologist for the tumour, you should be able to request the palliative referral from them also I believe?

Honestly, it helped me so much by calling MacMillan and them guiding me through what to say and what should be happening.
I hope your Grandad and family get support really soon x

Hospices usually provide a hospice at home service as well as inpatient and drop in services. Some hospices accept self referrals and most you can contact directly although they may also ask for a GP, health care professional or hospital referral.

You can find your nearest hospice here: https://www.hospiceuk.org/hospice-care-finder

Does he get attendance allowance already? Just that there is a different way when someone is at end of life that doesn’t involve filling out forms if they already get it.

It doesn't sound as though the GP is being very helpful, either about medication or referral to relevant services.

Is there a hospice near you? - they usually have outreach services. And there are NHS palliative care teams to whom he can refer.

My OH had the services of the hospice outreach, both when he was at home and in a nursing home. They visited at home and then oversaw the nursing home staff's actions, and my OH died very peacefully. This can be achieved and I know you will press for this - you should not have to, but it is good that you are there representing his interests.

macmillan.org.uk can advise if you are not getting anywhere. They can tell you where to turn.

It's really not true that hospices 'usually' provide a hospice at home service. Self referral is very rare and not usually accepted without medical back up. And I've never worked anywhere with a drop in service.

And what hospice at home is varies wildly from area to area, there is no one definition of it.

The key steps now are District Nurses and Community Specialist Palliative Care.

@Mischance thank you for all the information. I’m a bit sad and angry it has come to this but I’m eager to help them asap. He has been suffering since he came back home after radiotherapy (so just over 2 weeks). My Mum has fought as much as she can, and I know how tough this GP practice is, but hopefully with the knowledge I have now I’m able to support my Mum, and my Grandad.

And sorry for your loss 💐

My stepmum is in a hospice at the moment on end of life care. She was diagnosed with two different cancers, told there was no treatment and sent home with no care plan, no support, no pain relief and no real explanation of how long she had or how she could expect things to progress. Nothing. The only thing she was given was a prescription for a hundred Ensure drinks because she couldn't swallow any food due to the huge tumour in her throat. She's 80 and had dropped to 6 stone, too weak to walk so God knows how they even expected her to collect two massive crates of drinks.

In the end her daughter just took her into A&E and insisted they find her a bed. She was moved to the hospice two days later and now she's comfortable and being looked after properly.

You don't realise just how dire primary care is until you or someone you love has an urgent need. Individual health professionals are working their arses off, but they are so underresourced and overwhelmed they just can't provide the bare minimum, and sadly it's the squeaky wheel that gets what's left of the oil.

@WhoSaidWhat123 if he has had radiotherapy then he must have a Head and Neck Cancer Specialist Nurse at his treating hospital. If you can't find a phone number, you can ring the hospital's Acute Oncology number.

They would also be able to make any necessary referrals if you are finding the GP surgery a battle.

They would also know who to refer to in your area re: nutrition - where I work all of this goes via dietitans and GPs only prescribe on their recommendations.

@sprigatito awful isn’t it? Pretty much the same here, my Grandad is pretty much skin and bones, in a matter of weeks. Unable to eat for months but his GP was awful. Finally he had a scan which is when they found the inoperable tumour. Radiotherapy done daily for 2 weeks and not much information from then on. It’s since the radiotherapy he’s wasted away. GP has been stressful, expecting him to go there for a face to face appointment when my Mum has told them he is weak and keeps collapsing. The frustrating thing is he doesn’t want to go to hospital, so obviously my Mum doesn’t want to go against his wishes. He prefers suffering in silence. But my Mum is going to come with me to the GP tomorrow and I will ask them for a referral to the palliative team and we will go from there.

Age uk can also help with forms and information.