I am fucked aren't I. Lack of palliative care means I may have to quit my job!

OP can apply for attendance allowance for her dad. It isn't worth applying for carer's allowance if you have a job. The rules are very strict and you are barely allowed to earn anything. Attendance allowance is not means tested and is tax free. The forms are long and lots of evidence is required, but OP's dad would qualify.

Did you read where he won't eat?

Sadly I suspect he wouldn’t meet the threshold for residential care just yet (not in my area anyway). I think you’d have to push for reassessment with social services to see if they’ll pay for extra carer visits and you visit when you can. Palliative and hospice care will kick in near the end. Sorry to hear you’re both going through this - it’s tough.

OP, I've nothing to suggest.
I just want to wish all the best as possible for your dad and you! I wish you both get all the help and support in need!

This . It really is sad how little support is given post hospital discharge . I think they basically just rely on “ supportive family “ taking over in most cases.

Very sorry for you and your dad OP. I moved in with a parent after an illness ( now recovered ) for 6 weeks but continued to go to work during the weekday with some time off for appointments . I just made sure breakfast / lunch was ready for them and a sibling would drop in for an hour whilst I was working . Is this something you and your dad could manage ? It’s really tough being a carer and no one appreciates how stressful it is. Xx

So sorry to hear about your situation. It's terrible.
I had the same, my mum had stage 4 cancer and was in agony and we got 0 help. I spent hours and hours begging for help but nothing. Had to look after her myself and take leave from work. I've never felt so let down by the NHS, Macmillan and all the others who I begged. I hear so many post on here and others about the support their families got and feel very bitter and angry although I know I shouldn't. I think it really depends on where you live.

Sorry if this has been suggested, but Age Concern would most likely be able to help with this. They have help 'hubs' (I noticed this when I used to live on another city) but I don't know how prevalent they are.
They offer really good advice and they are a charity.

My DF died of oesophegal cancer. I am so sorry you are going through this. Macmillian were super helpful for us and helped us navigate through. We did not have to pay for anything but I can't remember the details of how that worked; what I can remember was that we had a sequence of things that happened too late (e.g. four times a day care put in place by the time he needed night time care; night time care by the time he needed to be in a hospice). The ambulance was called out a lot, and that was what triggered the next intervention. I would go back to the GP and be really clear that he isn't eating if you aren't there. My DF did go down hill really quickly, and it was a blessing, really: and losing appetite and not eating is actually a really natural part of dying. Sending you a hand hold as you navigate this really tricky time.

This is NHS responsibility not social services.

I see OP has updated since I started my response and my observations and questions are just repeating those others have asked, so I've deleted.

If you have chc funding you should be able have a nursing home place. My dad is in relatively expensive nursing home, that does not take council funding, but they do take chc funding. It is not capped in the same way that council funding is. However, even if he is not eligible for chc funding (which it sounds like you think he is) if he has not assets he should be eligible for council funding, if he needs residential or nursing care. Not all care homes will take this, but many will. I believe chc funding can be accelerated if for end of life care too.

Does he have a social worker you can talk to? Also speak to the Macmillan nurses as someone else said. He may also be eligible for PIP or attendance allowance.

I really hope you don't have to give up your job unless you want to, there is support out there.

Ask district Nurses or GP surgery to complete fast track assessment for CHC funded care, xx

Unfortunately this is happening so often...I know due to a similar situation...firstly you need to get your Dad a social worker....they will help you get a nursing home....YOU must not give up your job life etc....a family member did this and ended up VERY ill themselves...and had a breakdown 😢

Yes in theory. My mum was very organised with her diary etc when she was approaching death. Keeping a brave face from her bed because that's what she always did.

District nurses told me she didn't qualify as she was coping fine.

We put her into private nursing home and they said they'd apply for that fast track. Anyway she lasted 2 weeks and she died. Still didn't get any funding

I have a friend who had oesophageal cancer, one of the lucky ones diagnosed early and so far doing well a couple of years down the line. They had help from OPA charity.

https://opa.org.uk

Might be worth contacting them to see if they can signpost you to help. So sorry for the situation you are in, heart breaking.

I have to say, from recent personal experience, you are not unreasonable to be concerned OP. My MIL recently died from advanced cancer and the care was very poor. Eventually she got carers in twice a day but we had to fight every step of the way, and they were barely there long enough to change her colostomy most times. The care was terribly disjointed with health care professionals and social care contradicting each other and we barely ever saw the same people twice, so we spend vast amounts of time on the phone chasing up things that one person had said would happen but the next one knew nothing about. Even getting pain relief prescribed was an uphill battle. The only option was for each of her children/children in law to take time off work in rotation and move in with her. We did eventually get her approved for continuing care but she died shortly afterwards and before a hospice bed became available. Macmillan and Marie Curie were no help either, just sent a load of leaflets, some of which did contain useful information, but we got no practical support. The family was more or less left to cope with it all ourselves. Maybe it is better in other areas, I certainly hope so, and I hope you are able to get more support than we did, but I'm afraid you might need to be prepared for a fight. Knowing what you're entitled to is one thing, but getting it can be another matter I'm afraid. Most of the people we met seemed well meaning. I'm sure their failure to follow through on what they said they'd do was mostly down to over work, not because they didn't care, but that's cold comfort when you are on the end of it and trying to care for a dying loved one.

Ask your GP to make up a weekly dosset box which will contain all his pills divided up by the time of day he has to take them, the carers can then make sure he takes his tablets. If he has to take tablets say 4 times a day but only 2 carer visits, ask GP whether his medication can be adjusted to align with timing of carer visits - my dad's GP did this for him.

You then need to work out how and who will collect the dosset box....

Hospice nurses, GPn district nurses, social worker - all of these people can help you apply for the funding and/or assess his need to get you funding.

I sympathise, its a chaotic time.

If he is deteriorating rapidly you could ask the district nurses to come out and complete a CHC fast track referral for NHS funding which would enable him to receive more input then what you are getting now/funding for a nursing home placement.

It has to be evident that he has a rapidly deteriorating condition, towards his last days of life and his GSF (gold standard framework) status updated. Make sure he has just in case medications and a DNAR.

The district nurses should support with this.

Sorry to hear of everything you're going through OP. It's shit. I hope you get some time to look after yourself as well. Writing to your MP will bolster your chances of anything happening. That's what my mum had to do when my dad was dying and none of the systems were working. It's so piss poor it has to get to that stage though.

Sorry to hear about your DF OP.

Instead of hot meals that need to be prepared, he could ask GP for high calorie juices such as Altrajuice - my DF was on 4 of these a day as he wouldn't eat. These are nutritionally complete but 4 juices would give him 1200 calories.

Or, he could buy in decent microwaveable meals from say Cook - they do home delivery.

I think from what you have said it is unlikely dad will meet the criteria for CHC funding However if he has no property or savings he will be funded for a care home by SS. Ring social services and say you need an urgent care act assesment for dad as he is self neglecting and is high risk of falls .Sadly this can take weeks to arrange depending what area you are With mum we arranged emergency respite in a care home and social worker did the assesment at the home Thankfully they agreed mum needed care

I agree, my mum had CHC, at a care home, as there were no hospice places available. It's fully funded for 6 weeks, but sadly, my mum only ended up needing it for 5 days😥. It should have been assessed prior to your dad's discharge from hospital, and if it hasn't been, maybe try the palliative care nurses for guidance, or the district nurse. I hope you get him what he needs so that you can at least be sure he is getting proper care and supervision as he needs it.

I’m so sorry. It’s shocking how people are cared for when dying in this country. My mum died of a brain tumour last year. She moved in with me and we had a hospital bed downstairs in the lounge. She died with all her children around and her grandchildren playing in the next room. It was so tough and the most stressful time in my life, and then the saddest. But I’m so proud to have looked after her just as she did me when I was a baby. Cancer is cruel. We had carers in twice a day near the end and she spend a week in a hospice so I could sort her room but there was absolutely no way she was going to die in a hospice or care home. And she was never left alone even in hospice as my siblings slept with her. she was scared.
Is your dad able to move in with you? This time is tough but doing the bast you can will hold you through the dark moments.
side note: say all the things you can now while he is still aware 🙏🏼 so much love to you.