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

So sorry you and your father are going through all this.
Have you considered contacting your MP? Though a different area, a relative contacted theirs regarding a housing situation and their MP was surprisingly helpful. Wishing you both the best, what a sad situation when someone in your father's situation is basically left alone to manage (if you weren't there).

Have you spoken to social services?

First of all, I’m sorry for your dad’s diagnosis- I know this must be a difficult time. Hospice is usually available when pain etc unmanageable at home or your dad is actively dying towards the very end of his illness. I’m assuming by that point your dad will have carers in the morning and evening. District nurses would likely be visiting at least once a day by then for possibly syringe driver medication or stat doses of pain relief. Is there any friends of your dad or other family who could sit with him when you are in work to take the burden off?

Is their Hospice at Home locally?

Well if you are looking at giving up your job you could probably employ a private carer/comapanion (or a few of them) but even if you lived with him you couldn't be there 24/7. It doesn't seem like he has deteriorated enough to secure funding for a nursing home bed. If he cannot prepare meds and food you need to get social workers involved and look at increasing his at home care visits. You will need to pay something towards these though pending a financial assessment.

OP sending love at this terrible time.

Can you have a meeting with your school to work out a strategy? Could you take an unpaid leave of absence? As a TA I imagine you are not particularly highly paid but good TAs are highly sought after… would it be an option to quit, claim a carers allowance for a while and then you can get another job?

Can u ring st David’s nurses as my dad had same as your dad and sadly passed 2 weeks ago but they were brilliant . I wish u well xx

Hospice care is only available in the last few days/weeks of life, and same for Marie Curie. And even then the chances are slim of getting it. My DH had no chance of hospice care (though they provided a day a week of day care) and we only got a Marie Curie nursefor the last two nights because someone else died earlier than expected.

You really need to phone the Macmillan or Age UK helpline and get them to take you through exactly how you get nursing home care for him. And take copious notes.

Does your dad not have the number for his oncology specialist nurse? Every cancer patient should have one and they're the first port of call for anyone caring for them.

It seems as though you're just sitting here overthinking and panicking instead of going straight to adult social care or his oncology unit support and getting factual help. The discharge team are not the people to help you. They have different objectives.

You could take sick leave for this kind of thing ?

I would ring around nursing homes both close to him and closer to you. Talk to them about your options. They will tell you what funding they think he needs and what is available given his diagnosis and condition state.

The problem with hospital discharge is that they have relied on you being there and washed their hands of him. You have to essentially do the same in order to get any support from the system. Go back to the hospital social worker or whoever is telling you the funding will not continue from the hospital (they will do a 6 week or so discharge to community - so that is why that funding is stopping). You need to tell them that you cannot continue with what you ate doing as you need to go back to work and that therefore they are risking a failed discharge as he will not cope with 2 x 10 min visits. Tell them you have looked at nursing homes and want him placed in one. They will do the assessments for funding but if he has no savings / doesn't own his house they will have to fund. CHC is a specific fund related to illness which is different to the standard 'old people's home funding' the latter being means tested - CHC is not.

You need to get your fighting hat on OP and seek support if you need it. It is not an easy ride...

Sorry OP my comment was to someone who seemed to be implying that he didn’t need more care if he had been assessed as only needing carers to pop in. I’m very sorry you are in this situation and have been in similar recently. In a different country so I can’t really advise on specifics. But I do know that you have to keep trying every avenue and keep badgering people to get help. I would ask for more time off work as others have suggested upthread. It’s all absolutely exhausting so you need the time to dedicate to getting the help. Don’t actually quit your job though- hopefully they will be understanding or your GP will sign you off.

Sorry to hear you’re in this situation, it sounds really hard. As people have said, you need to apply for continuing care although the criteria is strict. In my experience, once you get continuing care you can choose whatever care you like and it will be funded (eg carers coming in x number of times a day) and if you want to increase or change the care then you can. In my case it funded a relative having carers in three times a day but there was scope for funding overnights etc. So if your dad would like to stay at home, if this funding is secured then it probably could be achieved. My relative was privately funding the carers until the CHC was approved. I’m sure your dad’s Macmillan nurse (or equivalent) could help with the application and advice, do you have their details?

Again, sorry you’re in this situation. I know first hand how overwhelming it is and hope you have some support. Many hospices offer (anticipatory) grief counselling if that’s something you think you would benefit from.

https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/

What you also need is a power of attorney for health and welfare and a discussion of what happens when he is at the end of life stage. Does he want to be resuscitated? Does he want to be in a hospice, at home, in hospital etc?

https://www.resus.org.uk/respect/respect-patients-and-carers

My DM had a stroke in the end and I was able to uphold her wishes to remain at home for paliative care only, as I had POA and had discussed these matters with her.

Also apply for a blue badge and attendance allowance for him if you haven't already. It's usually pretty straightforward with terminal cancer.

Do speak to the charities about getting support for yourself if you need it. They may be able to help with the work situation too. 💐

Ok. So your father is terminal and he has a primary health need - cancer/EOL.

He will be entitled to the CHC fast track pathway. This needs to be done ASAP.

He can continue to be looked after at home - but you have to fight for it.

All nursing homes accept money - they don’t care wgere it comes from: health, social, 50/50 mix.

The first thing that needs to happen is yhd CHC being out in place

Then go from there.

I think you need to see your own GP and get signed off work first of all then look at different options for Dad. TBH if he has oesophageal ca and is already frail, he probably has not got much longer to live. Can you speak to the district nurses and ask if they can expedite care and go over the options? But firstly get yourself signed off and speak to your manager/head to explain.

What you require and what you get are two very different things from experience. Also an elderly person with cancer may deteriorate very rapidly.

Fortunately you've heard wrong.

My dad was dying of heart failure and had palliative care in a lovely private care home and no payment was required. It's medical care not social care.

My mum had fantastic palliative care for terminal cancer at home provided by NHs/local authority.

People might need a bit of a kick to get it sorted - the hospice, Macmillan or Marie Curie should be able to help you with the red tape.

Have you applied for carers allowance? (I really don’t know the requirements but just suggesting it in case you can get it)

Does he have wifi? Could you set up something so that you can easily talk to him throughout the day. Amazon echo can be set up so that you can ‘drop in’ any time and speak with him. You can set it up so that he doesn’t have to touch or do anything. There are lots of similar systems that might be better as purpose made for situations such as yours.
You could even just set up security cameras that you can talk through as that would be very inexpensive and easy. You would be able to see what he is up to and you could talk to one another. He would be able to see you though.
You could rent a temporary mobile wifi hotspot if he hasn’t got internet already.

Obviously you will still need to go down but I wonder if something like this might help a little.

im so sorry you and your Dad are having to deal with this. He is lucky to have you.

I don't think you should give up your job. Certainly put your Dad on the waiting list for the hospice care. And contact Macmillan amd Marie Curie. Unfortunately I've heard that when the Council is paying for care then only minimum possible entitlement is provided.

Do you have to give up work?

dh took extended leave- most unpaid tbf but he claimed carers allowance which isn’t a lot but paid some of the bills while he was with his mum at the end of her life.

but at least his job was there when it was over.

can you speak to your employer? If you’re a TA presumably you’ll only need 6 weeks or so
leave then you’re off till sept…

No care home advertises that they do CHC funding, because that's not how it works! You're not paying so why would they advertise it to get your custom? You need to contact adult social care and your dad's cancer nurse, then as and when the assessment is completed and finding comes through, a nursing home will be found for him.