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

I’ve done this twice with parent or close friend terminally ill with cancer. It’s a horrible situation to be in, for everyone concerned.

What I’ve learnt from that though is not to make spur of the moment decisions and assumptions. Both people lasted a lot longer than anyone thought possible - the first a matter of weeks, the second measured in months. Keeping up a high level of visiting and not working is sustainable for days, maybe for weeks, probably not for months. I’ve seen someone I work with whose parent is nearly a year on after being given a month to live.

As for the job. Can you afford to live if you aren’t working? Is it a job you could afford to leave and then get another similar one? Could you manage without working for months if necessary?

What I’ve found is that, once
they’ve gone, you have to keep on living. That becomes very very difficult if you can’t easily get back into work, have fallen into debt, fallen behind with mortgage/rent etc. What would your parent want for you?

In my experience hospice care is excellent, but it didn’t come until the very last days or weeks as there is such limited availability. What does come in the meantime is a care home place or carers at home, including night time care. But you do have to be really clear what you can, and can’t do.

The care team that are currently in place will assess if further more permanent care is needed at the moment in which case of it is they will carry on until that is in place or pull out if he doesn't need care services at the moment.

A CHC fast track is funded care for people who are showing signs of rapid deterioration ie that they are in the final stages of life.
This is a 24 hour turnover, reserved for people who are changing quickly and in the last 3 months of life so can be put in place very quickly when it is needed.

You don't need to look for a nursing home that accepts chc funding, if and when this needed they all do.

At the moment if he requires very little care, just drop ins for food and reassurance this would be means tested- if your dad can afford it he would be charged, if not maybe pay towards it, if not maybe funded. As soon as this changes the district nurses can apply for fast track funded care.

Hospice input could be valuable if symptoms are not controlled and there are palliative care needs that are not able to be met by the GP and district nurses. Just because there's a shortage of beds does not mean it's a definite no to an end of life admission, it just isn't definite.

I know its a worry but it sounds good that the just in case box is at home, if he is struggling with symptoms there is that as back up.

At this point in time it sounds like giving up work/ moving people around is not needed, just be as prepared as you can and respond as things happen.

I hope all goes as well.as possible at this difficult time OP.

Yep. They’re called Ensure and they can be prescribed by GP. Each one is a meal replacement and has all the vitamins and minerals/calories needed if the patient isn’t eating.

What do you mean Ensure?
Is that the brand name of the high energy drink things? I have no clue what the make was. I just know they existed.

Speak to Macmillan for advice. I’m so sorry

Depends on the assessment. My mum has basic old style pension and attendance allowance. She was required to pay a proportion of that to social services for a basic level of care. I enquired as to how much it would cost if I took over the fees and was told that depending on my financial situation I could be asked to pay the remainder of the actual fees incurred by the council after mum’s contribution. For four visits per day this could have been as high as £60 an hour, so £180 per day after mums contribution.

He won't get CHC funding for carers at home until much later on. If he goes to a NH , they will do the CHC which will part fund his care. You don't need to do anything about the CHC funding yet.

Yes of course that too. But if there is no joy on that front then it's surely got to be cheaper than giving up work.

Hospice nurses can't arrange care home placements. You need to speak to adult services at his council to get the ball rolling.

Sorry you and your dad are going through this.

Your dad should have a specialist cancer nurse (or possibly pallitive care nurse) assigned to him. I would get in touch with them and chat through your concerns on behalf of your dad. They can also (at least in my area) help with referrals to other support services. They would be able to talk you through what to expect and perhaps outline a suggested care plan.

He should also have access to a dietician as part of his medical team (again arranged by the specialist nurse) - they can support with meal plans/suggestions and prescriptions for supplement/nutrition drinks like Ensure/Fortisip. If he isn't able to eat/doesn't feel like eating these drinks provide all the necessary nutrients and calories.

It's great that he has already started counselling. Have you thought of getting any similar support for you? If it's not provided to next of kin via the hospital, then have a look to see if there is Maggies in your area. They are a brilliant charity and offer counselling support for family members.

Six weeks is such a short space of time, both you and your dad are probably still in shock - it's such a lot to process. Do make full use of the support services and his specialist cancer nurse - mine has been amazing (sadly, a post code lottery I'm sure)

I'm sure that you can organise with your dad to have his full permission to discuss things with his medical team - I did this when my mum had cancer in her early 80s. She was getting forgetful and was very overwhelmed and was very happy for me to speak on her behalf and discuss things with the team.

Don't quit your job (unless you really really want to). But it may be a good idea to get signed off for the rest of the school year so that you can deal with everything and look after yourself too.

So sorry you're going through this. My Dad had oesophageal cancer and we managed to persuade him to move near to us for his final months. It wasn't easy to organise (he was renting for a bit) but it made a huge difference.

This. I share the experience and the despair at the hope some posters are giving OP in ignorance here.

You need the CHC sorted first
From either his OT, social worker or palliative district nurses
It's a checklist then a form
As others said it'll be fast tracked

I would hold off on phased return for now or do one day a week

Then you find some local homes or hospices - ask district nurses, local Facebook page, his friends for recommendations - phone and ask if they take CHC - then go view them

You say he's not ill enough but he would be without you acting as a buffer
So when yiu discuss his needs or fill out his forms talk about what he is like with you not there - so unable to feed self, not cognitively able to recognise own needs for feeding, medication taking or toileting etc. Needs to be what he's like at his complete worst
But he will be eligible for CHC regardless tbh

I'm so sorry this is happening <3
It would be nice if he could live with you or if you moved in with him temporarily I suppose. Hospices are nice places though.
It is hard. You do have to fight and push and push. But remember to spend the time with your dad and not stress too much. He's comfortable at home right now. It will get sorted eventually, the NHS is not joined up and things tend to happen in crisis and in dribs and drabs..And you don't want your last time with him spent stressed out and constantly taking it for granted. So try and take him out for some nice days out with your children on your time off work/phased return. Blue badge means free/reduced national trust I think

Have you ever tried to secure CHC funding ? They will fight you at every turn, including disputing what constitutes a terminal diagnosis.

When my Dad was diagnosed with liver cancer, he was given 4 care visits a day but the reality is that it was a different carer each time who didn't know where his medication was/what to do and it just stressed Dad (and me) out. The district nursing team were a joke, Dad couldn't get up to push his entry buzzer, there was a code for the building but no one ever read the notes before recording yet another failed visit His mobility went in under 2 months, so he went into a hospice for nearly a month and then was discharged into a nursing home as he couldn't be left at all by this stage and I couldn't give up work (run own business). He died less than 5 months after diagnosis. It was the most horrendous experience, OP, and I wish I could give you hope but you have to be bolshy, pushy and very vocal to get anywhere. My only ray of light was the palliative specialist nurse who pushed just as hard as I had to. I'm so sorry you're going through this.

Why ? He’s entitled to a proper care provision assessment and the provision entitlement can be challenged before OP goes down the road of offering to pay for the not inconsiderable extra cost.

This. The more relatives make themselves available for care, the more the authorities will let them get on with it.

GP can't do anything except refer to social care, that's their role in this . Nothing else

Of course. But if he isn't entitled to enough visits she could perhaps pay for additional ones.

I am so sorry to read of your dreadful situation. As another comment….your dad should get a place in a care home funded by the LA if he has no capital. Can you approach your employers and apply for extended leave? And please try and get social care involved, they aren’t there to judge it’s their job to help and support both you and your dad.

Nope. None of this in my experience. GP had no clue apart from a referral to social services. Hospital social worker was worse than useless. Advised us my mum was entitled to six weeks free home care on discharge from hospital - the reality was a £1000 bill with a threat of bailiffs if she didn’t pay up. The care system is broken. I am disabled and in a wheelchair and so is my partner. My mum has dementia - advanced. We were left to get on with it - SS care, was woefully inadequate. Two out of the four care visits she paid for just didn’t happen and any excuse not to shower her. Two male carers turning up most days to do personal care, which caused untold distress. We are now breaking ourselves financially to provide private care for mum because what SS provide falls far below what’s needed.

Please do not give up your job. Your dad would not want that.

Fast track CHC fundibg is for 12 weeks or less to passing away not a terminal diagnosis. OCancer has a prognosis of 1 year. This is not set in stone of course but but social care will provide care when he needs it I'm not quite sure why you think they won't