care options for H.E and decompensated cirrhosis

[Concerneddaughter33]

Hey, hoping for some advice on care options for someone suffering with cirrhosis and H.E

My dad was diagnosed this January, but clearly quite late on - he has since had 4 hospital admissions due to severe (stage 3) H.E and one time he went into coma (stage 4).

This latest admission lasted 2 weeks and he was discharged) only to end up back in hospital 3 days later. We were concerned about confusion levels and managing his symptoms at home prior to his discharge, as he was not himself but the doctors believed he was fine. Clearly he wasn’t.

To try and prepare us for his next discharge I’m trying to gain information about care options (as the hospital really didn’t help much on this front). He is usually an independent person and lives alone - family care is available but probably not to the extent he needs and he doesn’t really want to have to move in to anyone else’s. What have other people done? Is our only option private or are there charities to call on? And what sort of care can be provided?

He needs 2 x enemas every day and someone to check he is taking his medicine as he’s demonstrated a number of times he’s not in a fit enough state to remember these himself and the outcome of such a tiny change can clearly be fatal. It’s very scary and uncertain for all of us.

[CHanse]

hi, have you looked into getting funding from continuing health care? This would perhaps pay for nursing care or carers that could come in a few times a day to give your dad his medication? He should also be able to apply for PIP to help with any other care needs.

[AyrshireK]

What age is Dad? Is he potentially a candidate for transplant? My hubby has HE, he's 62 and although his issues don't seem as bad as your Dads it's still round the clock care that he needs (and I provide). We hope in our case that it's a temporary situation because hubby is awaiting transplant.

If Dad isn't likely to be eligible for transplant then he might be looking at needing care at home, respite care or residential care and the term palliative care may pop up. He absolutely must not be discharged home without a care package in place.

The British Liver Trust has a page and downloadable booklet about planning for the future which may be helpful. Your Dads GP, local adult social services and even your local hospice should all be able to give you advive and support.

britishlivertrust.org.uk/in...

Wishing you aĺl the very best,

Katie

[MilliganHorse]

I am sorry to hear you are experiencing this with your dad. As per the other replies you can go through your GP or directly to adult social care in your area and apply (we had to for my mum - different issues but exactly the same in terms of needing care 4 x per day) and there is also a non means tested attendance allowance which might help with costs (forms on line via the official gov.uk website and attendance allowance it gives all the criteria etc and the forms take a while to complete but we got mum's payment quite quickly once she was accepted). Otherwise there are a number of really professional and excellent private care companies if he has the funds again worth investigating.

Good luck and hope you get the assistance you/he needs asap.

[2022minks]

Hi, are you your dad's next of kin? Being his daughter should allow you to contact his consultant at the hospital. Your dad is diagnosed at decompensated stage which also means he is eligible to meet with the pallative care coordinator at the hospital even if he is at the beginning but because of his HE episodes he really needs monitoring via his gp and District community nurse team. Hospice care kicks in right at the end of someone's life but they do offer many services that help those with a shortened life span, counselling and family support. My mum survived 5 years from diagnosis at decompensated cirrhosis, everyone is different but having family, friends or care support around him will be key and in talking to your dad about this when he is in a good place to discuss his care and affairs is a good talk to have. Also ask if he is eligible for transplant, he maybe or he may of decided not to but talk with your dad. He will of been told but trying to remember everything when you are diagnosed at late stage is enough to take in itself. The British Liver Trust helpline would be a good place to start, they can provide all of the background information on Liver Disease and will also help you to understand what could happen. Sending you 💓

[Readlots]

My Mum was discharged with care from the hospital team initially. We requested palliative care through our hospice. Often it isn’t suggested so be prepared to ask about it. The hospice made contact once she was at home and they liaised with other services. The community nurse team started visiting weekly and this increased over time. They were fantastic at coordinating the occupational health team who provided the equipment we needed and later the bladder and bowel team and dieticians. Someone, either the hospice or community nurse applied for NHS continuing care which we got. They then organised carers to take over from the hospital team of carers. The community nurse later involved Marie Curie for night time nursing so that I could sleep.

I started calling in to see Mum a few times a week, moving to daily and then moved in with her when it felt right. Like your Dad she was very independent. I told her I’d be there as much or little as she wanted. I think she got scared once her mobility got worse and she wanted someone there with her. The hospice can help you have those conversations about what sort of care they want.

If he is eligible for transplant, palliative care can run alongside.

It’s really tough going so take care of yourself and let as many people as possible help you.