To think my terminally ill mum should be entitled to NHS Continuing Care

[histor]

Posting for traffic.

My mum has a terminal brain tumour. My dad has been caring for her for the last few years but a month ago she had a massive deterioration she is now:
-doubly incontinent
-unable to chew and eating/drinking very little (a quarter can of soup maybe a day). Needs feeding.

• Can't walk- her mobility has been deteriorating and she used to drag her leg but now can't walk at all, can't support herself needs lifted out of bed.

-Cant manage personal hygiene- can't wash herself or clean her teeth -Unable to communicate - sometimes appears to understand most often not. -Appears in pain holding her head a lot but cant tell us what's wrong. Screams when you touch her leg though tests show nothing medically wrong with it. -Started becoming aggressive and swearing when she is the most quiet person normally. Screamed like she was being attacked yesterday when she split water on herself.

• Struggles to take medication-cant take tablets needs to be fed liquid medicine
• Either sleeps a lot or can't sleep at all and lies awake all night.

Noone has given her a prognosis (not sure if they wanted to know at the time). A district nurse came out on saturday and said she would be eligible for continuing care. Now a pallative macmillan nurse is saying she would not be eligible for it. The social worker is under the impression that she thinks it's not close enough to end of life to qualifily for this. I would disagree due to the rapid deterioration.
We would have to fund care as we have slightly over the threshold of 22k but most of the bank accounts are in mums name as she handled the finances even though she didn't work so it should be joint money.

Potentially my dad could live another 30 years so it seems unfair for him to lose all his money. They are also saying she needs two carers because it involves lifting so potentially we would have enough money to fund a year of care. (two carers four times a day is around 30k).

I just don't see how continuing care shouldn't fund this when I have looked at the criteria. Does anyone have any advice?

She needs a formal scored assessment, it isn’t just down to the opinion of one nurse. Who is her lead practitioner? You need to request the continuing healthcare assessment through them.

The nurse is coming out today to give her assessment on whether she would be eligible for it or not but has already indicated it's very unlikely.

From my understanding the district nurse did the checklist in satursay and told us she would be eligible and now the pallative nurse is doing ths assessment today. She said on the phone that the district nurse shouldn't have told us this. The district nurse gave us leaflets on a lovely hospice where she can go for daytime/overnight or end of life but not the pallative nurse is saying she wouldn't qualify for a hospice but we could pay for a 24 hour care home if we wanted.

@histor

It takes quite a while and you have to jump through hoops to get this.

Insist on the formal assessment and challenge robustly all decisions made with which you disagree.

There's a definite culture of refusal so be prepared (I'm afraid) to be trying to get this posthumously.

Two carers four times a day should be funded by the local authority, by the way.

Do you have a local hospice? Because when my mum was similarly ill they were fantastic. Between the hospice team and the district nurses my mum (and us) received the most magnificent care.

They arranged hospital beds, commodes, liquid medicines, emotional support, lision with the gp, the consultants at the hospital and much more that I can't remember right now.

We were given a different coloured district nurses folder, the team mobile number and if we called it they were there within the hour.

We didn't need carers though. My mum lived with me and my family and my sister came home from the other side of the world and lived in a camper van on our drive, so between us we manged that aspect.

To get the hospice involved you need a gp or consultant referral. They offered counselling for my children, and they took her for a weeks respite and later, she chose to die there, but the care continued at home between those two things.

Also, the GPS were brilliant. They did blood tests at home because she couldn't travel, got prescriptions done in double quick time, did home visits, called us after hours to check on us. And I'm sure it was because the dns and hospice were involved.

Call your gp today? because it hellish and made so much worse when you're fighting for stuff. I hope you're doing OK ish too.

X post. Get the hospice involved. Initially we were told that my mum wouldn't qualify for their support, but she did. And the majority of the care she received was at home, not at the hospice.

www.ms-solicitors.co.uk/community-care-law/nhs-continuing-healthcare/factsheet-how-to-challenge-decisions-on-nhs-funded-continuing-care/

This link will help you.

I have nothing to do with these solicitors, by the way. I just found the link and thought it was useful.

Apply and be persistent if they turn you down the first time. Needing carers 4x a day isn't enough- they need to require nursing care 24/7

My own MIL had severe dementia. Despite her needing 24 hour nursing care towards the end and me knowing my way around the system it took a while to get the NHS funding. It finally came through the day after she died but we were able to get a refund of fees paid.

I assume that your father is claiming attendance allowance at the he higher rate?

I dont understand why she she doesn't have the local authority carers as pp mentioned above? My mum passed away at Easter but from December to April she had carers at home, first NHS carers - as she had been discharged from hospital. Then the the local carers which yes she paid a bit towards but it wasn't massive. She had two carers 4 times a day. The social worker should be sorting this out for you.
Sorry for what you and your family are going through it sounds incredibly sad and stressful.

And I agree with getting the hospice involved. A good deal of their support lies in providing care at home.

This is such a worrying time for you.

We would have to fund care as we have slightly over the threshold of 22k

On your other thread, where I had an enormous amount of sympathy for you, you said that your dad had 150k but didn't want to spend it on your mother. Get the assessment but make sure your dad spends the money he has available to make your mother as comfortable as possible.

Yes good idea from pp about getting the hospice involved as you will probably need them as some point anyway.

We had a similar issue fighting for continuing care for my mum because although she had terminal bowel cancer and other issues (copd and Crohn’s disease) they said they couldn’t give a prognosis so they weren’t sure how much longer she had.

In the end I got the GP involved who visited and reviewed all her notes and they wrote / contacted the continuing care team to say in their opinion her condition had deteriorated dramatically in xxx weeks and she couldn’t be likely to live beyond xxxx. I then went back to continuing care and basically kicked off and said they had to fund something.

I think in our situation it helped as Mum lived alone. There was no one there with her like your dad in your situation. Your dad / you have to make it absolutely clear that he cannot care for her. I had to do the same with my mum- they seemed to expect me to pick up the pieces but I couldn’t as I have a disabled child and I have health issues myself.

Everything is such a battle it’s exhausting.

We did get it in the end and she had carers 4 times a day for 2 weeks and then went into hospice care for a further 2 weeks until she passed away.

Does she have Attendance Allowance? It isn't means tested and if she is terminally ill, it's given at the higher rate I believe. I just wanted to mention it to you as it may help your DF with care for her.

I have no expertise and nothing to add, except a huge virtual hug. I think it is particularly unfair that relatives have to go through this anxiety and uncertainty at a time when they should be able to focus on the wellbeing of their loved ones. for you and all those others on the thread who have lost parents.

Contact Macmillan or Marie curie x

Yes definitely contact the local hospice and get them involved. They came to visit my mum several times to make sure she was comfortable and had all the equipment she needed.

No advice at all but I'm sorry your family is going through this how sad x

Just gone through this. The criteria for NHS funded end of life seems to be a life expectancy of less than 3 months. Whist we have a diagnosis in place of a terminal cancer I think the 3 months could be argued both ways.

Syncially I would suggest that we gained this funding through a hospital stay - where they needed the bed but patient clearly couldn't go home. So hospital nurses applied...

In terms of finances can you get your dad added to the accounts? I believe the limit is £23,000 each person not including the home someone else has a legal right to live in (so hopefully he is at least on the house deeds).

Just to add the £23,000 applies to home care support - the limit for residential care is significantly less I think I recall £6,000?

Are you the poster whose dad has 150k in savings? Yet your mum has no carers? I don't think the NHS is the problem here.

Money aside, does you dad want to see your mum comfortable?

From what I remember from your other thread your dad is refusing to spend their savings on care and adaptations? I believe he has access to 150k including inheritance money he accepted from yourself and your sister because you both believed they were broke? Your dad is being very short sighted, what is he holding onto the money for? If it’s for the future, well that time is now.

In terms of assessment I would say that her inability to communicate her needs and the difficulty in assessing her pain levels should mean she is at a higher level of needs there. Also she is at risk of developing pressure sores due to her incontinence. The aggressive behaviour also needs documenting. I would strongly advise that you are present during the assessment. She needs to score above a certain level to qualify.

You don’t need a terminal prognosis for CHC. You simply need primary health care needs. Await the outcome of the checklist and then go from there.

I just want to say, I'm so sorry you're all going through this. It sounds absolutely horrendous. I hope you get what you need for her. You and your Dad sound wonderful. I'm sorry your Mum seems to be suffering and I am sure she knows you're there looking after her.

Your Dad's being sensible not wanting to pay for care out of the money that's meant to be supporting him for the next 30 years. It's a battle to get funding - persevere.