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

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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?

You probably are, but just in case - is your mum getting the full rate of PIP? If you have a terminal diagnosis you are entitled to it automatically. It's not means tested. It is usually backdated to when the diagnosis is made.

This is ops only thread. Unless others recognise her for some reason. You can apply and appeal. Do whatever is suggested. However bottom line your mums last x amount of months on this Earth is worth more than the money.

If it is anything like my dad's case we fought to get it and he was awarded it on the Monday and died on the Wednesday. He got the total sum of one night of a waking carer out of it !

Also, find out about your local hospice. My brother, when terminally ill, went in several times for respite care for a week at a time. He was on a very complicated drug regime but also in a lot of pain. They always managed to get him more comfortable/sort everything out. They were wonderful. Sounds a funny thing to say, but he was always very happy and relaxed there because he was in such good, knowledgeable and caring hands. He also chose to die there and died a pain free (but heavily drugged) death.

Ignore the MacMillan nurse's advice. Push for a proper assessment and get them to show you the initial primary score which then leads to a full assessment. I can't think she wouldn't qualify at least for that.

You have to inform yourself as fully as possible,even though it's already a distressing time. We ended up with specialist legal advice,which was very helpful and I also downloaded the full assessment form and filled it in myself! I took it along to a meeting with the final assessor before she went to panel and we compared notes,which were quite similar,luckily. The panel awarded my mum CHC the following day but it had been a hard slog to get there despite her obvious needs.

We weren't told that CHC existed by the hospital she'd been in for 5 months, and they seemed a bit put out when we brought it up at the multi disciplinary meeting to decide what next. In fact the ward sister,as she then proceeded to do the initial assessment, said to me "somebody's been doing their homework,haven't they?"
You bet.

Age UK have a lot of useful info plus the dedicated Continuing Healthcare site
caretobedifferent.co.uk/

You have the money, you should pay for the care

With my FIL he was given free 24 hour care as he had cancer despite he and my MIL having funds . With my M and a subdural haematoma/dementia she had to fund herself . It is a nightmare process and often results of assessments come too late . Sorry you are going through this . It is just awful . Just keep on at them !

Good advice about hospices, but not everywhere has residential hospices any more. DF is terminally ill and has support from our local hospice, but they provide daycare only and most people qualify for one session a week/fortnight. They're absolutely amazing but, funding being what it is, can only do so much.

If he has 150k just tell your dad to pay for the care she needs.

The threshold is quite high and CHC is only granted when the risks to the patients are graded as high or severe is a number of areas - for example difficulties with breathing requiring oxygen, continence issues requiring catheterisation or bowel washout. Although your DM requires a lot of interventions, most of it falls under the category of Social Care and is therefore funded as such (ie by lthe LA or your parents own funds). Being incontinent and requiring feeding by someone else as well as needing help to get dressed and in and out of bed or being in a wheelchair will not qualify someone for CHC funding - it is the need for nursing care (even if that care is not provided by a nurse) which is the qualifying factor.

And even if you are successful in getting CHC it doesn't mean you will keep it. I know of someone whose DM was granted CHC funding following a stroke which has left her bedbound in a nursing home and unable to speak or communicate meaningfully. It was granted after the illness and then taken away upon review 12 months later - even though her condition has not improved. They have been fighting to get it reinstated ever since.

Is your DM claiming Attendance Allowance to help towards her care costs. My DM got the full rate which covered the cost of the carers she needed (she lived in Wales where the charge for care costs in the home are capped)

Your mum's needs sound very similar to my mum who is in the late stages of dementia. She was also turned down for continuing care. She's in a nursing home and a small part of the cost is some kind of nursing care contribution. But the majority of her care is paid for from the money from the sale of her house.

I think you should contact age UK for advice on this.

I looked back on the thread where the OP's mum was also terminally ill, and they had £150,000 in savings, which the OP previously didn't know about. It is a different poster, different username.

I don't know why people are assuming it's the same OP? Sadly more than one poster can have a terminally ill mother.

The checklist is only to see whether you're eligible to be assessed for CHC, not whether you're eligible for CHC itself.

CHC doesn't go by illness, it goes by whether the needs are nursing or social. Most of what you describe is social.

You're running up against the inherent unfairness of the system. Many people are looking after elderly partners with dementia who have the same needs, and equally are unable to get CHC.

I actually think that continuing healthcare is a misnomer.

My parent is too ill to look after themselves but not ill enough to be hospitalised full time.

So in effect they are still needing treatment, so why doesn't the NHS pick up some of the cost?

My child with complex needs gets a few hours continuing care funding a week to enable me to sleep as he needs care throughout the night. We get 2 nights a week.
Your mum would be at risk of choking if she cannot swallow and also the same with her medication. Basically they are looking for life threatening needs such as needing oxygen, suctioning, etc or risk of injury or death due to seizures etc.
I would stress the unsafe swallow side of your mum's illness when they assess her and also the risks of injury because she is unable to understand how to keep herself safe . You have to score in several categories in order to qualify and you get points within those categories for severity.
It is a complicated palavar to be honest !