Question regarding Care Cost

[Patrick Read]

This is my first visit so I hope this is in the correct Group.

My Mum has spent the last 6 weeks in hospital with a Neurological condition thats slowly getting worse.

She requires a feeding tube through her nose and needs this for 14 hours per day as well as oxygen and occasional Nebulisers..

Yesterday we were told that it was unsafe to her to go home as full care was not really an option with the amount and complexity she would require. They said she would need to go into a specialist Nursing home for care, or the other option being to go home and face the inevitable.

My questions are -

Could we as a family arrange to pay for the full care at home?

If she decides to go to a home, what are the options for paying, or will the National Health pay most costs?

Mum owns her own home and Im having difficulty finding out her options.

Any help greatfully recieved.

Patrick

[bowlingbun]

From what I can gather, care costs provided by Social/Adult Services are means tested. Care costs provided by the NHS are not. Ask the hospital to arrange for a "Continuing Care Assessment". As I understand it, if mum has very serious health issues, and the CCA assessment will establish this, then she is entitled to free NHS care, either in a nursing home or carers coming into the house. Has anyone looked at mum's home? Before my mum was discharged an Occupational Therapist visited and worked out what mum needed, and arranged for it to be provided before discharge. Only when all this has happened will you have a clear view about whether there are practical issues about whether mum can ever go home again. If the house is not suitable now, could it be made suitable in the future? A lot depends on mum's life expectancy. Then you need to decided if mum needs a 24 hour nurse. If so, is there somewhere for the nurse to have as her own room? Most of all, what does mum want? If she wants to spend her last few weeks or months at home, and her house will be sold after she has passed away, then you should be able to arrange this. However, will a time come when she will need nurses two at a time to care for her? These are all matters to consider in advance of assessments from Social Services etc. You should also have a Carers Assessment from Social Services. My own mum is elderly, physically frail. She isn't yet entitled to Continuing Care, manages with 3 paid carer visits per day, if she is ill then a nurse can stay in mum's spare bedroom. She is adamant that she'd rather stay at home if possible. Mum doesn't have massive savings but has a valuable house, so if required she could borrow from the family knowing that when she no longer needed the bungalow, the family would be repaid.

[Eun]

Bowlingbun do you know if Continuing Care only applies in England or is it UK wide? I was wondering if this might be a road to go down to pay for respite for Robert because the reason that Leuchie House is charging so much is because he is ventilator dependent 20 hours a day, needs 2 people for hoisting, needs 24/7 care etc. If CC applies in Scotland it might be another avenue for us to explore.

Eun

[Lazydaisy]

I would imagine that there is an equivalent in Scotland.My son's Social Worker fought for this support for my son(His diabetes needs and Downs Syndrome are not a good combination, people with Downs Syndrome can be very sneaky with their food,and it can be exhausting watching him all the time 24/7).It was not approved then, but I might ask again, it was before my younger son's death,so perhaps will be able to be reconsidered.It is called a Complex Care Package in Wales.


By the way Patrick, welcome to the forum.

[bowlingbun]

Sorry Eun, I wish I knew the answer. If there isn't an equivalent in Scotland, then perhaps you could ask the Minister concerned why not? And if there is one, why the hell haven't you been told about it before. If your Rob didn't qualify, who would? I've just had a quick look on Google, there is a website called "Care to be Different" with lots more information, and details of the landmark legal case often referred to as the Coglan case. Now I'm feeling really guilty that I hadn't thought of CC in relation to you and Rob before. I do hope this might just be the light at the end of the tunnel for you (and no, I don't mean some ba****d bringing you more work!!!)

[charles47]

Hi Eun

The rules are broadly similar but Scotland has its own regulations: I remember posting a link some time back when you asked the question before but brain a bit fuddled today.

[Eun]

Sorry Charles now you come to mention I vaguely remember - must look back and see if can find it. SW coming out next week to discuss things re respite etc so will mention it to him then and get him to look further into it. From what young Rob has researched you get continuing care if you use a ventilator in conjunction with a tracheotomy but not if you use non-invasive ventilation as Robert does. Its the same thing but different ways of using the machine.

In saying that do we really want even more people (so-called 'care' workers) sticking their oar in and invading our privacy and family life as we have enough of them as it is? If we can cope without a trachy he's as well to try and avoid it as long as possible.

Eun

[charles47]

http://www.sehd.scot.nhs.uk/mels/cel2008_06.pdf - this is what I found last time. Chances are it's been updated because the England/Wales one was updated in 2012 and in April this year. Starting point at least.

[ellcee]

I am in England and my son currently qualifies for Continuing Health Care. Here, there are lots of different sections on which you are assessed and you can qualify by having a very high need in one or two sections or a lesser but still high need in several sections.
It is a mixed blessing. In theory, they pay for "everything", but I don't know where it's defined what "everything" is!