Continuing Health Care - Preparing to fight PCT's decision

claudiac_2

Monkeyspanner - Thank you very much for responding so quickly. Off to read those links, will come back, no doubt with many questions, but I would like to say this thread has been the best find for information, and that is due in no small part to your input!!

cepheus

It is likely my Mother will undergo this assessment over the next few days as she is considered for a nursing home, not sure if anyone has any advice.

She is in hospital and has been diagnosed with terminal pancreatic cancer, but has just been fitted with a stent to unblock a bile duct which was also cancerous and was causing jaundice, severe eating and constipation problems. Her weight has decreased from 10 to 7.5 stone in 6 months.

Her eating has improved somewhat in the last few days since the stent was fitted, but is still unstable in my opinion, with perhaps weeks to months trather than years before deterioration sets in again. She also has diabetes, osteoporosis & angina, therefore she takes about 10 medicines, including a morphine derivative.

Occasionally she drinks morphine as extra pain relief which requires a professional nurse but this may have stopped. She was semi-mobile with a triframe before entering hospital but can't even move far enough to pull the TV towards her now. Psychologically she is alert and can communicate well, but is very tired.

If she doesn't get this continuing NHS funding my understanding that she will have to pay £1 per week per £250 of saving above £14250 up to £23250 (she has about £19k but no property), so about ££20 a week. This isn't too bad but I think there may be extras, such as the nursing element.

margaretclare

Hello, cepheus, and I am sorry for the very distressing diagnosis/prognosis of your mother. She is suffering from so many different things, all of which are distressing, painful and inconvenient.

'Terminal pancreatic cancer'. Have a look at this site: http://www.pcrf.org.uk/

This was what the actor Patrick Swayze died of. Survival rates are still 3% surviving to 5 years, whereas with other cancers the survival rates have improved.

She is going to need skilled nursing from specialists. Maybe a good nursing home, with qualified staff on 24/7, would do it. A so-called 'care home' would not.

Our local hospice has an 'outpatients' department, day-care for people who're not yet ready to go in full-time. I would have thought a hospice would have been the best option.

Does she know the diagnosis/prognosis?

Ooops, you said she was 88.

cepheus

Sorry, I meant how likely is she to get NHS-continuing healthcare.

I have read through the factsheets,

http://www.ageuk.org.uk/health-wellbeing/doctors-hospitals/nhs-continuing-healthcare-and-nhs-funded-nursing-care/

but it still unclear how severe they will judge her to be. I doubt if her condition could be considered to be stable even on a monthly scale.

realshannon

update from me, after waiting ages for the insurance company, chased them and they have said No to using the legal expenses cover to fund Hugh James assistance with the retrospective CHC. I think, having gone thro some of the old papers, I may some more steam left in me, and will try again with the NHS as they never really answered any of the points raised - perhaps if they get fed up with me, they will just accept they were negligent in the first place. will post again, probably in months+ time, when I know more - isnt it so rubbish we all have to do this when it is meant to be an entitlement

4372

Good Evening.
I am seeking advice about CHC Funding, but it is slighly different to the issues raised in this forum. I write as the Deputy for a family member, appointed by the Court of Protection.

The family member (my father) is in a Nursing Home. He has been granted CHC fundng for the last 3 years, after an initial spell on Section 117 Funding. While he was on Section 117 funding he paid a top up fee from his own funds.

It is my (limited) understanding that the NHS CHC funding is in respect of all his care and accommodation needs. In fact the CHC funding amounts to about 70% of the Nursing Home fees, but he still pays nearly £2000 a month from his own funds.

I am currently considering challenging the level of CHC funding and seeking to make the NHS pay in full.

In brief I am seeking initial advice about whether my line of thought about the CHC funding level is correct, and how I should go about challenging the current funding level. It is a difficult situation, and I accept that I may need to seek professional advice.

As an aside, I approached the OPG for any advice, because it seems to me that as Deputy I could be held to account for not fully safeguarding my fathers finances if I continued to pay these top up fees. The OPG was able to offer me no assistance.

Many thanks for your consideration of ths post
4372

monkeyspanner

4372 wrote: »

Good Evening.
I am seeking advice about CHC Funding, but it is slighly different to the issues raised in this forum. I write as the Deputy for a family member, appointed by the Court of Protection.

The family member (my father) is in a Nursing Home. He has been granted CHC fundng for the last 3 years, after an initial spell on Section 117 Funding. While he was on Section 117 funding he paid a top up fee from his own funds.

It is my (limited) understanding that the NHS CHC funding is in respect of all his care and accommodation needs. In fact the CHC funding amounts to about 70% of the Nursing Home fees, but he still pays nearly £2000 a month from his own funds.

I am currently considering challenging the level of CHC funding and seeking to make the NHS pay in full.

In brief I am seeking initial advice about whether my line of thought about the CHC funding level is correct, and how I should go about challenging the current funding level. It is a difficult situation, and I accept that I may need to seek professional advice.

As an aside, I approached the OPG for any advice, because it seems to me that as Deputy I could be held to account for not fully safeguarding my fathers finances if I continued to pay these top up fees. The OPG was able to offer me no assistance.

Many thanks for your consideration of ths post
4372

I think in your position as guardian you are wise to double check this.

It is my understanding that all fees should be met if CHC funding is granted. I also thought this was the case in respect of section 117 but I have no direct experience of this legislation.

Could I suggest you cntact Counsel and Care https://www.counselandcare.org.uk and ask their advice. I would be very interested to hear why if your father is in receipt of CHC funding he is paying towards his care and on what basis this has been assessed. Sorry I couldn't be of more assistance.

claudiac_2

Archie - I am glad to hear someone is trying to take a stand on this issue, most people have no idea what they are up against when they try to get care for their elderly relatives, so I wish you the best of luck.
I see you are a new user here, so can you let us know if you are on another forum where people can get information, as it is difficult to find.
Thanks

cepheus

I don't know about the cognition part, but my Mothers case proves the system is a complete farce. The first assessment was thrown away so I couldn't see it, the next one was first denied then accepted both on the next day. They said her drug treatment was simple, but failed to give it to her effectively. They then gave her hours to live but she died 4 days later!

Therefore, if anyone gets CHC for physical reasons alone. the NHS are unlikely to be paying them for long.

Good luck anyway.

claudiac_2

Monkeyspanner - Can you give me some quick advice here please. Situation is FIL is in a locked ward for assessment, and today when I was at work and unreachable, they phoned MIL at home to say he is to go into care home. They said they had sent her a letter inviting her to the meeting, she never got one, they said the consultant and charge nurse on ward attended, but we were not notified, nor invited. What do you think my first step should be to challenge them?