CHC level of support given

[Spiralsparkle]

Hi all

For those of you who have been awarded CHC and use this within the home setting. Can I ask how much care you are allocated? E.g. personal care calls, socialisation, respite . I think someone on here has 24 hour live in via CHC.

I'm currently having a battle with hospice who have now agreed to do a checklist but they say I won't get anymore help than do currently, 4 x personal care calls a day. Everyone seems to want to push to a nursing home even though it is not Mums wishes. Shortage of budgets and care in the community.

I'd like to know what other areas are able to provide families.

Apparently the CCG use the same care agencies as social services so the level of care would be the same, no specialist complex care agencies...So they tell me.

[kenh1]

We have been CHC funded since 2013. We also are on 4 visits per day. We have an annual revue of care which has been carried out by the same nurse who understands our needs. We are having this years review in a couple of weeks time. On a previous review she was pushing for night sits which I resisted. My understanding is that they fund the care agencies with the same amount as they give nursing homes. We get Attendance allowance which I use to fund extra care, respite breaks etc.

[Spiralsparkle in reply to kenh1]

Do you use the same agency for your despite and extra care?

Yes I've been told I won't get any night sits, even though they agree I need them!

[kenh1 in reply to Spiralsparkle]

No, I use another care agency, they provided a young lady who took my place and gave 24/7 care. She has covered the last two breaks. She doesn't only look after my wife, she cleans the house tidies up the cupboards etc. The house is immaculate.

The other advantage of using a different care agency is that it keeps the other company on their toes.

[Spiralsparkle in reply to kenh1]

Thanks for the information. It sounds like it has worked well for you.

I've found it hard to find anyone to do 24/7 respite break live in.

[kenh1 in reply to Spiralsparkle]

The company I use is a franchise 'Caremark' so maybe also in your area.

Another company with a good reputation is 'Stay at home' they charge more and pay their staff more and consequently have more 'Outstanding CQC reports than any other.

Our local Caremark is run by a friend of my son so I have to declare an interest. I am only basing my answers on my own experience and hearsay from others who have used their services.

[Spiralsparkle in reply to kenh1]

You have given me those names before but unfortunately not in our area.

[kenh1 in reply to Spiralsparkle]

That is interesting about the night sits, our local hospice also offered night sits one night a week. I was very uncomfortable having a stranger sitting in the house while I was sleeping and on the one occasion they called out the DN's I was awake throughout the visit. Eventually they agreed it wasn't working.

[Spiralsparkle in reply to kenh1]

Our hospice unfortunately does not offer any respite services. It is a shame as Mum is comfortable with the hospice staff.

[kenh1 in reply to Spiralsparkle]

Our hospice also doesn't offer respite services I wish they did.

[Kevin_1 in reply to Spiralsparkle]

Hi SpiralSparkle.

They cannot agree you need them and then refuse to give them. The regulations are simple. Expense is not a consideration. All health needs must be met. The health needs are determined by a needs assessment.

However in the real world I do worry that pushing the CCG too hard might result in them offering a less desirable option such as a nursing home. I would wait for the service to get established and then go back later, when you need to and say you are not coping.

[Spiralsparkle in reply to Kevin_1]

They are already pushing for nursing home now, hospice, social services and the CCG. I'm standing my ground but they have already stated 4 calls is the Max and anymore goes over a financial threshold and will then be nursing home. Is

[Kevin_1 in reply to Spiralsparkle]

They can't force a Nursing Home onto you.

I think some folk get four calls and a community nurse (or community Hospice Nurse) visiting in the night. The community nurse is not part of the CHC. So you could ask for that.

The danger is that they decide that they can't fund in the community because they believe it to be to high a risk and they should not be complicit with something that they think is dangerous.

It must be very anxiety provoking.

Ask about community nursing for night calls.

Good luck

[Spiralsparkle in reply to Kevin_1]

They have said needs can be met in community so if someone suddenly changes mind on that I will be asking why the sudden change when you keep telling me she is stable. The hospice won't fast track even though community matron thinks should be. She can't over rule them as she in hospice care. She is away now on holiday for a few weeks unfortunately to help fight the battle

[Kevin_1 in reply to Spiralsparkle]

Yes, they should only change their mind if there is a change in need or risk.

It sounds like they are respecting you wishes though.

It is strictly forbidden that the NHS even mention money. They are not allowed to put a financial cap on care at home with a home being the only provision when that cap is reached. Sadly it is happening a lot. We had that, but we had reached the point where a nursing home was the only option.

This is a lot to bear on top of the care.

All you can do is to stay calm and carry on until the community matron returns.

[Spiralsparkle in reply to Kevin_1]

They want a DST review before she returns...I wonder why. I trust no one or the system as we have been led a Merry dance for two years and I've had to fight for everything.

Money is always mentioned to me..Have you got a suggested sentence I can quote to them to let them know I'm not accepting what they say?

Mum may need home too , her wish is to be at home as like many others and for now they have said it is doable so I want to try again to see. If her behaviour starts to get bad again then I may have to reconsider but hopefully change of med regime will have helped her.

[Kevin_1 in reply to Spiralsparkle]

You do not have to accept their review date. It is highly reasonable to ask them to wait until the matron returns. Does the matron attend the DST review?

I tend to let the money thing go over my head and re-focus them on clinical need.

They do know money is not permitted as a consideration. It's engraved into their minds... They are being naughty.

You could say "of course it's not permitted for the NHS to take costs or finances into consideration and that the National Service Framework makes it clear that only clinical need can be considered."

But they are still thinking costs! I guess it will shut them up on money talk at leasr and show them you know thee score.

Seek to put the DST off. They are supposed to give you reasonable notice of the DST so that you can arrange for support to be present.

[Spiralsparkle in reply to Kevin_1]

I'm being pressured by hospice to have it done now as they need the bed.

[Kevin_1 in reply to Spiralsparkle]

How long before the community matron returns?

If it is just a day or two, hang on... if it is up at then ten day mark well , beds are precious.

How about a compromise?

I would tell them that this is a major life changing decision and could they transfer him to a nursing home on a respite basis until you can get advice and support?

You have the authority to discharge him from the home whenever you like. So you are not weakening your position. That would also give the community matron to see him in the home and assess the viability of him coming home before the DST takes place.

Any good?

[Spiralsparkle in reply to Kevin_1]

She isn't back until 20Th August. She has tried to get the hospice to fast track and is fighting our corner so that is why I'd like her there when everyone comes together. She did tell me she would talk to the CCG before she went away as hospice aren't budging in not doing fast track.

I will make it clear no decision is made until the CM is able to give her input . The Admiral Nurse has said she will also support to get CHC but at end of day the CCG make that decision.

I had an interesting conversation earlier with a complex care agency who have told me our CCG is one of toughest in country. If we lived in the main county town, different CCG and he said would be a whole different ball game and they do help to support patients fully.

[kenh1 in reply to Spiralsparkle]

We've also discovered that they will only pay a minimum rate for nursing homes and therefore you are limited in your choice. I was told by one nursing home they wouldn't let you top up the rate, but I was told by another home that sometimes they did. Very confusing. Regarding the care companies as I was typing my reply I was thinking 'I've been here before. In some respects I am looking forward to the revue in two weeks time and hoping they haven't moved the goal posts.

[Spiralsparkle in reply to kenh1]

Yes I keep getting told different things about top up fees too. No one seems to know their arse from their elbow.

Good luck for your review

[Kevin_1 in reply to kenh1]

Top up fees... the dodge they use:

The CCG book beds in advance and pay for them even if they are not in use. But they negotiate a lower level of fee for them. This level tends to be the bench mark of what they are willing to pay.

That having been said some homes offer extra services, entertainment, better food, nicer environment and these are seen as non clinical extras. So it is that if the user chooses one of these more expensive homes then a top up fee is legal.

caretobedifferent.co.uk/car...

Good luck with the review.

[Helen119 in reply to Kevin_1]

Hi all

Brilliant and informative conversation going on thank you.

I have a question

Can they force Colin into a care home for any reason against Colin’s or my wishes?

Thank you xx

[Kevin_1 in reply to Helen119]

No

As long as he has capacity, or if he doesn't you act as 'Best interest decision maker', then they have to abide by your decision.

However it is possible that they declare the risk of providing care at home as being unmanageable. They then might say they can't fund home care because they are, by implication, concurring that such care is sufficient.

At that point they might say, "We can't fund at home, but we will fund a nursing home."

If you were desperate to keep the person at home you might ask them to specify the specific problem risks and the specific care that would be needed to obviate them. This is the language they use and the way they are trained to think.

I could cite the Deprivation of Liberty Safeguards legislation... But in essence they would have to remove you as the 'Best Interest Decision Maker' which would involve going to the Court of Protection... Last time I checked that would cost them £250,000... It's not going to happen. And there would have to be overwhelming grounds of him being at serious risk in order for them to win the case.

[Helen119 in reply to Kevin_1]

Thanks Kevin I knew you would know, the only reason I ask is the hospice said last tine Colin was in, if he becomes anxious again we may need to think about looking for a home for him. But his anxiousness was over one problem and I think they were think he was so anxious that it was causing him to shake, but that was his spasms and they weren’t listening to me. Just worried me abit if they were able to force the issue. But thanks I think you have put my mind at rest for now.

Love and hugs and thank you for your knowledge

Xxxx

[Kevin_1 in reply to Helen119]

Glad I could help

This whole area is extraordinarily anxiety provoking.

xx

[Helen119 in reply to Kevin_1]

Yes it is, looking back they could have approached it in a completely different way, it may not have frightened me so much.

Thank you again might go and have a bit of the CBD oil now... and relax...

Love and hugs xx

[Spiralsparkle in reply to Helen119]

I know the feeling of people not listening to you unfortunately. I've been quite shocked the way the hospice have handled the situation with Mum as a whole. Could have been made so much less stressful for us.

[kenh1 in reply to Kevin_1]

Thanks Kevin that does explain the difference, the place that accepted top ups was brand new and very posh. Most of the NHS funded ones are in converted Victorian houses, on the whole well run but hardly fit for purpose. Regarding the review hopefully it should be ok, we have every confidence in the nurse who is carrying it out and as we are now on controlled drugs adds to the nursing element.

[Kaylewis]

Hi just been granted, 2 carers for two hours, morning, lunchtime, evening. Good luck keep fighting it was our third appeal,

[Spiralsparkle in reply to Kaylewis]

That is fab news you have them for two hours at a time. I hope it works well for you all.

This fighting is ridiculous at the time when everyone needs the support the most.

[Kaylewis in reply to Spiralsparkle]

As the swollowing is so poor the feeding takes over an hour, and by the time the toilet is done befor and after the two hours is up.

[dollydott in reply to Spiralsparkle]

I agree Spiralsparkle caring for a loved one could be made less stressful without having to flipping FIGHT all the time for things that would make life just a little bit easier. I hope you get there in the end for you and your mum

You don't need this added stress!!! I'm not at this stage with my mum yet but goodness me I'm thinking I might just crack up if I ever need to deal with what your going through.

Hugs to you Lynda x

[Spiralsparkle in reply to dollydott]

I've felt many times I've completely lost the plot. The system is so wrong.