Are the district nurses right?

I think the visits should be spread out more. The lady a couple of doors up has 4 visits per day. The 1st one at 7am and the last one at 10pm she lives on her own and is bed bound.

Thx u JZ x

Hi

There are two issues here... (Aren't there always more problems than we expected?)

I am busy reading a manual on the CHC system at the moment... in another week I would have a definitive answer! This looks complicated, but there is a 'cut through the tape solution' t the end.

I assume the care is paid for by the CHC... If carers are coming in it will be so.

First off the DN is not the one controlling the care unless they are the Care Co-ordinator. .

Technically it is the Care Co-ordinator acting on behalf of the purchaser who is the Commissioning Group. Most people don't know the name of their care co-ordinator because with short staffing they are seldom allocated one, despite it being a legal requirement.

If the D.N. is the care co-ordinator (unlikely) they have to listen to your wishes and saying they can't spread it put is utter tripe.

If there is no care co-ordinator you could telephone the Commissioning Group. This is the person who came and assessed on behalf of the Commissioners. Tell them you are going to telephone the agency and change the times... But I wouldn't and didn't bother.

I just telephone the agency and tell them what I want. They did say they needed to check it and I merely pointed out that I am the customer here. They did it. Actually I change things quite a bit... Liz get's tired more easily I asked for the morning call to be put back and hour and they now just do it. (We look after the carer's and praise the agency - because they are good and things become easy - but you know all of that stuff. Hold your ground no matter which route you take... Explain the 'why' in terms of your loved ones needs and they do not have a case to refuse.

There is no legal limit to four visits! The law states that the NHS must provide care to meed the clinical needs of the patient and this is defined by the Needs Assessment... That's the one the person visiting from the Commissioning Group did. Quite a few Commissioning Groups make up their own rules... these are illegal! Amazing, but true.

What we are in the process of doing (and its easy) is moving Liz's CHC over to a Personal Budget... For some reason Commissioning Groups like this. ( I think they have difficult to meet targets in this area.)

Simply put the Commissioners give you the money directly and you spend it as you like within the agreed Care Plan. You pay the agency and keep the receipts to prove you have spent the money properly. The process means developing a new Care Plan (but the current system keeps running whilst all this is done) and the new care plan should include up to four respite breaks in a Nursing Home. While we were at it we asked for extra hours for carer's to increase the service and even more so I could have a half day off.

It does mean paying bills, but it also means you could use some of the Respite Care portion of the money against getting carer's in for the day if you need to. In other words you can spend the money where you want as long as it is in the agreed areas of need. We were on this system, but something went wrong and we got moved across to the Direct Payment system that your on, by mistake.

Just ring the commissioning group and ask for a new assessment of need and say that you want to move to a personal budget... They know these terms and should put it into (slow) play.

I do hope this makes some sense... It's late and my brain is running on vapour!

Do come back if you want anything clarified.

Cheers n good luck

Kevin

Wow I'm impressed . I may not be from the UK which means CHC does not apply to me, however reading a manual of that type deserves respect across the borders! right on K1

1

Thanks AVB

Chuckles... I was an NHS clinician / manager... If you only knew how many 500+ page documents on best practice, law and policy I have had to digest. And that is before the compulsory continuous training and clinical papers... How did I ever get time to see patients really is beyond me

The system sets very high standards, but is so woefully under resourced.

But now I am on the other side... this forum and our predicament has taught me so many things I just didn't quite get.

I guess I am cross and if I can use what I have to make the system work from this side I will. Harrumph lol.

Today was a good day in our house... hoping tomorrow too.

Hugs

K

xx

You could be this sites lawyer/counselor. I have personally deemed several with specific titles just for fun based on the wonderful skills ie Georrgepa author writer poet. NannaB wise sage, Mind0vermonky researcher/librarian so now this is yours...It's all a compliment to your abilities!

K1 Lawyer/counselor

Ditto!

I now have a bucket over my head... chuckles, embarrassed and so pleased the stuff I write is sometimes useful

And your title goldcap?... you do so much good here... we all do.

Together we make this forum very good indeed.

i agree k

lol jill

xxx

Waiving to you... You are always in our minds here

Liz and Kevin

XXX

i agree g

lol jill

xxx

Wow wow wow Kevin!

You are absolutely wonderful and very very clever being able to retain all that info! I couldn't lol

So thank you!

I'll be interested (very) to hear more finding when you've completed your reading!

So if we do this direct payment thingy does that mean we have to become the employer and start do tax and national insurance?(cos that does not appeal to me)!

And no we don't have a care coordinator but I have had to telephone the commission before to change agencies

I'll be interested to hear if the hours/visits can be increased once you've finished reading!

I think the doing it yourself bit sounds good just dunno if I'm up for extra complications

Life as it is seems very complicated and stresses me out regularly (you've probably gathered that lol)

I really cannot thank you enough Kevin

Big big hugs x

Kevin

I've spoken to the care agency who will 'try' and space visits back to every 4 hours

I have spoken to the chc commission whose response to 2 more visits every night was 'Mmm' ie unlikely but they 'might' be able to offer 2 nights a week and they will look into Marie curie. They will look into 2 afternoons per week of 4 hours respite for mum. I said 2 new nights a week isn't very helpful for carers as that could still mean 5 nights of getting very wet!!

I asked about us being in charge of funds etc, he claimed to have not heard of such a thing?!!!!

I won't be defeated and will try to keep pushing!

Anymore of your advice greatly appreciated!!

X

Hi Satt2015... Were you talking to the cleaner? lol

They are so naughty (naughty = more sailor language than you would care to hear)

'Personal Budget' is the phrase... you need touse that... and if they deny knowing that one... ask for the PALS number... That is the equivalent of pouring petrol all over their work room and standing their with a match... Patient Advisory and Liaison... They are there to stop complaints... they are the NHS will get it right Police... They are friendly and helpful... Usually saying that you feel you have no option to get advice from PALS does the trick. If not I can give you other 'motivators' (all the way up to friendly warning nukes actually).

Sorry I could not get back to you earlier... that caring thing y'know...

You asked about how difficult or time consuming it is... Well it isn't really.

You need to set up a new bank account that is only used for this money. You keep the statements for them to match with receipts for spending. You pay the bills... and that is it!

They pay the money into the account and the Care Agency sends you an invoice... you pay it... simple. If you do online banking it gets even easier.

The key point is that you make the decisions on where you spend the money. If you have money for respite and you want to use it on carers... just do it.

Really it is that simple.

I really cannot recommend this enough... if you are OK paying the bills and keeping the receipts... no accounting required.

There is alos no N.I. or tax involved unless you decide to spend it on carers who are not registered companies... like a neighbour... and then there is help to do that too... but I wouldn't go there myself.

The trick is to get them to do a care plan (or re-do) and get them to agree to increased services when they do that... The increased funds will give you the wobble room.

Also, I never accept, 'we will try' from an agency. I am noit putting you down here, I have commissioned agencies for many years professionally. Many will try to sound helpful and not get around to the change. Try hitting the agency with, "I'm sorry that is not good enough. We are talking about meeting the patients needs here. Please phone back within (...) confirming that you can do this. and when" . They know that they are obliged to meet care needs flexibly. Also mentioning that you are sure they can do this because they are approved by he CQC is another little bomb to gently drop. The CQC is the inspectorate... If they don't meet standards their license can be withdrawn.

(The CQC are always keen to get complaints from the public BTW).. and they are powerful, very.

I hope to post a whole pile of notes on this sort of thing in the next coule of months... meanwhile do come back to me.

I do hope this is helpful

Well done for kicking the ball into play - like you needed something else to do?

Best

Kevin

Kevin Kevin Kevin

You are simply wonderful and I can't thank you enough!!

You are a world of information and we NEED you!!

Equally I mustn't forget you are a carer too!! Lucky Liz having you to watch her back!!

Tell me everything you know lol

Keep posting Kevin your beyond helpful!

👏👏👏👏👏👏👏

X

I am totally embarrassed too I wish I were half as good as I would wish to be.

But I am getting so "cross" (more extreme sailor language inserted here) at what the services are deceptively doing.

You and other folk and myself have such a fight!

X

Kevin

Agree Kevin

It's all very wrong when we are already in an extremely stressful situation!

I do wonder sometimes if this were a well known MP or a member of the royal family, how things would be sooooo different?!

Umm... (embarassed)... and GO FOR IT... The struggle you mare putting up is so inspiring.

Hi Kevin

Hi all

Right here we go!

Woman from chc just came out (rather like a sergeant major)!

She hardly allowed mum n I to get a word in!

She agreed to two sits a week of 4 hours each to give mum respite. Re night visits, NO not possible how er (here's the highly strange bit) she offered live in carers! Noooooooo thank you!!!!!

She said she cannot do personal budget it takes too long??!!

She also said cos dad was fast tracked for chc whilst in hospital she will be doing a review in August when the care 'could' be taken away?! What the ****???

I started to cry and was getting quite angry to which she hinted that it might not be taken away!

Now I feel totally deflated, extremely angry and pretty much lost for words!!

Any ideas Kevin? I'm desperate!!

Sorry to keep asking you, I appreciate you are very busy!

😞

Talk about emotional blackmail !!!

Do it back if tears help. Loads of tears if needed.

It makes me so angry.

love and a big hug, Jean x

OK Satt

She handed you a loaded gun - time to use it.

1She has broken the law by refusing to offer an assessment of clinical need. Technically this is 'medicine' She is not prepared to assess before deciding the treatment required?

She has threatened you

You have a legal right to an assessment. Doubly so as

This got sent in error... please ignore - I am re - posting.

5 minutes...

OK Satt

How distressing! (Total understatement)

She handed you a loaded gun - time to use it.

1 She has broken the law by refusing to offer an assessment of clinical need to a patient already under treatment. Technically this is 'medicine' She is not prepared to assess before deciding the treatment required?

2 She has threatened you with the withdrawal of service.

3 She has told you that she is not prepared to cary out her professional duties because she hasn't got the time.

You need to fire off a complaint right away! Doubly so because what this person did to you she will be doing to others.

A complaint will not harm your chances of continued funding. If anything they will make sure they meet the law and give you what you need. I know this from handling myriads of level one complaints in the NHS.

I am more than happy to assist with writing the letter.

P.M. me

Were all with you.

Kevin

Kevin, you are a comfort even to me who has nothing to do with the service issues being discussed. I would be helplessly angry on Satt's behalf, and it is a relief to know you are helping as I can't. Thanks!!

Thanks, us both.

I am b*** furious!

Were that to happen to us I think I might even crack up waiting for the assessment and fearing the future... Caring and PSP is hard enough!

The nurse needs a formal reprimand... (and that is a serious thing).

i agree

l jill

xxx

chc should provide care that is needed no matter how many calls are required. Telephone Chc and tell them you need a reassessment for increase care during the night. caring for our relatives with psp is hard enough without us having to jump through all these loops to get what we are entitled to. Be firm with them you can have more than 4 calls a day xx

Ooh thank you Richmond

I kind of thought that is could be more than 4 calls a day

I'll speak to mum about it later today n then chc direct!

How's things with you? X

Things not too bad Satt mums getting worse on a weekly basis, really struggling to understand her now her speech is so quiet her mobility completely gone now, she has a catheter so thankfully no issues with continence.

I'm taking mum and dad away for a week on Saturday which I'm a little stressed about but it will be lovely to have that holiday together I'm sure it will be our last chance but will have the nice memories when mums time comes, hope you get your dad sorted soon xxx

This site is such a support

Awe bless your mum

This illness is beyond crap and so unfair!

I truly hope you have a wonderful holiday together

Treasure it

Our last break for 3 days for over 2 years ago and although it was hard I cherish the memories

X

To confirm what Kevin has said very well, mum gets Chc funding but only for her nursing needs, the assessment showed that only 40 percent of mums needs were nursing the rest are classed as social so mum has to find that side of it which as we all know as carers psp is 100 percent nursing but I ran out of steam to appeal, sorry gone off on a bit of a tangent what I'm trying to say is care agencies were not working for mum cause of bad time keeping and her complex needs. We now receive direct payment and pay a private carer (it took along time to put in place but it was all back dated) the funds are paid into my bank account I opened a new account just for this, the carer is employed on a self employed basis so she pays her tax/national insurance. Every 3 months I have to provide bank statements to prove how the money is being spent xx

Not surprised you ran out of steam!

I finding everything sooooo draining!!

I've spoken to the agency who will now adjust their times to 8am, 12, 4 and 7pm (they can't manage 8) but I can live with that!

Care agency agree for me to ring chc and get 2 night visits and minimum 2 X 4 hour visits per week for mum to get respite, so that's my next job this afternoon (which I'm not looking forward too)

Thx again Richmond for your wonderful words and advice X

CHC, I am sure it must stand for something very rude. Having read various posts about this over the months it is apparent that there are huge differences depending on where you live. Although the legislation is written down the commissioning groups/ health authorities do seems to cherry pick what suits them.

My F did get CHC for him to temp go to a nursing home prior to comming home. He was in hospital then and all the people involved with his care did their bit really well but it was the process of paperwork and what they were required to do that meant it took 3 months. Now in the home we had to kick it off again. Same problems. The report writers are being made to conduct an assessment according to what the maximum funding they think he will get. I know this shouldn't be and it should be his needs that drive the decision.

It won't be long now and he will be home. The current plan that has been submitted is 3 carers 4 times a day. No night care will be provided. I have already been told that "as we are very rural"(6 miles to nearest town) it is unlikely that this will happen. I have asked for 3 pieces of equipment, bed, chair, shower chair. I am paying for a ceiling hoist myself. They won't pay for a portable shower screen. I am funding the new bedroom/ wet room.

It just takes so long. The business about a coordinator is right. There is never one person who takes on that responsibility. The idea of CHC is good , enabling people to stay at home, but the practice of the written intent is not fit for purpose. And I've been told I live in a good area!

Hi hellebore

You are obviously very experience in this.. so a brief cooment if I may?

""as we are very rural"(6 miles to nearest town) it is unlikely that this will happen"

Were a letter to go into a manager quoting that worker they would be in serious trouble.

As you have said care is based on clinical need and nothing else.

As for no care coordinator, a note for others here really, it is of not matter... keep the focus on the Commissioning Group... they are the ones who have to pay to deliver care to meet need.

It just comes down to how much energy we have to fight and some days just getting through is all I have.

Waiving hello

Kevin

Thank you Kevin. The comment about being rural is one that is repeated by OT, DN and social worker etc. I don't blame them it's because they can't get an agency with enough workers. This is why I have not gone down the direct payment route, if they can't find anyone how am I?

I have raised the question of respite and had eyebrows raised and no comment. I noted your note about this. In reality I don't think it will be possible as F has so much specific need with CBD that there is only 1 home that can take him. The 2 hospices in reach don't do respite.

Thank you Satt2015 for this, I do hope you get satisfactory care and Kevin, it is so good to share our knowledge.

There is one way to get care when they can't... It means work though... You can use a Personal Budget to employ someone local. There is an approved agency who will help you do the Employment stuff like National Insurance, PAYE etc (Sorry I forgot their name, but the Commissioning Group will tell you).

Yes, I have learned so much on this site... sharing is good.