Care Plan and Direct Payments

Lucille

Registered User
Sep 10, 2005
542
Hello all

Have just had a review with mum's CPN, support worker, SW and agency carer and am still trying to get my head around it all. Would appreciate your views/experiences.

Briefly: mum lives alone, drop in carer for medication twice daily, has recently been taken off her AD medication.

During the review the CPN announced that as mum was no longer on AD medication, she and the support worker would be withdrawing from mum's care with immediate effect. This really upset me as they have been great and mum and the support worker really 'gel'. To add to this, the new SW who has just been assigned to mum, suggested I think about Direct Payments for mum's care plan instead of the agency carers we have now. This is so that I can manage mum's care. I was quite shocked and surprised at all this, especially when I asked who do I call to talk about mum when she goes into decline. 'Ring this number, it's a single point entry CHN'. Huh?! Is that the same as 'one of our helpful advisers in Mumbai will help you ... press 1 if your loved one is wandering, 2 if you have an incontinence query or 3 if you haven't a clue and need advice ... I'm sorry 3 is not available at present.'

So, now, I seem to be left with the unenviable task of becoming an 'employer', sorting out timesheets and PAYE. Whilst I appreciate that the Direct Payments route might be more appropriate for mum's care in the long-term, it's not going to be, as was suggested, 'getting a person in who can get to know your mum.' Surely, I'll have to get 2 or 3; they can't work 365 days a year and what if they're sick? I have a pile of info to digest so perhaps I'm putting the cart before the horse, but it is the prospect of completely wiping out what was seemingly a reasonable-in-the-circs arrangement, to starting all over again. I was also informed that the charity providing 'buddy' services, which I thought might be a suitable replacement for mum's support worker, does not CRB check anyone, so I could be leaving her exposed to anyone!:eek::eek: I don't live near mum, so the logistics of setting all this up will be 'interesting' to say the least... interviews? probationary period?!! Nightmare.

Any views on Direct Payments or the withdrawal of CPN/Support Worker because mum's no longer on AD meds. And can anyone translate 'the Single Entry CHN' I know I should have asked but I felt like I'd been slapped and just couldn't get the words out. (Not usually a problem I have and re-reading this post, I guess you'd agree!) :)
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Lucille.

I'm afraid I can't help you with CHN, I've never heard of it. I tried to google it, but didn't come up with anything remotely relevant. Hopefully someone will have some info.

The withdrawal of CPN is fairly common when medication is stopped. They come under the NHS, and are usually assigned to monitor the effects of meds. In fact, we never had one, though John was on AD meds. Here, you only get them if there is challenging behaviour! I don't know about the support worker. Is she NHS (in which case the same would apply)? If she's employed by SS, I would have thought you would have kept her.

Direct payments are brilliant if there is a relative or close friend who could help with your mum. In fact, Grommit has be desperately trying to get them, and can't. See

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=8234

But if there is no-one you know who can take over, it's going to be very difficult for you. I think you should talk to SS and see what sort of care package they can put in place for your mum. As you don't live near, I would think this would be much safer, as SS would have to monitor it.

Hopefully others will come up with some suggestions for you.

Love,
 

Tender Face

Account Closed
Mar 14, 2006
5,379
NW England
Any views on Direct Payments or the withdrawal of CPN/Support Worker because mum's no longer on AD meds.
I think I need to go lie down in a darkened room - I thought mum had a CPN assigned because of mum's condition - NOT to do with the medication she was prescribed ...... so, have I got this right? At the point it is decided the medication is no longer effective, we don't need support? (Is this why someone else just recently has referred to the 'Aricept Nurse'? All makes sense now .......) At the point it is agreed the medication is no longer effective do we not need the MOST support trying to support independent living??????

And I will be checking on the CRB checking of 'buddies' first thing tomorrow ...... yikes!!!!!!

Sorry Lucille, your travels are a few steps ahead of me and I am learning from you ...... unbelievable ....... (will pass on any 'local knowldege' relevant to your mum, of course)

Much love, Karen, x
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Karen, please don't take what I have said as gospel. As you know, I'm in Scotland, and different areas have different systems. Doesn't hurt to check though. I didcovered when John was ill that I just didn't have a safety net. If I'd known in advance, I'd have set up my own.

Love,
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,743
Kent
Dear Lucille,

Someone is passing the buck here. Your mother is a ratepayer in her area and should be entitled to care. You do not live locally to her and even if you did, should not be held responsible for her. Direct Payments mean you have the responsibility, as you know.

This is how I think, not what I know, so can I suggest you phone the AS Helpline tomorrow, just to find out what the position really is.

I`ll not say anything else, as I`m fuming.

Love xx
 

Margarita

Registered User
Feb 17, 2006
10,824
london
I'm in London and in my area Hammersmith Fulham they wont give mum a CPN, as CPN come under the mental heath team , so they tell me that AZ is organic not a mental illness .

Lucky for me I can talk to a CPN , because of my brother mental illness .

I agree with you Lucille as that how I feel about direct payments

So, now, I seem to be left with the unenviable task of becoming an 'employer', sorting out timesheets and PAYE.
they do train you and people find it more flexible but its not what I want , if you don't want to do direct payment they cant force it on you. just tell them you don't want the added reasonability , as it be to stressful for you.
 

Lucille

Registered User
Sep 10, 2005
542
Skye said:
The withdrawal of CPN is fairly common when medication is stopped. They come under the NHS, and are usually assigned to monitor the effects of meds.
http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=8234


QUOTE]

Hi Hazel

Yes the CPN said she was assigned whilst mum was on meds to keep a watch eye and the support worker also, so that they knew what mum was up to, eating/out and about etc and reaction to meds. But it just seemed odd that now, when she is starting to decline, this is taken away. I will look into the thread you mentioned.

Karen, sorry to alarm you about 'buddies' but I must admit I did think of you as I know you've treasured this source of help and I too have been active in trying to involve them with mum. But yesterday when I was told that, I thought, blo*dy Nora! :)

I've just watched the video 'Direct Payments' ... whoah, how exciting was that! Anyway, it seemed that a lot of people on there had carers who were family and that's not an option for us. Having watched it I now have more questions than I did beforehand. So, listen up for Direct Payments: The Sequel! I will update you when I have some answers. Meantime, am still well cheesed off about 'losing' CPN to this mysterious single point CHN "number" !!

As usual, thanks all for your replies, much appreciated in this sea of untranquility. xx
 

Clive

Registered User
Nov 7, 2004
716
Hi Lucille

Just like to say mum lost the CPN 10 months before she had her Aricept stopped. He said he could do no more to help her so wouldn’t be calling anymore. We never ever had a support worker. I was left to organise my own carers.

Like you, I thought it odd that the CPN was removed just as things were getting really difficult.

All the best

Clive.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Lucille, while I also have no idea what a CHN is , I am 99% sure that while direct payments may be offered you do NOT have to take them. As you point out, you (and a lot of other people) have enough on their plates without becoming employers.
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
I have never heard of a CHN or a Community health nurse.
We used to get a call about every 3 months from the CPN.
There were several CPNs on the team,but only one specialising in Dementia.
Norman
 

Lucille

Registered User
Sep 10, 2005
542
Thanks, Margarita for unravelling the CHN. So I guess, the 'single point entry CHN' is one number where whoever is available deals with the query at the time. Not a very personal approach, is it?!

Hey ho. As mentioned, will report back when I have spoken to the Direct Payments squad at mum's LA (Local Authority!!) :D

xx
 

Lucy O

Registered User
Jul 4, 2005
26
Direct Payments can be great!

Hi Lucille
Haven't had time to read all the replies to your thread in detail, but just wanted to encourage you and say that I have been having Direct Payments for my mother's care for the last 5 years and they have worked out brilliantly. We have been really lucky, I know, and had one excellent independent carer for those 5 years, who does half the work. The days when she is not in, we have at some points had other equally good independent carers, but sometimes have used an agency for carers - ie you don't have to do all the police checks, interviewing if you don't want to, you could just go through an agency. The great thing about Direct Payments is you can spend it how you want. The paper work for the Direct Payments, once it is set up, is really quite straight forward. I'm hopeless at form filling, but I manage it!
Incidentally, our Social Worker decided about 4 years that there was no point the CPN coming to see my mother anymore as she (the SW) didn't think there was anything the CPN could do with her - this was news to the CPN.
Hope this is some encouragement to you.
Lucy
 

Lucy O

Registered User
Jul 4, 2005
26
Hi
It all seems so long ago I can't quite remember who applied for the direct payments, though I'm sure that my mother had nothing to do with it - she would never admit she needed any help.
I think it came about after discussions with her social worker who, for once, said something useful! She had assessed Mummy as needing 24 hour care and I think that she made me aware that once my mother's savings went below a certain limit she would be entitled to help from social services and that one way of getting help was through direct payments- particularly as we wanted to keep our independent carer. Therefore as soon as we reached the limit I went for it! All the letters etc are addressed to Mummy, but put for my attention, obviously! I set up a new bank account for the payments to go into - it's in my name and the payments are made into it.
Hope this info is useful, do let me know if other queries about the payments and I will try(!) to remember.
Sorry if this post a bit waffley!
Lucy
 

Lucille

Registered User
Sep 10, 2005
542
Dear all

Thanks for your responses. Having gleaned information from the very helpful people at Direct Payments I have decided to hang fire for the moment. What they did say was that although, on the face of it, it seemed a good idea, it would not be as easy to manage with me living such a distance away. Most people, it seems, know someone locally or have a good friend or neighbour whom they employ. I will continue to give it some thought, but for the moment, will stick with the current arrangements. I feel guilty as maybe a personal assistant (or two or three) would be more beneficial for mum, but frankly, the thought of interviewing and managing the whole process from nearly 200 miles away and keep on top of what mum is up to, doesn't fill me with awe. Also, I wonder just how much it would upset her routine and whether this would have a detrimental effect? For sure, at the moment she doesn't always let the carers in, so I can't see this changing with a new set of carers, the more she deteriorates.

I hope my experience has been useful for some of you. Margarita, you were correct in that it's not something that can be forced upon me, so thanks for that. (Still wish mum and I had some input from CPN and support worker, though:( )
x