The ridiculous 'system'

[Lucille]

Dear all

Just another grouch and grumble about 'procedural' things and so-called 'care packages' Briefly: mum diagnosed beginning of 2006 after a battle to get anyone to listen. Put on AD meds and then taken off them last year - they disagreed with her. (She has drop in carers for dispensing of other meds twice a day), but CPN support withdrawn. Support worker withdrawn. Now she is getting worse. I was told at the last review meeting we had to 'ring this number, if I wanted mental health team input'. So I did. The person who answered told me to ring either the SW or GP as they needed to refer mum to the memory team. As I had something I wanted to discuss with SW, I rang there. The SW in charge of mum's case no longer works there. I was told to ring the number I first rang. (Are you still following this? ) I explained I'd already done this and was then told to call GP who would refer mum to a consultant. But what for? We know she has dementia, a consultant has already told me this. She hasn't got better.

So now I'm thinking, what's the point? Another conversation with GP about mum getting worse. Another wait for a specialist to re-confirm what we had confirmed two years ago and to be told there's nothing they can do.

I have tried to get mum alternative support from a local charity but she either is still in bed when they come round, or doesn't hear the door, or doesn't answer, so they go away. I've explained her routine at length to them, but ... So I ring again,leave a message and no-one phones back.

'They' go on about allowing people their independence for as long as is safely possible, but they don't seem interested in helping family or carers achieve that for their loved ones.

This wouldn't happen with any other terminal illness. What cheeses me off about this whole episode is this: If I didn't care enough to make contact and mum was on her own, she'd end up totally isolated and probably feature in the newspaper as one of the 'forgotten elderly', because there doesn't seem to be any kind of long term plan for follow up visits, unless they are prompted by a carer, or, I guess a concerned neighbour.

Pah, moan over thanks for listening. Would be good to hear if anyone else has experienced something similar so we can have a group gripe!

 

[christine_batch]

Dear Lucille,
You have put it rather politely what I would say about the system.
Have you tried your Local Alzheimer's Branch?
Fortunately, my husband did have excellent Doctors' and Consultant but and it is a big but, when it came to the Mental Health System, Peter's medical notes went missing for 8 months !!!!
When he finally got a S.W. she was a complete waste of space.
Five years down the track and now my husband has been placed in E.M.I. Unit were he has been for 11 months.
There is a complaint going through because of S.W. neglect.
Why, when we are dealing this this herrendous illness do people make it so difficults for us to get any information, help support.
One thing we do know on T.P. is that we are not alone in dealing with this.
Good luck
Christine

 

[Grannie G]

QUOTE]

but CPN support withdrawn. Support worker withdrawn. ![/QUOTE]

Were you given a reason why this support was withdrawn, Lucille?

Does your mother have a neighbour who has a key and would be prepared to answer the door to enable access?

Love xx

 

[gigi]

Hello Lucille,

There is such a thing as a key safe..a box outside which holds a key..and dedicated carers have a code to type in to get the key out..most local authorities will provide this..or you could contact Age Concern.

Maybe this would help?

Love gigi xx

 

[Lucille]

but CPN support withdrawn. Support worker withdrawn. !

Were you given a reason why this support was withdrawn, Lucille?

Does your mother have a neighbour who has a key and would be prepared to answer the door to enable access?

Love xx[/QUOTE]
Hello all and thanks

Yes the reason I was given for withdrawal of CPN and support worker was that because mum was no longer on AD meds they couldn't help (crazy, huh?).

Re key: Yes a neighbour has a key and so do the carers, but they don't seem to use it (the idea is they call me if they can't get in and let me know - utterly pointless as I live miles away). If they don't get hold of me, then they are supposed to go in, but they don't bother.

Hey ho!

Thanks again
x

 

[Margarita]

So now I'm thinking, what's the point? Another conversation with GP about mum getting worse. Another wait for a specialist to re-confirm what we had confirmed two years ago and to be told there's nothing they can do.

I know what you mean I thought that also. Shall enlighten you what it’s really all about having to go back for another mental assessment what it mean is that every time a doctor or consultant confirms that they is a deterioration progress has happen , they paper assessment report, gets sent to the social services team if your under them . So the care package your mother has to go up.

Its all down to money so unless SS have it in writing that your mother worse they not paying out for more Support No matter how many time you tell them .

If you don’t go back to the consultant or doctor or whoever your mother under social services won’t believe you. That wants proof from someone professional to tell them.

That from my experience from social services who would not listen to me when I told them my mother getting worse I need more purport in helping me to help her. So had to go to the doctor who done a referral. I keep telling social services, but they would not listen to me until they got the letter of the assessment my mother had on her mental health. I was told my mother should have a mental assessment every year, then social service have to up the support.

So if I was you I would take your mother to see the memory nurse, then they can make a conciliation if your mother safe to be living independent or not if they feel she is then SS have to up the care packet their giving your mother, but they do welcome your input on the assessment if you feel your mother not capable to live alone so tell them what you feel. Then in the report to social services they can tell them that


If you don't mind me asking are you self funded or not ?

 

[Tender Face]

Oh Lucille, don't start me off - well go on then ....

My one wry smile in the most awful day today was ringing the GP's surgery to be told 'Wednesday is not a good day (for getting a home visit) because they (the docs) have a management meeting.' How I stopped myself querying whether patients registering in the practise were fore-warned only to be sick on Mondays, Tuesdays, Thursdays and Fridays ........

But the Memory Team ...... ? They take some beating when it comes to the 'bizarre' ....... Considering they are the supposed 'experts' I have more gripes about them, their procedures and protocols than any other professionals involved in mum's care - mind you - there are a few 'close seconds' at the moment .......

Totally agree Lucille ...... it is absolutely frightening to consider what happens to those people who have no-one to look out for them .... when I consider the amount of time I - and no doubt you and many thousands of others spend - just trying to 'co-ordinate' services whether locally or not ....... who takes on that role when there is no relative/friend to do it?

You take care, and gripe all you like!

Love, Karen, x

 

[Lucille]

Hello Margarita and Karen

Margarita: Thanks for your response, it's really helpful to know why they do this - though am not totally sure I 'understand' it - but I guess ours is not to reason why. It just feels a bit like Groundhog Day re-visiting things we've already done - but needs must and all that ...

Karen: Smiled at your 'only be ill on Mondays, Tuesdays, Thursdays and Fridays ...' next time ask if it's OK on a Sunday morning (early doors) Oh aye, can you imagine that?!

I will ring GP (who freely admits to "not knowing anything about dementia") - well, hello, how about visiting this site, then doc? I'm just hoping it doesn't involve me taking mum to see him. I'd prefer a telephone call. Otherwise, you can imagine it can't you:

Doc: "Hello, how are you?
Mum: "I'm fine. Don't know why I'm here. She's always fussing. Can manage perfectly well on own."
Doc: "But you're losing weight ... etc etc"
Mum: "I just eat less now I'm older"
Doc: "True."

Then they look at the gormless daughter with steam coming out of her ears. Oh what joy, let's bring it on. I'll let you know how it goes.

Thanks, again xx

 

[lesmisralbles]

Group Gripe

I am all for that.
Will not bore you with mine. Beleive me, there are many.
Doctor's, do not ring you back
SS do not ring you back
Carer's services - still waiting for the call
The list goes on.
BarbX

 

[AnnS]

System shortcomings

Lucille,
I think you've summarised what I found. GP referred mum to community mental health team, CPN assigned, social worker assigned. CPN only involved to ensure no problems with Aricept. Mum gets worse social worker about to put case on "back burner" as situation stable! I basically collated evidence of all the things that were going wrong and arranged a review with the social worker and CPN. Part of my job involves doing risk assessments. So I literally sat and presented it in that fashion. I highlighted that the care plan wasn't working (same problem mum not staying in) and there was nothing else that would mitigate the risks I had presented. Fortunately before I mentioned the duty of care aspect the CPN agreed with me that mum couldn't stay at home and she is now in a care home. But yeh its the family that have to drive it forward and say "no, mums not safe" To be fair I didn't have to push the CPN and social worker too hard but I did have to be proactive to get things done. What about the people who don't feel confident to push health care professionals or indeed present their own risk assessment!
Stick to you guns is my advice and don't take no for an answer!

AnnS

 

[x-lauren-x]

Oh i totally agree with you!! This is exactly what me and my mum went htrough with my uncle- he had the drop in carers as advised by the hospital but they were cancelled so that was the end of that! So it was back to SW who was lovely, however although she could see, just like us that my uncle was not managing because he refused help and was not classified 'unable to make his own decisions' she could not actually do anything until and'emergency ' occured- then she would be within her rights to take th eappropriate action to help us. She said how totally fustrating the system is and was exceptionally supportive to us as a family however her hands were tied because the 'system' specified no action could be taken unless he was declared 'unable to make his own decisions' the whole situation was totally ridiculolus- particualrly when my uncle was foudn wondering late at night not knowing where he was, he was taken to hosptial and declared unable to make his own decisions- now its a whole new playing field! this is exactly like what you wwere saying- we can care and look after our relatives/friends but the system wont help until they end up in a tricky situation- how they would be if they recieved no help from friends/family. Its almost like the system is encouraging people not to care- if we take a step bak and there is a crisis it springs into action with rules and regulations but if we try to care and help out then its tough luck we're on our own!!!
hehe -you're not the only one having a moan - me and my mum know exactly how you feel! there are the most fantiasitc carers/SW out there they jsut cant do what they need to because of the 'care system'!
hope you are having a good weekend love lauren xxxx

 

[Lynne]

you can imagine it can't you:

Doc: "Hello, how are you?
Mum: "I'm fine. Don't know why I'm here. She's always fussing. Can manage perfectly well on own."
Doc: "But you're losing weight ... etc etc"
Mum: "I just eat less now I'm older"
Doc: "True."

Then they look at the gormless daughter with steam coming out of her ears.

Just wondering how many others, like me, are reading this and thinking "Yup, been there - done that."