Action for Carers

[emscub]

I know this has more than likely been suggested and possibly done before but is there no way that us carers can get together and decide to try and DO something about the way we are so often treated by the Social Services?

Any ideas?

There are so many of us, and right now I am feeling so resentful about the way we are just left to cope with so much that I feel in need of some action!

 

[Norman]

Emma
the subject was raised time back and we decided that we needed a champion/s for our cause.
I did ask recently if any thing ever happened to the suggestion but no one seemed to know.
I think AS are doing something like it.
Norman

 

[storm]

Dear norman,i answered to your question about carers chamoion on magics thread about help needed. We did talk about this before and very nearly got it off the ground but i think we all got tied up with the problems caring full time brings and speaking for myself i ran out of steam, do you think this is what the powers that be are banking on that we will all be to darned tired to fight? storm

 

[Jude]

Dear Emma and Storm,

I'll do a bit of research and see if we've made any progress.

Jude

 

[Anne54]

Hello All
Is anyone else going on the protest march in London on the 16th March?
Reminds me of the sixties, not that I went on any then but this is important.
Anne

 

[Jude]

Thanks Anne - you beat me to it........

Information for the March can be found on the AS Home Page at www.altzheimers.org.uk.

Jude

 

[storm]

Dear Anne, I have not heard anything about it but it would be the same old story to busy and tied up caring.Was looking on the gov health site and there was Ladyman spouting that the aim i s to give carers rights to have time to pursue studies hobbys and work well i am telling you man you are not aiming straight because you have missed me out on all three i am lucky if i can find time and energy to post here and i am sure there are lots more in the same boat and i feel its rapidly sinking!storm

 

[storm]

Thanks Jude you are amazing answerd my my question while i was typing it.Where can you see who is online at the same time as you on this new layout? storm

 

[Jude]

Hi Storm,

At the bottom right hand side of the thread page you have the 'Forum Jump'. Click on that and then click 'Who's Online'. You will get a list of 'who's on and what they are looking at'.

Er - just HOW does Stephen Ladyman propose to instigate this amazing plan? Does he have ideas to alter the Gregorian calendar so that we have 12 days in a week instead of 7? Oh goody, that will give me an extra 5 day working week and I can use my salary to pay tax, the NHS contribution and pay the Agency fees for an outside carer - as well as feeling really proud that I am participating in the Government's new Job Creation Scheme. Do we all get a free supply of No Doze tablets, or what?

Perhaps we will be encouraged to study and enjoy hobbies in our sleep [what sleep?] Yeah right, Subliminal Spanish for Carers; Snooze Your Way to Successful Cake Decorating; Create a Dream Garden; Speed Reading Techniques with Rapid Eye Movement.

I can hardly wait..........!

Have you got the Govt Health Website details. I could do with a good laugh.

Jude

 

[storm]

Hi Jude, get ready to laugh your socks off, i think i have done this right dont forget to go to the home page and see blue eyed tony http://www.dh.gov.uk/PublicationsAn...esNotices/fs/en?CONTENT_ID=4086091&chk=sGG9z1 storm

 

[Chris]

What does CARER mean ?

Cant help thinking that it isnt just when you have dementia that communication is a problem.

The following is thinking out loud - nothing carers dont know - just practising really !- for when there is an opopourtinity & what do you think please?!!!

Take the word 'Consultation' for instance - especially when Local Councils use the word .... No! I wont go there just now !!!!

More to the point the word CARER - it can mean things as different as chalk as cheese.

For some it can be looking after children with a disability - who go to school term time - leaving the parent with a few respite hours each day but then having to care full time 24/7 in the long school holidays (try finding a proper job around that !)

To most people on TP CARER means caring for someone 24/ 7 every day ,of every year.

It can mean "These walls (much loved home for over 50 years) have become like a prison" - my Dads words (Oh the guilt - why didnt I relieve him more ?)

It can mean "I feel as if the world has turned its back on me" (My Dads words too) .

It can mean that without a trip out, away from the caring role for just a few hours once a month "theyd have to come & take me away - knowing I've got that to look forward to keeps me sane".

When politicians talk about CARERS do they really know what the word means - what picture does it conjure up in their minds - if its not a true picture - how can they be expected to making the right decisions AND how can we educate them ???

Until people have been confined to their own home - and hardly having any time for themselves , due to the total demands of the needs of someone else plus all the usual daily jobs & responsibilities plus increasing health needs of the person being cared for and possibly their own increasing frailty or ill health - can you start to know .

I think the unsupported 24/7 aspect of caring has to be emphasised to get the message across. Isnt it that the creates a lot of stress & all the worry - what will happen if .........

In some cases - usually when a near crisis situation has been reached - a very good package of care suddenly gets put in place & the couple can often live comparitively well - it alwyas begs the quesetion - why didnt this hapen before .

It seems we need more of the good services that exist in pockets around the country - so not rocket science then, though we could use that too - for a cure and finding causes & prevention - just get rid of post code lottery & fund services a bit better.

Why cant it be done?

 

[Sheila]

Hi Chris, totally agree, ....and speaking of lotteries, why can't lottery money go into the NHS to fund better care for all? I'd buy more tickets if it was the National Hospital Lottery rather than just National. They spend the money on all sorts of things that some of us carers will never get a chance to see or use, decent good hospitals and care funding for all illnesses are needed by everyone. Why can't we do that I want know? Love She. XX

 

[Chris]

Hi Sheila

I think , unfortunately , I heard ages ago , that Lottery couldnt be used for things that are supposed to be provided by Health & Ss etc - not to bale out Local authorities or any other statutory service - I guess in a way that might tbe good as otherwise - where would it end - they would be looking for top ups all the time from Lottery - I dont think the lottery money would just be used for extras or things they couldnt afford - it would start to be seen as regular income .

 

[Jude]

Hi All,

Thanks for the website details Storm. I'm looking forward to it....!

Chris - One positive way to 'educate' the pollies would be to challenge a few of them to take over as a 24/7 carer for a week. That might just get rid of their attitude problem.

Jude

 

[emscub]

As Chris was saying, it does seem to be so frequently the case that services are provided once crisis point is reached. No longer do the Social Services provide support at the point of need but on an emergency basis. Whoever is in most need (and shouts the loudest, as Norm so often states) gets the support.

 

[Sheila]

Hi, has anyone seen the front page of today's Daily Mail? I am sure this has a lot to do with it, God help us all!!!! ....Love She. XX

 

[Jude]

Dear Sheila,

What was in the Daily Mail headlines? Bit difficult to get it over here.

Jude

 

[Chris]

Idea for educating

One positive way to 'educate' the pollies would be to challenge a few of them to take over as a 24/7 carer for a week. That might just get rid of their attitude problem.

Jude

YES ! YES!

there was a series on tele where Managers exchanged places with staff who worked on the 'shop floor' - wouldnt it be enlightening - on both sides- if a carer and a SS Manager (or whoever) could swop places - In reality of course that wouldnt be good for one of the two most important people in all this - but wonder if we could think creatively and do it slightly different with same end result.

This could be SHADOWING maybe ??? - where a manager would be a carers shadow OR a person with dementia's shadow for a day or two. Similarly a carer could shadow a manager . Lot of thought obviously & carefull planning & consents of all parties needed & there would have to be a lot of faith & trust & risk taking - but woudlnt it be worth it - espeically if a TV film etc etc came out of it ??

We desperately need the true situation to be known - how else can we do this?? There has been much written by carers already, IRIS the film , documentaries etc but seems to be planners, developers, managers etc still dont appreciate the true needs, situation etc of people who live with dementia or the consequences of it.

Wittering again !!!!! Its the sheer frustration of not knowing how to proceed that does it !!!!