The Voiceless Ones

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
I put this on another thread late last night but feel it needs a new thread of its own. Talking Point is the one place where we can express our anger, sadness and dismay when things go wrong in the care of our loved ones. However what is so frustrating for me, as Ellie has so eloquently and passionately said, is that we need more than just a place to express ourselves. We need to somehow to get together and be able to take action in bringing such experiences to the powers who can change things. In order to do this we must start to collate these experiences and categorise them. Try to see if any sort of pattern emerges which can be used to constructively change things.

Perhaps we could have some headings on our new Talking Point Website so that our experiences can be recorded and, if useful and with permission from the poster, be used to try to bring such things to the attention of people who may be able to change things for the better. This is not to take the place of individual action but to enhance it. Our collective voice is always stronger than our individual voice. We seem to have recurrent problems in certain areas which could become headings on TP. Eg., headings such as EMI Hospital Wards - EMI Nursing Homes - Social Worker experiences - Medication Problems etc etc. and make these 'sticky' threads somewhere. Individual experiences are at the same time unique but also have elements common to us all at some point in our journey. The TP Factsheets are very helpful but I feel we need in addition a 'campaigning' purpose where our collective voices can be used. I have some free time and have limited skills on the computer which I willingly offer.

Does anyone think this a good idea??? xxTinaT
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
70,717
Kent
Dear Tina,

I have shared your frustration during the last few weeks. Some posts have filled me with despair.

I imagine between us, the membership of TP, we have enough knowledge and experiences to cover the world of dementia from A to Z.

There is a lot to think about Tina. If we do something, it must be done properly in order to be effective. I wouldn`t want anything to be comparable to petitions, which in my opinion aren`t worth the paper they`re written on.

We would also need to find out how the AS feel about it, and so we first need to decide exactly what we want to do, what we aim to achieve and how we set about it. We might then need permission from the AS.

This answer is off the top of my head, and is posted as a carer, who dreads the thought that one day, she could possibly be one of the posters who don`t know where to turn.
 
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117katie

Guest
Brilliant idea

Dear Tina

What a brilliant idea.

I am a relative newcomer to TP, but I have spent hours just reading and crawling my way through other people's experiences. The thing I have found frustrating is that, even when reading a post or thread purely having been drawn to it by a quirky title or whatever, then suddenly halfway down the pages of posts, I find something which has given me precisely the info or pointer about something that I have been scratching my head about.

I suppose what I'm saying is that I think your idea could somehow or other "streamline" experiences, so that there could be a sort of "river map", for want of a better expression, whereby we could all pool or merge specific thoughts about specific experiences. As suggested, headings that provide more of an INDEX to the CONTENTS, rather than requiring everyone to read or contribute to the whole book, some of which may not be relevant to the individual problem being discussed.

Agree too that a lot of thinking has to go into the planning stage. Perhaps if we all started by submitting suggested headings or topics that we have all found it tricky to work our way through. With no further comment at this stage, just a suggested topic - such as SOCIAL WORKERS, or MEDICATION PROBLEMS, etc.

Shall think on this one, if I may.

Katie
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi everyone

This suggestion seems to me, as a member, something that has relevance.

While we are all thinking about it, as a moderator please may I draw attention to a couple of TP tutorials:

http://www.alzheimers.org.uk/talkingpoint/site/scripts/documents_info.php?categoryID=12&documentID=47

and

http://www.alzheimers.org.uk/talkingpoint/site/scripts/documents_info.php?categoryID=12&documentID=46

The key point to take in is that naming of staff or organisations in your experience, good or bad, is not permitted.

The mods are discussing TinaT's idea with the AS just to make sure we have all points covered.

Meantime, please carry on discussing! :)
 
1

117katie

Guest
No Naming Of Individuals/care Homes/nursing Homes Etc

Dear Bruce

No way should individuals be named, nor should specific HOSPITALS/CARE HOMES/NURSING HOMES/NURSING STAFF/CARERS or any other specific NAMED INDIVIDUAL - absolutely not.

It never entered my head to suggest that they should, so please, Bruce, don't be a spoil sport before the possible idea has even got further than just an idea. :(:):):(:):):)

If, and when it gets beyond just the basic thought process, then I am sure a way could be devised whereby A RED HEAD, sorry a red heading, could be introduced at the very top of the message page to re-iterate that no naming of individuals/social workers/doctors/psychiatrists/care homes/nurses/banks/building societies ETC ETC ETC ... is permitted.

It would even be possible for that WARNING PAGE to be displayed before anyone even got a chance to submit a message - I don't know how because I am not a techie, but there are techies out there who would be able to introduce it.

Still a BRILLIANT IDEA!

Katie
 

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
I don;t think Brucie could ever be a spoilsport! I have never met you Brucie but I imagine you as a big huggy,cuddly bear.

There!!! By typing in the above I am doing just what makes us all human on TP by writing this but also making it somewhat difficult to follow a discussion by being diverted!! We are such a 'chatty' bunch that I'm already beginning to think my idea would never work!! xxx TinaT
 

Margaret W

Registered User
Apr 28, 2007
3,725
North Derbyshire
Oh, TinaT, Brucie could definitely be a spoilsport, for the best of reasons I am sure. You are swayed by the name, which sounds cuddly, but really he is a man of steel.

Brucie, you know I am joking I hope? But I don't think you are a push-over!

Margaret

Thought I'd try one of these icons. Did it work?
 

gigi

Registered User
Nov 16, 2007
7,788
66
East Midlands
I think Tina's idea is brilliant-could we have a sticky about computer skills,please?!!!!! I love the icons:confused::D:p:eek: ( Just wanted to see what they look like all together)!!(hope it's ok to mess about and no-one tells me off! ) Have been up since 4.30ish-Eric has had a bad night and I couldn't get back to sleep! xx
 

KatherineW

Volunteer Moderator
Oct 2, 2007
12,654
London
We need to somehow to get together and be able to take action in bringing such experiences to the powers who can change things. In order to do this we must start to collate these experiences and categorise them. Try to see if any sort of pattern emerges which can be used to constructively change things.

Perhaps we could have some headings on our new Talking Point Website so that our experiences can be recorded and, if useful and with permission from the poster, be used to try to bring such things to the attention of people who may be able to change things for the better.
Thanks Tina for this suggestion, and to all for your positive ideas.

I agree very much with the ethos of what you're proposing, but unfortunately I don't think that collating experiences in exactly the way you suggest is going to be workable on TP. I suspect that there will almost certainly be problems in extrapolating from one situation to another, thus I think it may be difficult to keep these areas specific and ‘on-topic’. People could have a wide range of issues to address around any one of these subjects. Maintaining such areas could therefore potentially take up quite a lot of time, in which case it would not be very practical for us to support them.

There are several other ways of putting some of these thoughts into action, however, and getting your voices heard:

•You can use the ‘Search’ facility on TP to find other people who have posted on similar topics: http://www.alzheimers.org.uk/talkingpoint/site/scripts/documents_info.php?categoryID=6&documentID=89
•You can contribute to the Your Story/Talk function on the main website: http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200272
•You can feed back on your experiences of services and your ideas for improving them, by getting involved in the National Dementia Strategy: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=565&pageNumber=1
•The new A-Z section, which TP members have already contributed to, is currently being developed. This is likely to encompass some of the topics that you mentioned.

Many thanks,

Katherine
 

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
Free Speech

Dear Katherine,

I do agree with you. I knew when I went off the subject myself that it wouldn't work! As I said, we are far too chatty a bunch to be constrained by headings. Long live our anarchic but human Talking Point!:D:D Thanks for all the work you and moderators put in. xx TinaT
 

ellie 123

Registered User
May 25, 2006
91
Dear TinaT

My heartfelt thanks for trying.

I have been constantly ill for a few weeks now(all really just stress related but not because of mum's health - but because of all the fighting bureaucracy), so haven't been able to post much. This then stresses me further because I need to be well for mum. And there are many like me out there.

Reading TP, although everyone's circumstances differ, there are certainly common problems that keep appearing in most of the treads.

love ellie