I think this is the information that Leeann is referring to - a 42 page document from the Dept of Health and the Home Office:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4008486
Abuse of our Alzheimer’s sufferers
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I think this is the information that Leeann is referring to - a 42 page document from the Dept of Health and the Home Office:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4008486
No Secrets? Behind closed doors?
The No Secrets document is guidelines only - and open to interpretation and local 'decision making', by each and every local authority, and even Safeguarding Adults 'board'.
When an investigation into 'events that warrant investigation' is carried out by a local authority/SS department/Safeguarding Adults unit and so on, anyone who contributes to that investigation does so on the understanding (implied only is sufficient; it doesn't need to be written) that anything they say is 'given and held in confidence'. That confidentiality is upheld by the ICO (Information Commissioner's Office) and by the Freedom of Information Act - on the basis that it would be impossible to get people to contribute to the investigation if they thought that everything they were contributing would be available in the 'public domain'.
When I - and my family members - contributed to the investigation carried out in my own family circumstances, I never did so on the understanding that my information would be given and held in confidence. I expected and wanted everything I had to say to be heard and distributed, otherwise 'lessons would never be learned'.
But, I was naive then, never having faced such a situation before - because I never for one moment considered that the perpetrators of abuse would be able to give information, claim confidentiality, leave the country, and never be held to account. That was one of the lessons I learned from it all.
The meetings are all held 'in secret', and family even is not allowed to attend. But the perpetrators of abuse are allowed to attend. So family was never able to question the validity of the information presented to the investigators by the perpetrators - to this day, that hurts.
The resulting report is 'confidential' and even family is not allowed a copy of the full report - only an abbreviated summary. It took me nearly 6 months to gain access to that abbreviated summary - it was refused initially; I challenged that refusal; it was refused again ... and on it went, until such time as the local authority took lengthy legal advice. The L/A did everything to prevent me seeing even the summary.
But the perpetrators are all allowed to see the full report, and - believe this one, or not, but it is true: they are allowed to question the draft report, to insist on alterations and additions to the report before it is finalised. Family do not have that same right.
That is, in my view, unacceptable. But I am, of course, heavily biased.
If a Coroner calls an inquest, the Coroner has the ability to insist that anyone is required to attend and to be questioned in public. The Coroner doesn't apportion blame any more than these Safeguarding Adults investigations apportion blame. The only reason for the investigations is to work out what went wrong; where the systems went wrong; and for lessons to be learned. And only the legal system can apportion blame and hold people responsible for their actions.
Sadly, lessons are often 'NOT' learned.
Two links to a current/hot debate over the 'Behind closed doors' debate going on in Essex. (It's nothing to do with me, but there are certain similarities with the way I had to challenge everything.)
Care home secrecy slammed: http://www.eadt.co.uk/news/care_home_secrecy_slammed_1_661567
Anger at behind-closed-doors probe:
http://www.chelmsfordweeklynews.co....doors_probe_into_Greenways_Care_Home_closure/
With apologies for hijacking your thread, Martina. Yes, I care passionately about abuse, as do many other TP members, I know. And I am still heavily involved in the campaign.
Sandy, the first place I thought of to ask for help was the Alzheimer's Society. When I approached the Alzheimer's Society, I was desperate for help. The Alzheimer's Society said they could not help. So I went elsewhere.
The No Secrets document is guidelines only - and open to interpretation and local 'decision making', by each and every local authority, and even Safeguarding Adults 'board'.
When an investigation into 'events that warrant investigation' is carried out by a local authority/SS department/Safeguarding Adults unit and so on, anyone who contributes to that investigation does so on the understanding (implied only is sufficient; it doesn't need to be written) that anything they say is 'given and held in confidence'. That confidentiality is upheld by the ICO (Information Commissioner's Office) and by the Freedom of Information Act - on the basis that it would be impossible to get people to contribute to the investigation if they thought that everything they were contributing would be available in the 'public domain'.
When I - and my family members - contributed to the investigation carried out in my own family circumstances, I never did so on the understanding that my information would be given and held in confidence. I expected and wanted everything I had to say to be heard and distributed, otherwise 'lessons would never be learned'.
But, I was naive then, never having faced such a situation before - because I never for one moment considered that the perpetrators of abuse would be able to give information, claim confidentiality, leave the country, and never be held to account. That was one of the lessons I learned from it all.
The meetings are all held 'in secret', and family even is not allowed to attend. But the perpetrators of abuse are allowed to attend. So family was never able to question the validity of the information presented to the investigators by the perpetrators - to this day, that hurts.
The resulting report is 'confidential' and even family is not allowed a copy of the full report - only an abbreviated summary. It took me nearly 6 months to gain access to that abbreviated summary - it was refused initially; I challenged that refusal; it was refused again ... and on it went, until such time as the local authority took lengthy legal advice. The L/A did everything to prevent me seeing even the summary.
But the perpetrators are all allowed to see the full report, and - believe this one, or not, but it is true: they are allowed to question the draft report, to insist on alterations and additions to the report before it is finalised. Family do not have that same right.
That is, in my view, unacceptable. But I am, of course, heavily biased.
If a Coroner calls an inquest, the Coroner has the ability to insist that anyone is required to attend and to be questioned in public. The Coroner doesn't apportion blame any more than these Safeguarding Adults investigations apportion blame. The only reason for the investigations is to work out what went wrong; where the systems went wrong; and for lessons to be learned. And only the legal system can apportion blame and hold people responsible for their actions.
Sadly, lessons are often 'NOT' learned.
Two links to a current/hot debate over the 'Behind closed doors' debate going on in Essex. (It's nothing to do with me, but there are certain similarities with the way I had to challenge everything.)
Care home secrecy slammed: http://www.eadt.co.uk/news/care_home_secrecy_slammed_1_661567
Anger at behind-closed-doors probe:
http://www.chelmsfordweeklynews.co....doors_probe_into_Greenways_Care_Home_closure/
With apologies for hijacking your thread, Martina. Yes, I care passionately about abuse, as do many other TP members, I know. And I am still heavily involved in the campaign.
Sandy, the first place I thought of to ask for help was the Alzheimer's Society. When I approached the Alzheimer's Society, I was desperate for help. The Alzheimer's Society said they could not help. So I went elsewhere.
I only suggested this pole to Martina to try and find out how many members on this forum had come into contact with abuse as a starting point and to help bring awareness.
Well thats how it started
Now i know how other members feel like now when they simply ask a question and then feel like they have to justify asking it
Well thats how it started
Now i know how other members feel like now when they simply ask a question and then feel like they have to justify asking it
Simon, please don't feel like that. If anything, you have achieved more than could have been achieved by a poll, because we have now started a strong discussion about abuse.
The thread was started by Martina, looking for help for her friend. That's why we're still reply to her original post, and to later posts on the same thread.
Your poll has become intermingled with Martina's thread. And the poll-structure is the only thing people have been questioning. Nobody has asked you to justify anything, as far as I can see.
Your poll has helped us all to see how difficult it can be to create a meaningful poll on TP. I fouled up too the other day, by thinking a poll would be a good idea to answer my question. It showed something to me, and I learnt from it. One thing I learned is that a poll is only worth creating if enough people happen to see it - and choose to vote on it - on the first day. Otherwise it gets lost amongst all the other threads. Perhaps polls can only be effective if they're very simple, and are stuck in the 'sticky' area of TP. But only Moderators can 'sticky' a thread!
Simon, I think you have started a healthy discussion.
The thread was started by Martina, looking for help for her friend. That's why we're still reply to her original post, and to later posts on the same thread.
Your poll has become intermingled with Martina's thread. And the poll-structure is the only thing people have been questioning. Nobody has asked you to justify anything, as far as I can see.
Your poll has helped us all to see how difficult it can be to create a meaningful poll on TP. I fouled up too the other day, by thinking a poll would be a good idea to answer my question. It showed something to me, and I learnt from it. One thing I learned is that a poll is only worth creating if enough people happen to see it - and choose to vote on it - on the first day. Otherwise it gets lost amongst all the other threads. Perhaps polls can only be effective if they're very simple, and are stuck in the 'sticky' area of TP. But only Moderators can 'sticky' a thread!
Simon, I think you have started a healthy discussion.
Well academics have to get permission before using TP for research and I can say this - we're unlikely to set up a system which might make it easier to do said research without getting permission.
If a researcher wants an idea about what would make a good research project all they have to do it look at the things that come up over and over again.
If a researcher wants an idea about what would make a good research project all they have to do it look at the things that come up over and over again.
Is that "we" the Moderators?
Or is that "we" the Alzheimer's Society?
Do Academics need permission to read TP too? Just a thought, prompted by previous post.
I've always taken it for read that any 'Academic' or any 'Researcher' can read until the cows come home anything posted on the www ... and then go away and use in their own research any single word/experience/thought/dream/hope posted.
I think Jancis has a valid point. If the software allows polls to be created - good or bad polls like my own! - is it the Alzheimer's Society who should decide whether there could perhaps be a 'special section' for those who wish to construct a poll, or is it the TP moderation team who have that decision in their gift?
Hey - I'm a volunteer - I don't have anything in my "gift" (except my own time).
I was just highlighting the fact that we (TP as a whole) have rules about research. And sometimes we (the moderators) have to enforce said rules even with people such as researchers who should know better.
Jancis - no, of course, research is great. Using TP members without their knowledge or permission would not be so great. I (a member) just don't think unscientific polls are the best way to highlight those areas that could benefit from research.
I was just highlighting the fact that we (TP as a whole) have rules about research. And sometimes we (the moderators) have to enforce said rules even with people such as researchers who should know better.
Jancis - no, of course, research is great. Using TP members without their knowledge or permission would not be so great. I (a member) just don't think unscientific polls are the best way to highlight those areas that could benefit from research.
Researchers and academics have always had to ask permission before posting any requests.
Obviously, no one needs permission to read posts. But researchers would most likely need more information than a casual poll can provide. Even reading through threads would only give them subjective information. This may work for some but not all.
Setting up a poll for a complex research subject is very delicate and difficult work. Things need to be researched just so. If you have ever had the misfortune to agree to a telephone survey, you know exactly how long they can go on, with what seem like the same questions over and over, but very carefully reworded. This is done for the purpose of trying to get accurate results.
As for the forum and its software, the final decision lies with the Alzheimer's Society and its staff. Suggestions from members and member-moderators would be considered but not necessarily used.
Obviously, no one needs permission to read posts. But researchers would most likely need more information than a casual poll can provide. Even reading through threads would only give them subjective information. This may work for some but not all.
Setting up a poll for a complex research subject is very delicate and difficult work. Things need to be researched just so. If you have ever had the misfortune to agree to a telephone survey, you know exactly how long they can go on, with what seem like the same questions over and over, but very carefully reworded. This is done for the purpose of trying to get accurate results.
As for the forum and its software, the final decision lies with the Alzheimer's Society and its staff. Suggestions from members and member-moderators would be considered but not necessarily used.
Who should know better? And why?
Jennifer, how on earth do you know whether any single member of TP, or any single non-member but reading of TP person is conducting research?
And what is the 'better' that they should know.
You have seriously confused me now, about the raison d'etre of TP.
We're all VOLUNTEERS on TP. Every single TP member is VOLUNTEERING their experience of dementia.
For consideration by others - absorb it, if it's appropriate for you (you = other TP member), or squash it out of your comfort zone if that is also appropriate for you (you = other TP member).
Any single word posted on TP can be used by any single researcher, academic or not! In the conducting of their own research.
I am now seriously confused.
Thanks, Canadian Joanne, I now understand that Jennifer's "we" is the Alzheimer's Society. We weren't talking about whether or not a Researcher needs permission to post a request.
Researchers research a multitude of sources. Those may be any particular thread on TP, if it fits their research aims. It doesn't mean they will include or exclude anything they read on TP into their final research.
Perhaps you need a poll of TP members as to whether their suggestions about polls should be considered and used? Otherwise, the Alzheimer's Society may need to explain what it knows best, in the best interests of TP.
Because, and forgive me if I am stating the obvious, one assumes academic researchers have the ability to read the rules and understand them.
http://forum.alzheimers.org.uk/misc.php?do=showrules
(Specifically 2.4)
You've missed the point, Jennifer, so you aren't stating the obvious. You are perhaps obfuscating! And I take it that you are replying now as a Moderator.
Any single researcher doesn't need to read the rules. All they need to do is to read TP.
Do you have a problem with Academic Researchers?
Academic research can be invisible. And sometimes invisible academic research can be more valuable!
I am now even more confused than before.
Any single researcher doesn't need to read the rules. All they need to do is to read TP.
Do you have a problem with Academic Researchers?
Academic research can be invisible. And sometimes invisible academic research can be more valuable!
I am now even more confused than before.
Thank you very much for your most helpful information JPG1 - this is precisely part of what I am looking for an no doubt will give my friend some answers too. Spot on
Martina
Thank you very much for your support Miss Cool and also for bringing the thread back to my original intention. I hope that other than "a show of hands" the poll situation can be taken into another thread. This one is for ABUSE. (I feel like writing the word ABUSE in capitals each time I use it!).
If each of us uses one voice we can have a choir...
Martina
Sandy, the Poll statement says that I cannot post a vote, as I have already posted mine.
My Poll question has three answer options: yes, no, unaware. Using my further available 7 options, I tried to "specify" "if yes," where the poll could be multiple choice. I am interested in areas affected, in the event of a "yes" answers.
Martina
Thank you Leanne and Sandy - I will read up on the Document and also check out your links Sandy. Much appreciated.
Martina
My friend's case is nowhere as drastic and tragic as yours but the PRINCIPLEs are the same, the right to be heard and a fair registration of one's complaint.
How would your relative be vindicated if not for your endeavours? I admire your resilience, perseverance and determination for your situation to be acknowledged. It is never too late to try one's best.
Shockingly interesting and most upsetting, especially in this country where one is "innocent until proven guilty" - doesn't seem to have applied..
Thank you JPG1 for sharing - though it is clearly raw and profoundly hurting I really value your input.
Martina
Move on
I would like to move on from the minutiae of Polls.
As far as I am concerned, for MY thread of ABUSE, Simonmonty's idea of a Poll was very welcome as I saw the opportunity of a "show of hands" which, I believe, served Simon, Miss Cool and myself an indication of the prevalence and nature of abuse.
If we were sitting in a discussion group and I asked the same questions, one at a time, I am sure people would nod, shake their heads, raise their hand etc and the conversation continue about ABUSE rather than the value (or not) or refinement of polls.
I have received many helpful, insightful and practical advice on her and I am most grateful for your time, effort, emotions and participation.
I will now take myself away and absorb the contents of the various links and recommendations.
Many kind thanks to you all.
Martina
I would like to move on from the minutiae of Polls.
As far as I am concerned, for MY thread of ABUSE, Simonmonty's idea of a Poll was very welcome as I saw the opportunity of a "show of hands" which, I believe, served Simon, Miss Cool and myself an indication of the prevalence and nature of abuse.
If we were sitting in a discussion group and I asked the same questions, one at a time, I am sure people would nod, shake their heads, raise their hand etc and the conversation continue about ABUSE rather than the value (or not) or refinement of polls.
I have received many helpful, insightful and practical advice on her and I am most grateful for your time, effort, emotions and participation.
I will now take myself away and absorb the contents of the various links and recommendations.
Many kind thanks to you all.
Martina
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Good luck
Hello Martina,
My mother is receiving emtoional, pschological and financial abuse from her husband, my step dad of 17 years.
Since March he has denied me access, created huge psychological abuse for Mum and me. I have involved everyone, yet no one acts in Mums best interest. The say she is fine.
I have evidence and have shown some of it, however they dont want to know, they say it is a family feud. With everyday is a day lost.
I am tramatised.
I want to turn the negative to postive. The hatred to to love. I want to stop/prevent it happening/continuing to Mum and to others.
I dont really understand how I can help, but if you think I can please let me know. I am happy to share our trauma.
Good luck
Izzie
Hello Martina,
My mother is receiving emtoional, pschological and financial abuse from her husband, my step dad of 17 years.
Since March he has denied me access, created huge psychological abuse for Mum and me. I have involved everyone, yet no one acts in Mums best interest. The say she is fine.
I have evidence and have shown some of it, however they dont want to know, they say it is a family feud. With everyday is a day lost.
I am tramatised.
I want to turn the negative to postive. The hatred to to love. I want to stop/prevent it happening/continuing to Mum and to others.
I dont really understand how I can help, but if you think I can please let me know. I am happy to share our trauma.
Good luck
Izzie
