DH consultation on abuse - your views needed

[Louise Lakey]

Dear all,

I posted the thread below a few days ago. I just wanted to reiterate that I would welcome the views of everybody, whether or not you have a personal experience of possible abuse or neglect. Comments I would welcome include what abuse people with dementia might be particularly at risk of and how individuals can be protected. This is something that everyone can have an opinion on. Please see my original email and the list of questions below....

Some guidance for England called ‘No secrets’ is being reviewed by the Department of Health. This was originally published in 2000.

The guidance is about how to safeguard adults from abuse and neglect. Abuse and neglect can be in many different forms, for example neglect through poor quality care, physical abuse, emotional abuse, sexual abuse and financial abuse. It is aimed at professionals such as local authorities, health services and the police.

‘No secrets’ is being reviewed because it doesn’t work as well as it should. For example, there is an emphasis on actions after abuse has taken place rather than prevention. Experience has shown that some areas of England are better at safeguarding people from abuse than others. This is not acceptable.

The Society will be responding to the consultation and we would like to hear your views and experiences to inform our response by Friday 9th January.

We realise this may be a difficult subject for many people to talk about. Any opinions and experiences that you give will be treated in confidence and permission will be sought if we would like to highlight your views anonymously in our response.

If this raises issues that you would like to discuss with someone to receive help and advice, do contact me confidentially and I will pass your details to the helpline.

We would like to know:

1. We know that people with dementia are at risk of abuse and neglect:
o What form do you think that this abuse could take?
o What are people with dementia particularly at risk of?

2. Have you had any experiences of possible abuse that you would be able to share? If yes, can you also say:
o What led you to believe that an incident had taken place?
o Did you report it to anybody? If yes, how was it handled?
o What was the outcome?

3. What more do you think could be done to prevent the abuse of people with dementia in a
o Care home
o Hospital
o Person’s own home?

4. If you did ever have to report an incident of suspected abuse:
o How would you personally want to be treated?
o What actions would you want to be taken?

5. Is there anything else you would like to comment on?

The consultation document also asks some specific questions. Do answer any of these as well if you would like to in your response to me. The full consultation document and an easy read version can be found at www.dh.gov.uk/en/consultations/liveconsultations/DH_089098

If you would like to respond, please send any comments to Louise Lakey, senior policy officer. You can respond to this thread, send a private email on Talking Point, or email Louise directly at louise.lakey@alzheimers.org.uk

Many thanks for your help,
Louise

Louise Lakey
Senior policy officer

 

[Grannie G]

Hello Louise

When you first asked for help I was one who intended to respond but have failed to do so, and i imagine I am not alone.

Your survey needs careful thinking and time to collect thoughts together.
I do have experience of possible abuse in my mother`s first home but really need to reflect in order to paint an accurate picture.

I will really try to get something together as it sounds as if you have had a poor response, but what you ask is quite a tall order.

 

[TinaT]

I could not work my way through the questions but instead I relayed what I had experienced. Hopefully this will be taken on board even though I could not answer the questions.

xxTinaT

 

[Louise Lakey]

Hello Tina and Sylvia,

Thank you so much for your comments and for taking the time to read my thread.

I fully take on board the point that there are many questions and most people won't be able to answer all these. Answers to one or two of the questions of relevance to you, or indeed comments that don't relate to the questions, are very welcome and fully appreciated. Apologies for this. I know how busy people are and I should have put in a sentence saying that any comments - however long or short - are fully appreciated. I will take on board all comments that I receive.

People have until Jan to respond and so please don't rush with a response. In my second thread I just wanted to reiterate that I was hoping to hear from anyone who has a view.

With best wishes, Louise

 

[Tender Face]

Hi Louise, you may have picked up my email response before you read this (bit too lengthy for a PM ) .....

Can I ask, for other people's benefit too, will we get to see a copy of AS's input to the consultation?

I will watch out for a link here ....

Keep up the great work, Karen, x

 

[JPG1]

That would have been my own question too.

Will we be able to see anything that will allow us to see the Alz Soc input, based on anything we all may have submitted. Or even regardless of anything which we all may have contributed.

So many of us submit our experiences, our hopes, our wishes, our demands our ... and so on. To each and every website that we see as being in a position to influence, as the Alz Soc must surely by now be.

But so very often, we are all left wondering ... whether/why/how our own personal input may have been received and included. Or even ignored totally, often because it was not deemed 'acceptable'.

It is important for all of us to see the results of our own personal efforts. Especially when those 'efforts' have been invited and requested and received.

Thanks to Tender Face for reminding me of questions I had forgotten to ask!!!

~ ~ ~ ~

 

[said]

Hi Karen/JPG1

• You can find Alzheimer's Society consultation responses here.

All the best

Said

 

[TinaT]

Hi Said,

Please don't take this as criticism as it is not meant to be. I have been (and still am) on our local LINKS, a Governor of a very large Mental Health Service, A member of Patient's Council, a member of a steering group looking at ways in which to get professionals in hospital to recognise and respond to Carer's needs,....my list of - 'membership of'.......- could go on and on. I have spent much time and effort juggling looking after my mother, my husband and attending all these committees.

All of the above the Government put into place to give local people an influence.
After some 18 months of this work, I do not feel that myself, or others who I meet in the course of this work, feel any satisfaction that we are helping to influence in any way. There is a 'Corporate Strategy' which runs to the very core of all Health Services, which is quite incompatible with allowing local democracy or influence in any respect. At most, I feel I have been paid 'lip service' or am only there to 'rubber stamp' whatever Corporate Strategy my Health Service feel will gain money from the Government or Goverment is trying to impose from above by carrot and stick methods.

Corporate Strategy is very good at 'ticking boxes' to show they have complied with this, that or the other, but NOTHING REALLY CHANGES!!!!! It just appears to do so on the surface. The poor treatment of both carers and patients with what is misnamed by calling it elderly mental health problems when younger and younger sufferers are appearing, especially on assessment wards, is 40 years behind the times. I see no response from the Government to the problem of Continuing Care needs, nor do I expect I ever will. It is all just left to continue like a broken down tractor chugging away over the same ground.

Your response in giving websites to Government documents is, I feel typical of the 'Corporate Strategy' I encounter and which is so disheartening. I see these Government Documents time and time again, but I never see them put into practical reality where patients and carers actually benefit.

Your response has, once again, made me feel that we are all 'whistling in the wind'. If carers could just be allowed to tell their own individual story and could see that others who are following in their footsteps would not suffer so much, it would be all worthwhile fighting for. Sadly I haven't found this to be the case.

xxTinaT

 

[jenniferpa]

Tina I have no doubt that you're absolutely right about the rubber stamping attitude that you have encountered : so many of the "decision makers" are not (and in many cases never have been) anything other than bean counters.

However, I feel I should point out that the specific question was "where will we find out what use our responses have been put to" and this is simply what Said has answered. It's true that there is nothing there about this thread's subject, but that's where it will be when it has been submitted.

As to whether individual stories will effect change - I remain somewhat cynical about that unless the story in question is one that has impacted a specific government minister. We all want to feel that our experience has not been in vain, and in a sense that's what Talking Point does. It allows us to share our stories so that others in the same position don't feel that they are the only ones.

This is just a personal opinion: I know there are many others,

Best wishes.

 

[TinaT]

I was probably 'sounding off' more about my own experiences than about the response from Said and for that I do apologise to her. She has answered the questions but as ever, I wonder if the AZ documents will result in decisive Government action. We try over and over again, but nothing really changes, that is the real point of my post.

I know - we are in a 'credit crunch' and I personally expect things to get worse for us all regarding Social Funding, services offered etc. 2009 will be far from easy for us Carers, I am sure of that.

xxTinaT

 

[jenniferpa]

You won't get any argument from me about that Tina. Somehow the "have nots" always come out worse when there's money problems.

 

[Louise Lakey]

Dear all,

Many thanks for your posts. Apologies for only just replying to these - I have been out of the office over the holiday period.

I am very sorry if people feel that they have responded to requests for information and then not been able to see the results of this consultation. This must be very frustrating.

In terms of the 'No Secrets' guidance, the Society's formal response to this consultation is due on the 31st January. After this date it will go up on the Society's website and can be found using the link which Said gave in his post.

I hugely value the input that I receive from people with dementia and carers. It is not just about having personal experiences to highlight (although we do sometimes highlight particular stories with the permission of the people involved). The information I receive is used to inform the response as a whole - it makes sure that I have a clear and up-to-date understanding of the issues people face, and to ask people what results and changes they would like to see. It is really important that I draw on people's expertise.

In addition to responding to the formal consultation document, we also do other work to ensure that changes are made in reality. For example, for the 'No secrets' consultation I have attended meetings to influence decision-makers and have regular communications with other organisations such as Action on Elder Abuse who are campaigning for change.

I will let Talking Point know when our response goes on the website and I will also let people know about any actions the government takes following this consultation. Also, do please contact me at any time if you have any queries or questions.

Best wishes,
Louise