Research study: caring for a person with dementia and your experiences of social services

sdmhred

Registered User
Jan 26, 2022
2,423
0
Surrey
@Rishile
Your long story would be SO good for social work trainees to hear. you have such experience to share of both good and bad practice.
 

sdmhred

Registered User
Jan 26, 2022
2,423
0
Surrey
I completely agree @Rishile. All of us here want to advocate for dementia and carers rights but the nature of the beast means we don’t have the time and headspace to share our knowledge
 

Rishile

Registered User
Dec 28, 2022
412
0
A lot of the information is on this forum from January 2023 if @HarrietD would like to read through my messages. I would happily answer any questions if required.
 

Karen Atkinson

Registered User
Apr 5, 2024
32
0
Can I ask if this is a question/answer request or do you want a 'story'? I have a long story to tell but it could take a long time for me to complete as my carer duties take up a lot of my time.
Hi @Rishile, yes I'm very much interested in carers' stories. It doesn't matter how long it takes and you can choose what format you want to tell this - email, via Conversation option on this forum, or by Zoom or Teams face-to-face. I am happy with whatever you feel most comfortable with. If you would like to go forward, can you email me at karen.atkinson@sunderland.ac.uk and I will send you some more information about the study along with a Consent form to sign to agree participation. Looking forward to hearing from you. Karen
 

jen O

New member
May 6, 2024
6
0
Thanks so much for replying. It's interesting that you see the service having gone downhill but I am pleased to hear you previously had excellent support when you needed it.

Hi Izzy, can you contact me by directly by messaging me through this forum (click on my name and then 'Start conversation'), or by tbfeed themselves oerllllemailing me at karen.atkinson@sunderland.ac.uk. At the moment (I think because I am new to the forum), I can't see an option to open Conversations myself (I think I have to post 10 times to do that)
I agree service freewheeling downhill. What will you u guys so in ten fifteen years?? whenb someone with dementia who cant feed or drink themselves and who is incontinent or commicate doesn't qualify for funding or has to jump through hoops. And yet the ppl who run residential homes are allowed to run them for profit. When I say profit I mean millions m
 

Orsonkartt

Registered User
Aug 6, 2023
23
0
Hello yoy, thanks for replying. It's so important that carers voices are heard and I appreciate you taking the time to post. Participation in the research study is entirely voluntary and I can understand you not wanting to re-live the experience again. If you do change your mind, you would be very welcome to participate in the study. You can contact me by directly messaging me through this forum by clicking on my name and then 'Start conversation', or by emailing me at karen.atkinson@sunderland.ac.uk Thanks again.
I won’t be contacting you for pretty much the same reasons. That and if I had a spare hour or two I’d want it for myself. Thanks for asking and best of British
 

DonnaW

New member
Dec 12, 2023
1
0
The only experience I have so far with Social Services is chasing them up. I was told 5 weeks ago that a urgent assessment would be requested but they couldn't say when. There is a waiting list. In the meantime I am trying to do everything and am very tired
 

SAP

Registered User
Feb 18, 2017
1,538
0
I am perhaps in a different situation as I worked with social services as a carers advisor as well as being a care myself. I have had good and bad experiences both personally and professionally of working with social workers, the upside of my role and experience meant that I could cut through the ******** ( no other word for it) and tell services what I expected, what their role was and how I would deal with anything less that the correct input. And believe me I have complained for my self and my mum but mostly for other cares being sidelined by shoddy services and complete lack of professionalism by social workers. You might not want my input but it’s there is you do. I no longer have a hands on care role and I took early retirement to manage the situation with my mum so I do have some time.
 

Alisongs

Registered User
May 17, 2024
177
0
East of England
I've thought about this thread for a while. My experiences of social workers and social services left me with an incredibly low opinion of them (that's putting it politely). Having thought about it I'm not sure that I want to re-live it all again or that I could keep it civil one to one.
Same here
 

PaxmanValenta

New member
Sep 27, 2022
3
0
I was a previous member of this forum from 2015, my mother had started to show some early signs of dementia some years before and died a last year. My opinion of social services couldn't be lower, you could be forgiven sometimes for believing that their purpose is to make things difficult. I found them to be a very difficult organisation to deal with who completely lacked empathy and didn't listen.

Now you will have to excuse me for being vague here as you never know who is reading this as it is a public forum, so I'm not going into much detail. The actions of my sibling (who has a long track record for trouble and a chaotic life) and her partner resulted in me being unable to have contact with my mother for the last few years of her life unless I agreed to their ridiculous terms and conditions. According to social services, it was a family disagreement and they could not get involved. It absolutely beggars belief, there were so many red flags that something was wrong, in fact it makes me wonder just how obvious it has to be before action is taken.

What I would say to social workers is this: When I approached SS for help, I was desperate, burnt out and already been struggling for years and I'm sure that this is the case for many people. Please please listen to people and while you have your procedures to follow, just remember that you are dealing with people's lives, we are not just a procedure, a set of tick boxes and menus on a computer screen. I really didn't feel like they were interested.

There also seems to be a problem with the way that capacity is assessed. I don't know enough about the mental health act to know if this is an issue with the act itself or they way it is interpreted and applied, but assessing someone as having capacity to make decisions that they don't understand is not protecting them or in their best interests.

Hindsight is a wonderful thing and I would do many things differently and wouldn't put up with what I did at the time, but at the time I was exhausted after years if caring.