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

[Karen Atkinson]

My husband died in 2014

We had excellent support from social services and our personal social worker and it makes me sad and cross to hear how the service has gone steadily downhill since then.

If you would like to talk further about this and take part in the research, please can you contact me by directly by messaging me through this forum (click on my name and then 'Start conversation'), or by emailing me at karen.atkinson@sunderland.ac.uk.

 

[Izzy]

Hi Izzy, can you contact me by directly by messaging me through this forum (click on my name and then 'Start conversation'), or by emailing 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’ve emailed you then decided that a conversation would be easier - so apologies for double contact!

 

[SeaSwallow]

Hello @Karen Atkinson I will start a conversation with you over the next couple of days regarding my experiences of a hospital social worker which were extremely distressing at the time.

 

[Karen Atkinson]

I’ve emailed you then decided that a conversation would be easier - so apologies for double contact!

Thanks Izzy - no worries. Let's chat on here as it looks like I can now attach files. My reply email to you said the following:

Thanks for your offer to participate in the study. I'm emailing you some information which is:


    - An information sheet telling you about the research'
- A Consent Form which assures your anonymity. You need to sign this and return it to me.
- A list of possible topics we might discuss.


When you return the Consent Form, we can take it from there via this Chat Conversation, if this is what you prefer.

Once again, thank-you so much for your time and offer. I feel that it's essential that up-and-coming students of social work have a realistic picture of carers' needs and experiences for when they enter their chosen profession as a social worker. Your involvement is really important and appreciated. We can easily work around your holiday and can chat beforehand or afterwards. A cruise on the QM2 sounds very adventurous!

Please can you let me know you can open the files.

Thanks

Karen

 

[Izzy]

Thanks for these. I’m up to my eyes a bit just now but will open up the attachments soon and get back to you.

 

[Izzy]

@Karen Atkinson - these attachments are not opening for me as word files - they're opening as text files. I've tried on my Macbook and my ipad.

 

[Izzy]

@Karen Atkinson - these attachments are not opening for me as word files - they're opening as text files. I've tried on my Macbook and my ipad.

Ah - the ones you emailed to me are in Word format.

 

[nitram]

@Karen Atkinson

these attachments are not opening for me as word files - they're opening as text files. I've tried on my Macbook and my ipad

They are *.txt
Know nothing about apple products, with windows you can select what app is associated with *.x, with MS Word you may have to select the encoding standard beforehand, e.g. Windows (Standard) or Unicode (UTF-8)

 

[Izzy]

@Karen Atkinson

They are *.txt
Know nothing about apple products, with windows you can select what app is associated with *.x, with MS Word you may have to select the encoding standard beforehand, e.g. Windows (Standard) or Unicode (UTF-8)

It's OK thanks I got them all as word in the email Karen sent me.

 

[Karen Atkinson]

It's OK thanks I got them all as word in the email Karen sent me.

Great that you've got them now Izzy

 

[Jaded'n'faded]

Further to my own, limited, experience and years of participating in this forum, I'd make the following points.

1. It's a 2-tier system - self funders are treated differently to people who would/will be council funded. This seems wrong.

2. There's a general lack of continuity and poor communication. Emails go unanswered, the promised telephone callbacks never happen.

3. When it comes to moving someone to a care home, the system becomes very adversarial. Family wish their loved one to move to a care home for their own safety or due to carer exhaustion. Social Services often refuse and would rather wait till their maximum of '4 care visits per day' at home has been tried and failed. In other words, family have to wait for a crisis, often resulting in harm to the person with dementia. (Not to mention their exhausted family.) Is it any wonder it comes across as putting budgets before the wellbeing of the person with dementia?

4. The same often applies to a DoLS assessment. My own experience of this was extremely bad. To be told I couldn't be my mother's RPR because I wanted her to stay in the care home I'd found for her (she clearly needed 24/7 care for the rest of her life) but mum - apparently - wanted to go 'home' was simply ridiculous. Perhaps someone can tell me why a DoLS SW will believe every word a person with dementia says ('I do everything for myself, I don't need any help,' etc.) and completely disregard everything they are told by a person (e.g. me) who knows that person better than anyone?

5. Perhaps you can also explain to me why a social worker has the ultimate say over mental capacity and can go against the expressed opinions of medical consultants? The opinions of medically-untrained social workers are not considered to trump medics with any other disease. (And rightly so!)

6. Social Services need to stop fighting with the NHS over who pays for care.

 

[Karen Atkinson]

Hi Jaded'n'faded, thanks for your reply. I can understand the sense of frustration felt by carers who feel the system is very unfair and that they are hitting their head against a brick wall at times. I'd love the chance to ask you more about this via email or Conversations, if you would be willing to participate. No pressure, though, as any participation is purely voluntary. If you are interested, please contact me via Conversation or email (karen.atkinson@sunderland.ac.uk)

 

[maisiecat]

Hi @Karen Atkinson I could write a thesis on my interactions with Hospital social worker and my husband's case was unusual as we were unknown to social services. He had had Parkinsons for 19 years and Parkinson dementia for 6. He then developed vascular dementia and was admitted to hospital following a fall.
I was told within 8 days in a crowded corridor that he would never come home again. This was when it kicked in about the fact that we hadn't been using carers and social services didn't "know us".
I also think that social workers should be more focused on the client's needs. As someone who has survived their brutal process their only concern is staying in budget. I don't drive (almost a crime I felt) and Homes chosen would be a journey of 2 hours each way.
Luckily for us my husband's psychosis and general disruptive behaviour was such that only a really nice local home would take him.
He is much more settled and my visits really matter to him and me because we still love each other. Dementia doesn't always take that away.

 

[Karen Atkinson]

Hi @Karen Atkinson I could write a thesis on my interactions with Hospital social worker and my husband's case was unusual as we were unknown to social services. He had had Parkinsons for 19 years and Parkinson dementia for 6. He then developed vascular dementia and was admitted to hospital following a fall.
I was told within 8 days in a crowded corridor that he would never come home again. This was when it kicked in about the fact that we hadn't been using carers and social services didn't "know us".
I also think that social workers should be more focused on the client's needs. As someone who has survived their brutal process their only concern is staying in budget. I don't drive (almost a crime I felt) and Homes chosen would be a journey of 2 hours each way.
Luckily for us my husband's psychosis and general disruptive behaviour was such that only a really nice local home would take him.
He is much more settled and my visits really matter to him and me because we still love each other. Dementia doesn't always take that away.

Hi maisiecat, thank you so much for responding and this is really valuable information. I would love to talk more about this with you via Conversation or via email if you would be willing to do so. Absolutely no pressure though as all participation in the study is wholly voluntary but if you would like to contribute further, please do so by karen.atkinson@sunderland.ac.uk or by directly messaging through this forum by clicking on my name and then 'Start conversation'.

 

[Karen Atkinson]

Hello @Karen Atkinson I will start a conversation with you over the next couple of days regarding my experiences of a hospital social worker which were extremely distressing at the time.

Thanks SeaSwallow. Much appreciated and I'll look forward to chatting to you via Conversation.

 

[yoy]

Further to my own, limited, experience and years of participating in this forum, I'd make the following points.

1. It's a 2-tier system - self funders are treated differently to people who would/will be council funded. This seems wrong.

2. There's a general lack of continuity and poor communication. Emails go unanswered, the promised telephone callbacks never happen.

3. When it comes to moving someone to a care home, the system becomes very adversarial. Family wish their loved one to move to a care home for their own safety or due to carer exhaustion. Social Services often refuse and would rather wait till their maximum of '4 care visits per day' at home has been tried and failed. In other words, family have to wait for a crisis, often resulting in harm to the person with dementia. (Not to mention their exhausted family.) Is it any wonder it comes across as putting budgets before the wellbeing of the person with dementia?

4. The same often applies to a DoLS assessment. My own experience of this was extremely bad. To be told I couldn't be my mother's RPR because I wanted her to stay in the care home I'd found for her (she clearly needed 24/7 care for the rest of her life) but mum - apparently - wanted to go 'home' was simply ridiculous. Perhaps someone can tell me why a DoLS SW will believe every word a person with dementia says ('I do everything for myself, I don't need any help,' etc.) and completely disregard everything they are told by a person (e.g. me) who knows that person better than anyone?

5. Perhaps you can also explain to me why a social worker has the ultimate say over mental capacity and can go against the expressed opinions of medical consultants? The opinions of medically-untrained social workers are not considered to trump medics with any other disease. (And rightly so!)

6. Social Services need to stop fighting with the NHS over who pays for care.

I would echo all these points, and add the following :

Having to speak to around 6 different social workers in around as many months.

SW's not even meeting the client or carer (after even the local hospital dropped the requirement for masks to be worn after covid, would SW's come out? No.) Only one ever met mum and me and discussed things at length to come up with something we all agreed on. Everyone else made decisions over the phone only.

Being told I would be listened to. Was I? No.

One SW didn't even know how to do the job. This came out because I put an official complaint in and their manager got involved and put it right. This was after 3 months of me making nearly daily phone calls or emails to discuss the issue with said social worker, as well as requesting to be transferred to another SW and being told no.

One SW wanted to put a care plan in place for dad (I had both mum & dad with different problems at the same time), which I knew would put both him and mum at risk of harm. After trying to explain at length why - I was dismissed with "well we have to try this first" - end of story. Yes, you'll be listened to alright. All from a SW who had not even met any of us. Obviously a complete stranger knows more about what mum & dad need than I do.

SW's obviously do not understand dementia and the way it affects pwd's behaviour or the impact it can have on the sufferer and the carer. Maybe they should spend at least 6 months of their training working in a dementia care home, because now we're all living longer dementia is becoming an epidemic and it needs to be properly understood.

I think that's enough, my blood pressure will be going through the roof again.

 

[nitram]

Everybody should be able to view a png

 

[TessB]

Hi TessB, this is really important information to input into the research findings so thanks for taking the time to reply. If you want to volunteer to talk a little more about this and take part 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

Hi Karen. Thank you for your reply. I have emailed you. Another poor night's sleep swung my decision to take part. I am going to phone the GP to see if they can help as I am getting hardly any sleep. It is important that social care understand how hard it is caring for someone with dementia.

 

[Karen Atkinson]

Hi Karen. Thank you for your reply. I have emailed you. Another poor night's sleep swung my decision to take part. I am going to phone the GP to see if they can help as I am getting hardly any sleep. It is important that social care understand how hard it is caring for someone with dementia.

Thanks TessB. I got your email and emailed back. Did you get my reply to you? Thanks, Karen

 

[Karen Atkinson]

Hello @Karen Atkinson I will start a conversation with you over the next couple of days regarding my experiences of a hospital social worker which were extremely distressing at the time.

Hi SeaSwallow - I'm just popping the Information and Consent Forms here until you can start a Conversation so you can read a bit more about the study in the meantime. Thanks, Karen