Mum's care needs

michael079

Hello, I would really appreciate some advice if possible. I can't seem to get answers anywhere. My mum was in a nursing home previously but they said they couldn't look after her because she needs constant supervision and had injuries all the time, and that it would cost double. The social worker at the time said the extra funds would be available for extra supervision but I brought her home to take a step back, and we trialled live in care and it worked perfectly, but is expensive (although the same as extra supervision in a nursing home). Parkinson's doctor reviewed her recently and agrees a nursing home is dangerous for her, and that its safer at home. We waited a year for social work assessment and they were due to put it to a funding panel 4 weeks ago to fund live-in care. I stepped in to provide care as emergency measure but now they are delaying the funding panel, week after week another excuse for the delay. Both the social worker and senior social worker are now delivering out of office replies when I email them. I feel they are now using me to avoid funding it, but I can't continue. I'm a recovering alcoholic (18 years sober) but have cared for her for too many years now and need to focus on my own life before it's too late. I do have POA, but I fear what they will do if I say I cant continue. Placing her back in a nursing home would feel like signing her death warrant. She is unpredictable, strong willed with so much energy and has horrendous balance issues, but no awareness of it. I can't understand why they are allowed to leave me in the dark and not follow through with the funding panel, so at least we know where we'll stand. What can I do? local msp has been heavily involved too but still no luck. We're in Scotland. Any advice would be much appreciated. 

ampersand

For ease of reading -

"Hello, I would really appreciate some advice if possible. I can't seem to get answers anywhere.

My mum was in a nursing home previously but they said they couldn't look after her because she needs constant supervision and had injuries all the time, and that it would cost double.

The social worker at the time said the extra funds would be available for extra supervision but I brought her home to take a step back, and we trialled live in care and it worked perfectly, but is expensive (although the same as extra supervision in a nursing home).

Parkinson's doctor reviewed her recently and agrees a nursing home is dangerous for her, and that its safer at home.

We waited a year for social work assessment and they were due to put it to a funding panel 4 weeks ago to fund live-in care. I stepped in to provide care as emergency measure but now they are delaying the funding panel, week after week another excuse for the delay.

Both the social worker and senior social worker are now delivering out of office replies when I email them. I feel they are now using me to avoid funding it, but I can't continue.

I'm a recovering alcoholic (18 years sober) but have cared for her for too many years now and need to focus on my own life before it's too late.

I do have POA, but I fear what they will do if I say I cant continue.

Placing her back in a nursing home would feel like signing her death warrant. She is unpredictable, strong willed with so much energy and has horrendous balance issues, but no awareness of it. 

I can't understand why they are allowed to leave me in the dark and not follow through with the funding panel, so at least we know where we'll stand.

What can I do?

Local msp has been heavily involved too but still no luck. We're in Scotland.

Any advice would be much appreciated "
#
The Daily Record?
Broadsheet publicity? 
Local authorities tend to pull their fingers out after attention....

I wish you both well and strength to you.

michael079

ampersand said:

For ease of reading -

"Hello, I would really appreciate some advice if possible. I can't seem to get answers anywhere.

My mum was in a nursing home previously but they said they couldn't look after her because she needs constant supervision and had injuries all the time, and that it would cost double.

The social worker at the time said the extra funds would be available for extra supervision but I brought her home to take a step back, and we trialled live in care and it worked perfectly, but is expensive (although the same as extra supervision in a nursing home).

Parkinson's doctor reviewed her recently and agrees a nursing home is dangerous for her, and that its safer at home.

We waited a year for social work assessment and they were due to put it to a funding panel 4 weeks ago to fund live-in care. I stepped in to provide care as emergency measure but now they are delaying the funding panel, week after week another excuse for the delay.

Both the social worker and senior social worker are now delivering out of office replies when I email them. I feel they are now using me to avoid funding it, but I can't continue.

I'm a recovering alcoholic (18 years sober) but have cared for her for too many years now and need to focus on my own life before it's too late.

I do have POA, but I fear what they will do if I say I cant continue.

Placing her back in a nursing home would feel like signing her death warrant. She is unpredictable, strong willed with so much energy and has horrendous balance issues, but no awareness of it. 

I can't understand why they are allowed to leave me in the dark and not follow through with the funding panel, so at least we know where we'll stand.

What can I do?

Local msp has been heavily involved too but still no luck. We're in Scotland.

Any advice would be much appreciated "
#
The Daily Record?
Broadsheet publicity? 
Local authorities tend to pull their fingers out after attention....

I wish you both well and strength to you.

Thanks, I had thought about that. But i can't see any papers being interested. I mean it's common knowledge isn't it that these problems with finding care exist?

And thanks for your kind words. 

elsien

Most people here are not going to be familiar with the Scottish system. However as with any system if you’re not getting anywhere then formal complaint is the route to take. 

Have you done that at all?

The other thought is to phone up duty to see why you’re not getting a response. In my local authority social workers are going off sick or leaving left, right and centre, so when they don’t reply, it tends to be because they’re not actually in work. 

It also leaves an evidence trail because duty have to log the calls, and if they’re not in, you can ask who has taken over their caseload and/or who their manager is to escalate the issue. 

michael079

elsien said:

Most people here are not going to be familiar with the Scottish system. However as with any system if you’re not getting anywhere then formal complaint is the route to take. 

Have you done that at all?

The other thought is to phone up duty to see why you’re not getting a response. In my local authority social workers are going off sick or leaving left, right and centre, so when they don’t reply, it tends to be because they’re not actually in work. 

It also leaves an evidence trail because duty have to log the calls, and if they’re not in, you can ask who has taken over their caseload and/or who their manager is to escalate the issue. 

Too scared to make any complaints. Had a terrible experience 2 years ago, an NHS complaint was upheld but the same issue persisted. It caused great distress and when I shared it with the social worker, I received what I perceived  to be a threat, not to make any more complaints as they have the power to put her in care. 

I will try to keep escalating though, but my experience over the past year, and more recently is, doesnt matter who you talk to, they just say there is no answers and we have to wait endlessly. Our msp will also keep trying but at the moment it feels there is no real working system right now

Richard1212

Your awful dilemma shows how poor our social care "service" is throughout the UK, Michael. We could all spend hours on this forum talking about starting again from scratch with an NHS, Dental services, social care, etc that dates back to 1940s instead of being built on 21st ideas, needs and realism. 

Your situation, as far as I know, is a common one but to you it is unique and it must be heartbreaking. My wife and I send you every best wish and satisfactory outcome sooner rather than later. Yes, you are kind and caring but, yes, YOU need a life too. It must be so difficult.

I am surprised that your MSP has not been of more help. In England , if you write to your MP , he/she is duty bound to pass your letter on to the Secretary of State concerned who is duty bound to give your MP a personal reply ( though it is drafted by a civil servant , it means that far more thought and constructive comment is given instead of the old  couldn't-care-less bureaucracy ). Stay with your MSP and ask him/her to write directly to Scotland's Government Health Minister.

I fear that you may not get any life-changing advice on this or any forum----simply because the social care system is broken everywhere. All I can do is to advise pressing your MSP, especially with an Election in sight ; and keep pressing the social workers' managers every week without fear. Very Best Wishes from someone whose mother suffered from dementia for a long time in old age.

michael079

Richard1212 said:

Your awful dilemma shows how poor our social care "service" is throughout the UK, Michael. We could all spend hours on this forum talking about starting again from scratch with an NHS, Dental services, social care, etc that dates back to 1940s instead of being built on 21st ideas, needs and realism. 

Your situation, as far as I know, is a common one but to you it is unique and it must be heartbreaking. My wife and I send you every best wish and satisfactory outcome sooner rather than later. Yes, you are kind and caring but, yes, YOU need a life too. It must be so difficult.

I am surprised that your MSP has not been of more help. In England , if you write to your MP , he/she is duty bound to pass your letter on to the Secretary of State concerned who is duty bound to give your MP a personal reply ( though it is drafted by a civil servant , it means that far more thought and constructive comment is given instead of the old  couldn't-care-less bureaucracy ). Stay with your MSP and ask him/her to write directly to Scotland's Government Health Minister.

I fear that you may not get any life-changing advice on this or any forum----simply because the social care system is broken everywhere. All I can do is to advise pressing your MSP, especially with an Election in sight ; and keep pressing the social workers' managers every week without fear. Very Best Wishes from someone whose mother suffered from dementia for a long time in old age.

Thankyou Richard, for your kind words 🙏 I really appreciate it. I will take heed of your advice. I wish you all the best too

beanielou

I would also include your MP as well as MSP.