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The fightback begins here!

Cazzita

Registered User
May 12, 2018
547
I'm writing to all of em! My mum's MP, my MP, Boris Johnson, and some other ministers like Matt Hancock. I sign petitions and send stock emails to MPs but I never get a response to them, so I think a personal letter is important to do too. I guess it's hard to get everyone mobilised on these things, especially when people have caring to do which is often more immediately important.
MPs details are on https://www.theyworkforyou.com
Thanks for this link! Let's keep writing and demanding change!
 

Palerider

Registered User
Aug 9, 2015
1,621
North West
Reply from our MP's PA today, after raising the House of Lords report and explainging a few things:

Dear XX,

Thank you for your email back to Esther and the explanation of where you are now up to.
Esther has raised your experiences directly with the Department of Health and Social Care, you so eloquently articulate the challenges you face both because your Mum needs care and because you are providing it.
Once we get a response, Esther will come back to you herself with that.

In the meantime, please let me know if there is anything, other than lobby Government, that we can do to help.

Thank you
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
Reply from our MP's PA today, after raising the House of Lords report and explainging a few things:

Dear XX,

Thank you for your email back to Esther and the explanation of where you are now up to.
Esther has raised your experiences directly with the Department of Health and Social Care, you so eloquently articulate the challenges you face both because your Mum needs care and because you are providing it.
Once we get a response, Esther will come back to you herself with that.

In the meantime, please let me know if there is anything, other than lobby Government, that we can do to help.

Thank you
It will be interesting to see what the reply is
 

Soroptimist

Registered User
Jun 10, 2018
59
Reply from our MP's PA today, after raising the House of Lords report and explainging a few things:

Dear XX,

Thank you for your email back to Esther and the explanation of where you are now up to.
Esther has raised your experiences directly with the Department of Health and Social Care, you so eloquently articulate the challenges you face both because your Mum needs care and because you are providing it.
Once we get a response, Esther will come back to you herself with that.

In the meantime, please let me know if there is anything, other than lobby Government, that we can do to help.

Thank you
Great news, good work!!
I'm still battling with my mum's MP as she is refusing to respond as I am not her constituent, even though I am acting on behalf of my mum and the POA has been registered with the Office of the Public Guardian. I think this should be classed as discrimination, as effectively my mum does not have a voice.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
Great news, good work!!
I'm still battling with my mum's MP as she is refusing to respond as I am not her constituent, even though I am acting on behalf of my mum and the POA has been registered with the Office of the Public Guardian. I think this should be classed as discrimination, as effectively my mum does not have a voice.
I agree !
 

witts1973

Registered User
Jun 20, 2018
731
Leamington Spa
Great news, good work!!
I'm still battling with my mum's MP as she is refusing to respond as I am not her constituent, even though I am acting on behalf of my mum and the POA has been registered with the Office of the Public Guardian. I think this should be classed as discrimination, as effectively my mum does not have a voice.
I think you're right the person that has dementia can't complain,they can have their home sold from under their nose,it's as if they don't exist
 

budda

Registered User
May 18, 2012
2
Since my mum went into residential care in April we have had lots to deal with, both emotionally with my mum's decline and practically with having to deal with things like POAs and selling my mum's house. BUT I now have time to do my bit to try to change things. I am still so angry at the situation for dementia sufferers and their families - and one thing I can do is tell my story.

Here is (an anonymised version of) the letter I have sent to the powers that be. It's made me feel better to get my voice out there. Perhaps others would like to add their letters to this thread?

I am writing to tell you about my mum, who has been living in your constituency since 2005.

My mum was a Maths teacher for around 40 years, only taking time out for the first few years after my sister and I were born. She was a very enthusiastic and competent teacher and she also used up much of her spare time to support her students with Duke of Edinburgh expeditions. When she retired she was thanked for this work by the County Council.

Since retiring she kept very busy including volunteering for Oxfam, growing vegetables, bell ringing, taking A level English and French (and getting A's for these), playing the 'cello and violin. She is a very sociable person and was always helping others out, including helping neighbours' children with Maths tuition.

She has never been in hospital except to give birth to my sister and me.

Unfortunately she had been developing dementia for several years, and since April has been living in a specialist care home for people with dementia.

My experiences dealing with doctors, Social Services and charities have highlighted to me that the way which dementia is approached is completely inadequate and has to change. There are barriers at every turn, from getting a diagnosis to getting help from Social Services to getting help from charities. On top of this, my mum has to pay for all of her care as she has more than £23,500. This would not be the case if dementia was treated as the medical condition that it is, rather than seen as a social care issue. If my mum had developed something medically treatable like cancer she would not have to pay for her care.

We had enormous problems getting a dementia diagnosis from the local GP surgery as they would not do home visits unless the patient was immobile, but, due to the dementia, my mum would refuse to go to the surgery. The GP surgery would not confirm if they had already diagnosed dementia due to “data protection”. This meant we could not access services designed for dementia sufferers. Effectively the GP was blocking us being able to get support for my mum – completely the opposite to acting in my mum's best interests. We eventually found out by calling the local Memory Clinic who checked their files and told me that my mum had been diagnosed with dementia at least a year previously!

The services promoted by charities are often volunteer led and dependent on local capacity. Once we did get confirmation of my Mum's diagnosis we were put on the waiting list for a service where volunteers spend time with dementia sufferers, but after six months we still had not been assigned a volunteer. It feels wrong to criticise a service when it is run by volunteers, however I believe that it is wrong to promote a service that is in practice not accessible. It gives the impression that there is more support available than is the case.

The local Social Services are completely stretched, we had to wait months to get an assessment of my mum. They couldn't help in any case, as they were not able to personalise their approach to respond to my mum's needs. They gave us a list of local care providers and left us to it.

I hope you agree with me that this situation needs to change. Boris Johnson said last month that “My job is to protect you or your parents or grandparents from the fear of having to sell your home to pay for the cost of care”. We are in the process now of selling my mum's house as we need it to fund her care home fees which are over £5,000 per month.

My mum is lucky in that she has family who have been acting on her behalf. What about all the vulnerable elderly people in your constituency who do not have family who are able to do this? I worry for them, as the rates of dementia are increasing and will do so further with the ageing population.

Please let me know what you plan to do in this area, and how you will help Boris Johnson to make good his promise to fix social care for the people with dementia who live in your constituency.

My father has lived with dementia for 10 years and is now, age 90, in the later stages.of the disease . In this time I have cared for him and nearly made myself ill whilst looking after family and trying to keep a business going . I had to find a ‘care’ home for him 6 years ago as I could no longer cope. We have had so many issues with the homes . He is now in his 3rd and hopefully final place. In his last ‘Care’ Home he was assaulted by another resident twice, quite violently, and abused by staff . For the last 9 months I have been my father’s voice trying to get some justice for his poor care. He was once a fit and highly intelligent man and doesn’t deserve to be treated like this. We have complained to the home, the CQC , his social worker , the ombudsman’ with little result or recompense for my fathers welfare. The head of the social care/ safeguarding team told me my Dad wouldn’t remember the abuse so not to get upset ........ All this costs money and it is on top of the thousands of pounds a month that my dad has to pay as he is self funding . If he had any other type of illness we would get help with his funding and it would be possible to find support for his poor care. I have spent years trying to get care and help for Dad only to run round in circles . I truly hope the recent publicity brings about a change and others don’t have to suffer as my father and our family have .
He is now in a nursing home where the staff are wonderful and the care is excellent. The fees are now over £5000 a month. I left him today, so frail, hardly able to see, and shouting away in his terribly tortured world. Hopefully with more people speaking out and describing life with dementia and all the issues that arise it will no longer be brushed under the carpet. It must be the most devastating disease that impacts both the person and family and I hope in the near future it gets the support, funding and understanding it deserves.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
My father has lived with dementia for 10 years and is now, age 90, in the later stages.of the disease . In this time I have cared for him and nearly made myself ill whilst looking after family and trying to keep a business going . I had to find a ‘care’ home for him 6 years ago as I could no longer cope. We have had so many issues with the homes . He is now in his 3rd and hopefully final place. In his last ‘Care’ Home he was assaulted by another resident twice, quite violently, and abused by staff . For the last 9 months I have been my father’s voice trying to get some justice for his poor care. He was once a fit and highly intelligent man and doesn’t deserve to be treated like this. We have complained to the home, the CQC , his social worker , the ombudsman’ with little result or recompense for my fathers welfare. The head of the social care/ safeguarding team told me my Dad wouldn’t remember the abuse so not to get upset ........ All this costs money and it is on top of the thousands of pounds a month that my dad has to pay as he is self funding . If he had any other type of illness we would get help with his funding and it would be possible to find support for his poor care. I have spent years trying to get care and help for Dad only to run round in circles . I truly hope the recent publicity brings about a change and others don’t have to suffer as my father and our family have .
He is now in a nursing home where the staff are wonderful and the care is excellent. The fees are now over £5000 a month. I left him today, so frail, hardly able to see, and shouting away in his terribly tortured world. Hopefully with more people speaking out and describing life with dementia and all the issues that arise it will no longer be brushed under the carpet. It must be the most devastating disease that impacts both the person and family and I hope in the near future it gets the support, funding and understanding it deserves.
((((((Hugs)))))))
Doesn’t get easier emotionally does it.
 

Soroptimist

Registered User
Jun 10, 2018
59
My father has lived with dementia for 10 years and is now, age 90, in the later stages.of the disease . In this time I have cared for him and nearly made myself ill whilst looking after family and trying to keep a business going . I had to find a ‘care’ home for him 6 years ago as I could no longer cope. We have had so many issues with the homes . He is now in his 3rd and hopefully final place. In his last ‘Care’ Home he was assaulted by another resident twice, quite violently, and abused by staff . For the last 9 months I have been my father’s voice trying to get some justice for his poor care. He was once a fit and highly intelligent man and doesn’t deserve to be treated like this. We have complained to the home, the CQC , his social worker , the ombudsman’ with little result or recompense for my fathers welfare. The head of the social care/ safeguarding team told me my Dad wouldn’t remember the abuse so not to get upset ........ All this costs money and it is on top of the thousands of pounds a month that my dad has to pay as he is self funding . If he had any other type of illness we would get help with his funding and it would be possible to find support for his poor care. I have spent years trying to get care and help for Dad only to run round in circles . I truly hope the recent publicity brings about a change and others don’t have to suffer as my father and our family have .
He is now in a nursing home where the staff are wonderful and the care is excellent. The fees are now over £5000 a month. I left him today, so frail, hardly able to see, and shouting away in his terribly tortured world. Hopefully with more people speaking out and describing life with dementia and all the issues that arise it will no longer be brushed under the carpet. It must be the most devastating disease that impacts both the person and family and I hope in the near future it gets the support, funding and understanding it deserves.
"The head of the social care/ safeguarding team told me my Dad wouldn’t remember the abuse so not to get upset ..." That is really shocking - if the head of the team thinks like this then it will trickle down to the rest of the team. You sound like you have had lots of fights on your hands with powers that be - I'm glad you have finally found a place for your dad where there is a supportive environment. I am so angry at the way dementia is treated.
 

Palerider

Registered User
Aug 9, 2015
1,621
North West
My father has lived with dementia for 10 years and is now, age 90, in the later stages.of the disease . In this time I have cared for him and nearly made myself ill whilst looking after family and trying to keep a business going . I had to find a ‘care’ home for him 6 years ago as I could no longer cope. We have had so many issues with the homes . He is now in his 3rd and hopefully final place. In his last ‘Care’ Home he was assaulted by another resident twice, quite violently, and abused by staff . For the last 9 months I have been my father’s voice trying to get some justice for his poor care. He was once a fit and highly intelligent man and doesn’t deserve to be treated like this. We have complained to the home, the CQC , his social worker , the ombudsman’ with little result or recompense for my fathers welfare. The head of the social care/ safeguarding team told me my Dad wouldn’t remember the abuse so not to get upset ........ All this costs money and it is on top of the thousands of pounds a month that my dad has to pay as he is self funding . If he had any other type of illness we would get help with his funding and it would be possible to find support for his poor care. I have spent years trying to get care and help for Dad only to run round in circles . I truly hope the recent publicity brings about a change and others don’t have to suffer as my father and our family have .
He is now in a nursing home where the staff are wonderful and the care is excellent. The fees are now over £5000 a month. I left him today, so frail, hardly able to see, and shouting away in his terribly tortured world. Hopefully with more people speaking out and describing life with dementia and all the issues that arise it will no longer be brushed under the carpet. It must be the most devastating disease that impacts both the person and family and I hope in the near future it gets the support, funding and understanding it deserves.
Thank you for sharing this experience, I hope your dad has a better experience from now on. This scenario of complaints and warnings being ignored reminds me of the events at Mid Staffordshire. Does the care system ever really learn lessons?
 

myss

Registered User
Jan 14, 2018
438
My father has lived with dementia for 10 years and is now, age 90, in the later stages.of the disease . In this time I have cared for him and nearly made myself ill whilst looking after family and trying to keep a business going . I had to find a ‘care’ home for him 6 years ago as I could no longer cope. We have had so many issues with the homes . He is now in his 3rd and hopefully final place. In his last ‘Care’ Home he was assaulted by another resident twice, quite violently, and abused by staff . For the last 9 months I have been my father’s voice trying to get some justice for his poor care. He was once a fit and highly intelligent man and doesn’t deserve to be treated like this. We have complained to the home, the CQC , his social worker , the ombudsman’ with little result or recompense for my fathers welfare. The head of the social care/ safeguarding team told me my Dad wouldn’t remember the abuse so not to get upset ........ All this costs money and it is on top of the thousands of pounds a month that my dad has to pay as he is self funding . If he had any other type of illness we would get help with his funding and it would be possible to find support for his poor care. I have spent years trying to get care and help for Dad only to run round in circles . I truly hope the recent publicity brings about a change and others don’t have to suffer as my father and our family have .
He is now in a nursing home where the staff are wonderful and the care is excellent. The fees are now over £5000 a month. I left him today, so frail, hardly able to see, and shouting away in his terribly tortured world. Hopefully with more people speaking out and describing life with dementia and all the issues that arise it will no longer be brushed under the carpet. It must be the most devastating disease that impacts both the person and family and I hope in the near future it gets the support, funding and understanding it deserves.
I cannot offer any solutions/tips but wanted to wish you the best {{{Budda}}}
 

SoAlone

Registered User
May 19, 2016
142
Devon
A great letter and glad you have received a positive response. My OH is now in a Nursing Home, but I experienced all the same problems with GP's and Social Services plus local hospital to get to this point. My OH would not eat or drink. GP's don't want to visit because they see it as a mental health issue. One from local surgery even walked out because my husband was agitated, I was furious and let him know on the doorstep exactly what I thought. Mental health services said it was GP's province, not eating and drinking. Oh and Social Services didn't want to know in case it cost them anything. Befriending/Visiting wouldn't help because of the agitation, they rightly, didn't want to put volunteers at risk. Many times the only route was to call paramedics. This eventually resulting in a very weak and frail OH being sectioned and because, and only because, I said 'I cant do this anymore' he was found a place in an NHS Assessment Centre, where wonderful staff managed just, to save his life. That wasn't the end as then the fight begins through Best Interest Meetings, because we didn't have POA to find the right placement and care.
 

Palerider

Registered User
Aug 9, 2015
1,621
North West
I have just recieved a letter from the local MP and her lobby of the government on social care and a response from Caroline Dinenage, Minister of State for Care. I will post the details when I have time later
 

Palerider

Registered User
Aug 9, 2015
1,621
North West
Well @DesperateofDevon here is a quick summary of the content. Sounds like plans are being drawn up, but what is in those plans remains to be seen. I am hoping the government take onboard the House of Lords report, anyway heres a quick summary of the response I recieved today.....

Esther McVey replied saying that the Prime Minister will be announcing plans to tackle the issue in the near future and then to respond with my thoughts on those plans. So she didn't really say very much at all.

The Minister of State for Care, Caroline Dinenage, wrote two sides in response, acknowledging the role I do and that such carer roles deserve to be better recognised, but no indication of what she meant by that. Most of the letter was rhetoric that many of us already know about current funding and the selling of family homes to pay for care, so she didn't answer my original raising of the report by the House of Lords on the scandal of social care. The Minister did finish by saying and I qoute:

Dementia is a major health and care challenge of our time, and we are working to improve care and support to make this the best country in the world to live with the condition.
She then went on to say that local authorities have been given £4billion this year as dedicated funding for social care, with a further £410million available for adults and childrens services. But importantly she has given her assurance that the Prime Minister is committed to fixing the problem and proposals will follow in due course.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
Well @DesperateofDevon here is a quick summary of the content. Sounds like plans are being drawn up, but what is in those plans remains to be seen. I am hoping the government take onboard the House of Lords report, anyway heres a quick summary of the response I recieved today.....

Esther McVey replied saying that the Prime Minister will be announcing plans to tackle the issue in the near future and then to respond with my thoughts on those plans. So she didn't really say very much at all.

The Minister of State for Care, Caroline Dinenage, wrote two sides in response, acknowledging the role I do and that such carer roles deserve to be better recognised, but no indication of what she meant by that. Most of the letter was rhetoric that many of us already know about current funding and the selling of family homes to pay for care, so she didn't answer my original raising of the report by the House of Lords on the scandal of social care. The Minister did finish by saying and I qoute:

Dementia is a major health and care challenge of our time, and we are working to improve care and support to make this the best country in the world to live with the condition.
She then went on to say that local authorities have been given £4billion this year as dedicated funding for social care, with a further £410million available for adults and childrens services. But importantly she has given her assurance that the Prime Minister is committed to fixing the problem and proposals will follow in due course.
Really need these people to walk in carers shoes for 24hours they couldn’t cope for longer!! But can’t see that happening!
The reality of the situation cannot be fully appreciated until experienced. Maybe we should all ask our MPs to stay with us for 24hours to experience the realities faced!
 

Soroptimist

Registered User
Jun 10, 2018
59
Just to update - I got a considered response from both my MP and my Mum's MP (AL) about my letter. I had to get my mum to write a letter to AL as AL wouldn't write back to me personally (as I'm not AL's constituent - even though the issues were local to her). I think I managed to embarrass her into responding as I posted my mum's letter on Twitter and Facebook. She offered a meeting but backed out of that as it was scheduled after my mum's house was sold and so she was no longer a constituent.

But at least I got both of them to engage with this.

Andrew Dilnot on Today this morning said that those affected with dementia need to be louder. How can we do this?
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
Just to update - I got a considered response from both my MP and my Mum's MP (AL) about my letter. I had to get my mum to write a letter to AL as AL wouldn't write back to me personally (as I'm not AL's constituent - even though the issues were local to her). I think I managed to embarrass her into responding as I posted my mum's letter on Twitter and Facebook. She offered a meeting but backed out of that as it was scheduled after my mum's house was sold and so she was no longer a constituent.

But at least I got both of them to engage with this.

Andrew Dilnot on Today this morning said that those affected with dementia need to be louder. How can we do this?
Andrew Dilnot ? Who? I will google ... I am so out of touch with everything- just swamped trying to keep up with all the paperwork & trying to have a job!