MPs and Peers launch inquiry into cost of dementia care
- Thread starter Alzheimer's Society
- Start date
Dear Talking Point members
Craig has already commented today on news of a new inquiry by the All-Party Parliamentary Group (APPG) on Dementia into how to save money and deliver better quality dementia care. I would like you to encourage you to share your views on the topic either via talking point or emailing appg@alzheimers.org.uk
Just by way of background, the APPG is made up of MPs and Peers with an interest in dementia, and this is the fourth inquiry on dementia they have run since it was set up in 2007. Alzheimer’s Society provides administrative support and expert advice to the APPG.
The APPG, which will produce a report by summer 2011, wants to hear from people with dementia and their carers on how money that is currently spent on dementia care and support services, for example by local authorities and the NHS, could be saved or used in a different way to provide a better service.
These are the questions they would like to hear the views of people with dementia and their carers on:
• What activities or services improve the quality of life of the person with dementia? For example, a service that enables the person to live their life to the full, keep their independence, makes them feel part of a community and/ or treats the person with dignity.
• Are there any services or activities currently provided for people with dementia that are not useful or enjoyable to the person with dementia? If yes, how would you change that service or activity to make it more useful?
• What ideas do you have for how money that is currently spent on support and services for people with dementia, for example by local authorities and the NHS, could be saved and better value for money achieved?
To share your views on these questions please keep the debate going on talking point, email appg@alzheimers.org.uk or to find out more please visit the APPG on Dementia website at www.alzheimers.org.uk/appg. Thank you for your time, and please do let me know if you have any further questions by emailing appg@alzheimers.org.uk
Best wishes
Vicki Combe
Public Affairs Manager
Alzheimer’s Society
Craig has already commented today on news of a new inquiry by the All-Party Parliamentary Group (APPG) on Dementia into how to save money and deliver better quality dementia care. I would like you to encourage you to share your views on the topic either via talking point or emailing appg@alzheimers.org.uk
Just by way of background, the APPG is made up of MPs and Peers with an interest in dementia, and this is the fourth inquiry on dementia they have run since it was set up in 2007. Alzheimer’s Society provides administrative support and expert advice to the APPG.
The APPG, which will produce a report by summer 2011, wants to hear from people with dementia and their carers on how money that is currently spent on dementia care and support services, for example by local authorities and the NHS, could be saved or used in a different way to provide a better service.
These are the questions they would like to hear the views of people with dementia and their carers on:
• What activities or services improve the quality of life of the person with dementia? For example, a service that enables the person to live their life to the full, keep their independence, makes them feel part of a community and/ or treats the person with dignity.
• Are there any services or activities currently provided for people with dementia that are not useful or enjoyable to the person with dementia? If yes, how would you change that service or activity to make it more useful?
• What ideas do you have for how money that is currently spent on support and services for people with dementia, for example by local authorities and the NHS, could be saved and better value for money achieved?
To share your views on these questions please keep the debate going on talking point, email appg@alzheimers.org.uk or to find out more please visit the APPG on Dementia website at www.alzheimers.org.uk/appg. Thank you for your time, and please do let me know if you have any further questions by emailing appg@alzheimers.org.uk
Best wishes
Vicki Combe
Public Affairs Manager
Alzheimer’s Society
It's amazing to learn that there is going to be an all party inquiry into spending money more effectively on dementia. It shows how far from the sharp end MPs are of all administration and all aspects of dementia. During my years of caring I saw so very much waste in the whole system. Form what I read on TP little has changed in recent years.
Too many so called experts make the decisions. I'd like to know how many doctors, MPs and other spokespersons on dementia have actually experienced the care for a loved one through the whole journey.
There are so many areas of waste in the NHS. Here is just one of many: What is the cost to the NH and the economy of medication for carers who suffer stress and depression due to poor support and loss of work days?.
Too many so called experts make the decisions. I'd like to know how many doctors, MPs and other spokespersons on dementia have actually experienced the care for a loved one through the whole journey.
There are so many areas of waste in the NHS. Here is just one of many: What is the cost to the NH and the economy of medication for carers who suffer stress and depression due to poor support and loss of work days?.
Moderator Note:
In order to (hopefully) avoid confusion, we have merged the two threads with the same name. I have also removed any posts that related to the problem of having two threads. If you wish to comment on the APPG please do so on this thread, or via the email address in Vicki Combes post above.
In order to (hopefully) avoid confusion, we have merged the two threads with the same name. I have also removed any posts that related to the problem of having two threads. If you wish to comment on the APPG please do so on this thread, or via the email address in Vicki Combes post above.
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What is APPG for?
I smell a rat. Isn't it revealing that the APPG sets out its remit on the consultation process with weasel phrases like:'save money and deliver better quality dementia care'. We accept the necessity for a rationing system in health care and that choices have to be made, but since when has any parliamentary apparatus or consultation ever delivered REAL reforms or benefits for dementia services amongst the many other equally deserving and desperately treated causes? We may be encouraged on this forum to take part in this latest consultation but where have previous such exercises ever got us? Indeed, and without 'soapboxing', I would go so far as to suggest that the entire consultation process is a device to distract us, much as this forum acts as a safety valve for letting off steam by its contributors.
I was as moved by the contributions as others from those responding to A Defining Moment thread from Tender Face. In contrast to the measured and oh so po faced deliberations of a set of cross bench MPs who take part in these committees because it looks to their constituents that they are doing something about things, the cries from the heart of actual carers make me wonder if any MP actually has an aged parent with dementia or Alzheimers, has actually ever entered a care home.
Are we being hoodwinked? What exactly does AZS consider is 'campaigning' to better the Cause if such care homes and neglect are permitted to blight British society and MPs talk about 'saving money'? Direct action or continuing despair.
I smell a rat. Isn't it revealing that the APPG sets out its remit on the consultation process with weasel phrases like:'save money and deliver better quality dementia care'. We accept the necessity for a rationing system in health care and that choices have to be made, but since when has any parliamentary apparatus or consultation ever delivered REAL reforms or benefits for dementia services amongst the many other equally deserving and desperately treated causes? We may be encouraged on this forum to take part in this latest consultation but where have previous such exercises ever got us? Indeed, and without 'soapboxing', I would go so far as to suggest that the entire consultation process is a device to distract us, much as this forum acts as a safety valve for letting off steam by its contributors.
I was as moved by the contributions as others from those responding to A Defining Moment thread from Tender Face. In contrast to the measured and oh so po faced deliberations of a set of cross bench MPs who take part in these committees because it looks to their constituents that they are doing something about things, the cries from the heart of actual carers make me wonder if any MP actually has an aged parent with dementia or Alzheimers, has actually ever entered a care home.
Are we being hoodwinked? What exactly does AZS consider is 'campaigning' to better the Cause if such care homes and neglect are permitted to blight British society and MPs talk about 'saving money'? Direct action or continuing despair.
I'm quite angry that the three questions on the first post on this thread do not address what is currently at fault with the care system!
What activities or services improve the quality of life of the person with dementia? For example, a service that enables the person to live their life to the full, keep their independence, makes them feel part of a community and/ or treats the person with dignity. •
MY REPLY:
A large section of dementia patients are well beyond the moderate stage and must have their basic care needs addressed ABOVE ALL ELSE!! Basic needs such as washing, dressing, toileting, feeding are not being properly done for far too many dementia sufferers. Unless these basic needs are met there can be no 'add on's' which improve the quality of life!!!
Are there any services or activities currently provided for people with dementia that are not useful or enjoyable to the person with dementia? If yes, how would you change that service or activity to make it more useful?
MY REPLY
Many care homes or care workers working in people's homes are so understaffed/short of enough basic time with sufferers, or are so badly trained that there are currently few useful, enjoyable services in existance and to ask the question what could be added is irrelevant considering the current level of staffing provision.
• What ideas do you have for how money that is currently spent on support and services for people with dementia, for example by local authorities and the NHS, could be saved and better value for money achieved?
MY REPLY
Money currently spent on provision has little or no safeguarding procedures in place. Proper Government laws stating clearly what is expected and properly drawn up contracts between the service reciever and the service giver with recourse to legal assistance if they are broken would go some ways to ensuring that the money which is spent is giving proper value. There are enough threads on this site alone to show that although an hour's time has been paid for it has not been received.
The CQC has a reduced budget and is insufficuently funded to 'police' care homes and is relying on relatives etc to give them warnings of substandard care without any inspections anyomore and there is little already in place for care in the home to have any regulated and 'policed' official body to register a complaint or monitor the services given.
Let's get the basics in place before we go for 'add ons'.
TinaT
What activities or services improve the quality of life of the person with dementia? For example, a service that enables the person to live their life to the full, keep their independence, makes them feel part of a community and/ or treats the person with dignity. •
MY REPLY:
A large section of dementia patients are well beyond the moderate stage and must have their basic care needs addressed ABOVE ALL ELSE!! Basic needs such as washing, dressing, toileting, feeding are not being properly done for far too many dementia sufferers. Unless these basic needs are met there can be no 'add on's' which improve the quality of life!!!
Are there any services or activities currently provided for people with dementia that are not useful or enjoyable to the person with dementia? If yes, how would you change that service or activity to make it more useful?
MY REPLY
Many care homes or care workers working in people's homes are so understaffed/short of enough basic time with sufferers, or are so badly trained that there are currently few useful, enjoyable services in existance and to ask the question what could be added is irrelevant considering the current level of staffing provision.
• What ideas do you have for how money that is currently spent on support and services for people with dementia, for example by local authorities and the NHS, could be saved and better value for money achieved?
MY REPLY
Money currently spent on provision has little or no safeguarding procedures in place. Proper Government laws stating clearly what is expected and properly drawn up contracts between the service reciever and the service giver with recourse to legal assistance if they are broken would go some ways to ensuring that the money which is spent is giving proper value. There are enough threads on this site alone to show that although an hour's time has been paid for it has not been received.
The CQC has a reduced budget and is insufficuently funded to 'police' care homes and is relying on relatives etc to give them warnings of substandard care without any inspections anyomore and there is little already in place for care in the home to have any regulated and 'policed' official body to register a complaint or monitor the services given.
Let's get the basics in place before we go for 'add ons'.
TinaT
These links might be relevant to understand more about the All-Party Parliamentary Group on Dementia:
http://www.dementiaaction.org.uk/info/2/action_plans/11/all-party_parliamentary_group_on_dementia
http://alzheimers.org.uk/appg/
The things Government urgently needs to address:
Government urgently needs to put everything they have into fighting this Alzheimers epidemic - for the good of all.
I hope any Government initiative would address the following 3 points:
1) To find 'a cure' and/or 'what is causing' such an out-pouring of dementia.(I don't buy into "its because people are living longer", or "use it or lose it". Those sort of statements are not getting to the root of the problem. Younger people are getting Alzheimers and very intelligent people are getting it!!! There has to be something - in the water, in our food, in the atmosphere!)
2) To provide affordable care for all - which doesn't involve means testing(and doesn't leave families penny-less and home-less after care)
3) Efficient and easily accessible services to long and short-term care.
Knowing that these 3 aspects were being seriously and urgently addressed would allow sufferers and carers alike the chance of being able to sleep at night!!!
Government urgently needs to put everything they have into fighting this Alzheimers epidemic - for the good of all.
I hope any Government initiative would address the following 3 points:
1) To find 'a cure' and/or 'what is causing' such an out-pouring of dementia.(I don't buy into "its because people are living longer", or "use it or lose it". Those sort of statements are not getting to the root of the problem. Younger people are getting Alzheimers and very intelligent people are getting it!!! There has to be something - in the water, in our food, in the atmosphere!)
2) To provide affordable care for all - which doesn't involve means testing(and doesn't leave families penny-less and home-less after care)
3) Efficient and easily accessible services to long and short-term care.
Knowing that these 3 aspects were being seriously and urgently addressed would allow sufferers and carers alike the chance of being able to sleep at night!!!
Appg
I agree with SueENG. Her three points go to the heart of the issue/problem.
The point about cause/cure points my thinking towards science and technology (if only the funding were there) as carriers of potential for fighting dementia. IMO what we are dealing with here is the 'faulty machinery of the mind' Lawrence Durrell), so that technical interventions will go further in effecting change and improvement, such as implants and nano-technology, along with enhancements that switch the emphasis from the carbon construction of the brain and our bodies towards silicon-based constructs. Dependence on the bio-medical model, which places us in the grip of doctors and the big pharma companies, is becoming more and more a circularity of despair, in which the NHS and care homes as well as the welfare state, fail utterly to 'solve' the heartache of mental illness and decay and ageing.
Of course this is speculative given the state's abysmal record on science investment and research. So Sue's second and third points combine the money problem and reform of health care. I am aware of being perhaps controversial at this point but it seems to me that dementia is always treated as private condition of the individual, hidden away, shaming and guilt-burdened, treated rather than mended, when it should be dealt with as a social issue, a collective and communal condition in which we are all involved. The priorities of successive governments when they are not ignoring the plight of dementia nationally and within society, is to throw too little money too late at each of the three sectors in a scatter gun way without a focus on a more concentrated delivery of cash to the elements that the APPG says it wants to address.
I agree with SueENG. Her three points go to the heart of the issue/problem.
The point about cause/cure points my thinking towards science and technology (if only the funding were there) as carriers of potential for fighting dementia. IMO what we are dealing with here is the 'faulty machinery of the mind' Lawrence Durrell), so that technical interventions will go further in effecting change and improvement, such as implants and nano-technology, along with enhancements that switch the emphasis from the carbon construction of the brain and our bodies towards silicon-based constructs. Dependence on the bio-medical model, which places us in the grip of doctors and the big pharma companies, is becoming more and more a circularity of despair, in which the NHS and care homes as well as the welfare state, fail utterly to 'solve' the heartache of mental illness and decay and ageing.
Of course this is speculative given the state's abysmal record on science investment and research. So Sue's second and third points combine the money problem and reform of health care. I am aware of being perhaps controversial at this point but it seems to me that dementia is always treated as private condition of the individual, hidden away, shaming and guilt-burdened, treated rather than mended, when it should be dealt with as a social issue, a collective and communal condition in which we are all involved. The priorities of successive governments when they are not ignoring the plight of dementia nationally and within society, is to throw too little money too late at each of the three sectors in a scatter gun way without a focus on a more concentrated delivery of cash to the elements that the APPG says it wants to address.
