Author: Shaky
Topic Replies: 0

Dementia costs Britain 23 billion pounds a year, more than cancer and heart disease combined, and the number of sufferers is expected to rise nearly 20 percent to over a million by 2025, experts said Wednesday.

Health

A study for the Alzheimer's Research Trust (ART) by Oxford University researchers found that the cost of caring for dementia sufferers, mainly elderly people, is far higher than previously thought, and that dementia receives only a fraction of the funds spent on other important diseases.

"The UK's dementia crisis is worse than we feared. This report shows that dementia is the greatest medical challenge of the 21st century," ART chief executive Rebecca Wood said in a statement with the study.

She called for more funding for research into dementia, a brain-wasting disease which robs patients of their memory and their ability to understand things and care for themselves.

"If we spend a more proportionate sum on dementia research, we could unleash the full potential of our scientists in their race for a cure. Spending millions now really can save us crippling multi-billion pound care bills later," she said.

Alzheimer's disease is the most common form of dementia, and Alzheimer's Disease International says some 35 million people around the world now suffer from it or other types of dementia.

The number of cases globally is expected to almost double every 20 years to 66 million in 2030 and over 115 million in 2050, and the cost of coping with the disease in aging populations is forecast to rise dramatically in coming decades.

An independent spending watchdog accused the British government last month of doing too little to implement a plan to tackle urgent demand for better dementia care.

Wednesday's report estimated the number of dementia sufferers in Britain now at 822,000, higher than previously thought, rising to more than one million by 2025.

Combined government and charitable spending on research totals just 50 million pounds a year for dementia, compared with 590 million pounds for cancer and 169 million pounds for heart disease.

Alastair Gray, the report's author and a professor of health economics at Oxford University, said the discrepancies between the funds available for dementia and its economic burden and those for other diseases were reflected in public perceptions of the disease.

"Many of us know people who have had cancer or heart disease but have been successfully treated and survived, so there is a perception that something can be done," he said.

"In contrast there are no cures for dementia ... so there may well be a feeling of inevitability surrounding it. However the lack of effective treatments is surely an argument for devoting more effort to research, not less," he said

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

As much as £8.2 billion is being spent inefficiently on dementia care every year a report by the National Audit Office (NAO) said today (Thursday, 14 January 2010).

'Improving Services for People with Dementia' found that while dementia is a national priority, it often isn't at a local level, despite the condition costing more than heart disease, stroke and cancer combined. The report looks at progress of the National Dementia Strategy for England 12 months on from its launch and finds that significant steps have been made but more needs to be done to improve care and save millions.

New research in the report finds that over half of GPs surveyed haven't had adequate training and almost a third remain unconfident in diagnosing dementia. Only 21 per cent of consultants said a senior clinician had taken the lead for improving dementia in their hospital and only 15 per cent of psychiatrists reported that their PCT had invested extra funds into their service. The report recognised much groundwork has been done but concludes that the Department of Health must put in place the levers necessary to deliver the Strategy.

Andrew Ketteringham, Director of External Affairs of Alzheimer's Society says,

'This influential report shows just how big the dementia crisis is. Change can't come soon enough for the millions of families battling daily with this devastating condition. The Strategy will transform lives but only if local health authorities are compelled to give dementia the priority it deserves. Millions depend on the Strategy succeeding. It's a race against time.'


Dawn Edmonds, 53, of Shropshire who cares for her husband Dave, 62, added, 'I love Dave but caring for a person with dementia is the most difficult job in the world. Every step has been a struggle, I've had to sell my house and even move to a different postcode to get the care Dave needed. I haven't worked in ten years and like millions of carers I have been pushed into poverty. The strategy is a chance for real change but across the country people have sat in rooms talking for too long. The time for talking is over. We now need action to get us out of this mess.'


Key findings of the report include:

Few frontline staff could identify leaders championing dementia. Nurses surveyed said they had received no information on the Strategy.

Joined up working between health and social care is patchy and people are still being admitted to hospital unnecessarily, have longer length of stays and enter residential care prematurely.

Only two Strategic Health Authorities were actively working with the care homes sector.

There has been no improvement in GP knowledge and awareness over five years. Dementia is not included in the core requirements for nursing degrees.

37 per cent of consultants surveyed said a multi-agency group had been formed in their area to plan implementation of the Strategy (41 per cent were unsure).

58 per cent of consultants have an older people's mental health liaison team in their general hospital.

Only 11 per cent of consultant psychiatrists could point to an agreed joint care pathways in their area (41 per cent were unsure).

Dementia is not a priority in the 2010 - 2011 NHS Operating Framework, nor is it featured in a set of national priorities against which local organisations performance is monitored.

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

A simple eye test monitoring the death of cells on the retina could move scientists closer to being able to monitor the progress of Alzheimer’s disease in humans according to research published today.

The study, which appears in Cell Death & Disease, used specific dyes that bind to cells on the retinas of animals that had been modified to develop some aspects of Alzheimer's disease. They then observed these cells and monitored the stage and type of cell death. It is believed this is the first time cell death has been monitored in retinas in live animals.

'We know as Alzheimer's disease develops, cells in the brain die and the brain shrinks. The study of this disease has been hampered by the difficulty of following the progress directly in the human brain. This research is very exciting as it opens up the possibility of observing individual cells on the human retina using a relatively non-invasive procedure. In the longer term this technique could be used for diagnostic purposes or to help researchers monitor the effects of drugs under development. However, much more research needs to be done before we know if we can get to this stage.

'A million people will develop dementia in the next 10 years yet research remains drastically underfunded. If we can delay the onset of dementia by five years we can halve the number of people who will die with the disease.'


Dr Susanne Sorensen

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

Justice over care home costs: NHS forced to refund £350,000 fees to grieving families

Three grieving families have won back almost £350,000 they were wrongly charged by the NHS for their relatives' care.

In two cases, the family home had to be sold to meet the huge costs for long-term Alzheimer's and Parkinson's care that should have been funded by the NHS.

The families, who managed to secure backdating of their claims for the entire period of care, are urging others battling for NHS funding to appeal to the Health Service Ombudsman and take legal action.
They say their cases prove that victory is possible, even though obstacles were put in their way at every turn.

So far, about £8million has been recovered by solicitors representing a further 750 families who claim they have been wrongly charged nursing home fees.

Tragically, in the latest cases all three patients died before their protracted and expensive cases were concluded.
Under English law, elderly people must pay for their own residential care unless their needs are health-related, though it is provided free in Scotland.
The Daily Mail's Dignity for the Elderly campaign has repeatedly highlighted the unfairness of the means test system which penalises families who need nursing care for conditions such as Alzheimer's.

Many are denied funding by primary care trusts - which foot the bill - because the disease itself does not automatically make the patient eligible for free NHS 'continuing care'.

Despite national guidelines, campaigners say local trusts have discretion over who qualifies for free 'continuing care', which results in many requests being unlawfully rejected.

The family of Judith Roe, who died of Alzheimer's aged 74 last October, won back more than £130,000 in care home fees which her local NHS trust had refused to pay, saying her condition was not health-related.
She was forced to sell her home of 30 years for £200,000 to pay the £600-a-week nursing home fees.

After a five-year battle, the Health Service Ombudsman ordered NHS Worcestershire to reimburse the fees.

Mrs Roe's son Richard, 40, wrote dozens of letters to the NHS Worcestershire Primary Care Trust begging them to reassess his mother.
He said: 'She was extremely ill. She couldn't make a cup of tea and forgot she had put food on the stove. It was clear she needed full-time care.
'I wanted to know just how ill my mother had to be before her condition was deemed a health issue. The way the health trust behaved was scandalous.

'I want anyone else going through a similar experience to know they may be entitled to care. Even if they're being told they're not entitled, they should fight for it.'

Paul Bates, chief executive of NHS Worcestershire - which has replaced NHS Worcestershire PCT - said: 'Decisions around eligibility for continuing NHS care are extremely difficult. There are clearly lessons for us to learn.'
Last month the family of 88-year-old Alzheimer's patient Marjorie Eyton- Jones won back the £165,000 they had paid in nursing home fees.
Mrs Eyton-Jones went into a Wirral nursing home in 1998 and the family was forced to sell her home after the local trust decided she did not need 24-hour nursing care and refused to foot the bill.

It was not until last month - two years after Mrs Eyton-Jones died - that the North West Strategic Health Authority decided the fees should have been paid from the start of her care.

Her son Gordon Line, who has a large legal bill to pay, said: 'It has been a long and emotional fight with obstacles put in our way at every step. It's upsetting it wasn't resolved before Mum died.'

The family of 54-year-old Rod Johnson fought a four-year battle with the Central and Eastern Cheshire PCT to get back the £51,500 they had to pay for his care after he suffered a brain haemorrhage which left him partly paralysed. He died last year.

His brother Stephen, of Acton Bridge in Cheshire, who has a £14,000 legal bill, said: 'The whole process is so frustrating. It destroyed my health.'
Andrew Harrop, head of policy for Age Concern and Help the Aged, said: 'The system for deciding where the line is drawn between free NHS continuing care and paid-for social care has been a mess for years.

'We strongly encourage anyone who believes they are unfairly missing out on NHS support to fight for their rights.'

Mail on-line - 19th August 2009

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

It is with much sadness that I have to report the death of my beloved Mother Pauline Shakespeare - thanks to her strength to hold on through over 10 years of Dementia suffering and our joint determination to wave the flag of injustice so other families would not be kicked from pillar to post by their regional PCT or LA in order to get or maintain Continuing Health Care Funding we are proud to keep this site up for all who may require support to know THEY ARE NOT ALONE

I hope that all the media attention, campaigning, petitions this website, all helped to educate and inform people of their right to Continuing Health Care under the NHS, If that's my Mom's legacy then I hope she would be as proud as I am for the national exposure we managed to generate for so many people caught up in the politics of caring for people with Alzheimers

RIP MOM - we will miss you x



_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 17

It is with much sadness that I have to report the death of my beloved Mother Pauline Shakespeare - thanks to her strength to hold on through over 10 years of Dementia suffering and our joint determination to wave the flag of injustice so other families would not be kicked from pillar to post by their regional PCT or LA in order to get or maintain Continuing Health Care Funding we are proud to keep this site up for all who may require support to know THEY ARE NOT ALONE

I hope that all the media attention, campaigning, petitions this website, all helped to educate and inform people of their right to Continuing Health Care under the NHS, If that's my Mom's legacy then I hope she would be as proud as I am for the national exposure we managed to generate for so many people caught up in the politics of caring for people with Alzheimers

RIP MOM - we will miss you x



_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

The pressure of being a carer has forced three out of four of them to "breaking point", according to a poll.

The survey of 1,941 unpaid carers found 74% said they had been stretched to their limits by caring for someone.

Frustration with the bureaucracy of accessing NHS care and benefits was the most common reason they cited as forcing them to breaking point.

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
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BBC PANORAMA LINK

http://news.bbc.co.uk/1/hi/programmes/panorama/5198760.stm

Transcript . . . .

A growing scandal: The NHS consultant answers questions

Older people, particularly older people with mental health problems, are being dealt with in a scandalous way. They are being pushed aside as if they are no longer part of our usual society, that they can no longer expect a fair deal from the, from the health care system.

Dr David Jolley
Psychiatrist of Late Life

Phil Shakespeare's campaign for NHS funded care for his mother is supported by an NHS Consultant, Dr David Jolley who is a psychiatrist of late life.

Dr Jolley regularly visited Pauline Shakespeare whilst visiting other patients living in her care home.

Although she was not a patient of his he knew her case well and he has strong views about the way the NHS is withholding fully funded care.

He was interviewed by Panorama's Vivian White.

VIVIAN: Why have you taken Phil Shakespeare's side in his dispute with the primary care trust over his mother, Pauline Shakespeare?

DR JOLLEY: My position is a professional one, and what I'm wanting to do is give, what I believe to be, an honest, professional opinion about his mother's condition, and her best interests because that's what I have to do as a professional.

VIVIAN: As I understand it, the argument of the primary care trust is that she has dementia before, and she has it now, but since she suffered a fall, she has fewer nursing needs now, than she did. So, from their perspective, whereas she was entitled to fully funded care before, now she's not entitled. I think that's their case. What do you think of their case?

DR JOLLEY: I do find those sort of interpretations very strange. As a clinician I see this lady as having a dementia that was present, is still present, will continue, and she will acquire more impairment between now and when she dies. A passing incident has been the fall. She's recovering from that but the overall requirements remain much the same. So, as a clinician, I stand back and I see someone who needed this form of care, still needs this care, and will need it, frankly, till she dies. And that's what I will wish to provide.

VIVIAN: Have they got a case or not?

DR JOLLEY: It's not a case which I understand, it's a dimension that's not mine. I'm a clinician, I see patients I deal with people. I think most ordinary folk will understand my perspective. It's not clouded by issues of finance, it's what is required by this individual. It might be medicine, it might be nursing care, it may be other sorts of therapy, and that's what I know about.

VIVIAN: Is that logic that the primary care trust have applied in this case an unusual one, or is their logic one that you've come across before?

DR JOLLEY: It's one that people are being encouraged to use. An approach that is preoccupied with finance, and there's also been educated by an idea that clinicians views should be set aside, or not taken as seriously as they have been in the past. There's a sort of suspicion that clinicians are not responsible. But, at another level, we're utterly responsible. We, we are the professionals involved with the care of patients, along with nursing colleagues and so on. There's a worry about postcode finance. You know, you might get a service in one place and not in another place.

VIVIAN: Are you suggesting that that reassessment of Pauline Shakespeare, that the new decision that she is no longer entitled, in the primary care trust's views, to full funded care, isn't actually driven by a clinical reassessment of her?

DR JOLLEY: The concern is that the main preoccupation is what is the best use of the money, or what is the best distribution of a limited finance. And my perspective has to be what's best for this individual. But taking into account that there is a limited purse. But once someone has been judged as to having deteriorated into this level of need, because of her progressive dementia, it's very unusual to feel that they can make a recovery sufficient that they should come out of that bracket. I think it's very important to have a longitudinal view.

Many of the people who are asked to make judgements, such as the ones you are describing, don't have any longitudinal knowledge, or any longitudinal commitment to that individual. So that's why I think the views of people like myself are important and worth listening to.

VIVIAN: Is Pauline Shakespeare getting worse or getting better?

DR JOLLEY: Over time she's progressively getting more impaired. That's the natural history of her dementia. She has done quite well in the nursing home that she's now living in, because the nursing staff, and the environment, has remained steady, people have responded to her, she's become known by them, and so, thank goodness, she's got a better quality of life than when she was first admitted, when she was more muddled and frightened, because she's become settled. That doesn't mean to say her underlying condition, her biological status, has changed, but she, she is now in a good balance. That's fine, and it should be maintained, it needs to be sustained like that.

VIVIAN: Do you think the perspective of the primary care trust, of the NHS in this instance, is unusual in your experience, or represents a more general problem?

DR JOLLEY: It does represent a more general problem, and it represents a setting aside of clinical views, and clinical assessments, in preference for a bureaucratic approach, which is about how to spend money, how to control the spend of money, so it is that people are not looked after as individuals with illnesses that have a long term cause, but just commodities that need to be seen to for a period of time. There's the fragmentation of care, the fragmentation of planning what's to happen, and fragmentation of understanding of what is the natural history, what are the natural needs of individuals. Now, I don't want to be unkind or unsympathetic to the people that find themselves in these positions. There's a major preoccupation with how much money is being spent, and so on. But in the end, I think it's counterproductive, because individuals are suffering, and I'm not at all convinced that we get better for the money out of this system.

People are spending a lot of time doing assessments that are nothing to do with therapy, but simply to do with the allocation the of funds.

VIVIAN: I'm sure that the NHS would say, that in this case, and other cases, the nurse assessors who do the assessment, are carrying out a clinical assessment. You're suggesting that it isn't a clinical process that they're engaged in. What do you think they're doing?

DR JOLLEY: I know many such nurses, and they are, by and large, smashing people. But what they're allowed is a one off picture of somebody at a point in time. What's very difficult for them is to have a longitudinal view. What people like myself, and the nurses who actually do the ongoing care have, is a better understanding of the long term picture. Who is this person, how did they come to be like this, and what's going to be their future? So I think what we have to say is very important. I mean, occasionally, perhaps we need to be checked, but I mean, we haven't any axe to grind other than wanting the best for our individual patients, and that is a reasonable thing for us to pursue.

VIVIAN: In your opinion, is the reassessment of Pauline Shakespeare, the decision that she's no longer entitled to fully funded continuing care, justified, or not?

DR JOLLEY: I'm puzzled by it. I hope that people will see that she requires ongoing care, funded in just the way that it has been. Because she hasn't suddenly got better. She's still got all those disadvantages, arising from the same illnesses. Thankfully she's recovered from the fall and the broken leg. That's the natural history of that pathology. But the other pathologies are still there, pursuing their natural histories, and requiring just as much input and support.

VIVIAN: As you know, the legal test as to whether you're entitled to free fully-funded health care by the NHS is meant to be whether you have a primary health need or not? The actual test in the criteria often goes to these words: unpredictability, intensity, complexity, stability of the condition. What do you think is the purpose of these words in the process?

DR JOLLEY: The words are being used so that it's possible to compare this situation with another situation. That's entirely reasonable. But the difficulty is they appear to be being used to ration situations and, and they describe individuals at points in time, and don't have a longitudinal perspective. So it is, as in Mr Shakespeare's situation, that it's possible for people to need health care this week and social care next week, and presumably health care again later on. And I don't think that's sensible when you have a continuity of pathology primary healthcare need that's producing the overall pattern of need.

VIVIAN: In your experience, is the Pauline Shakespeare case and the decisions that the primary care trust has taken in this case, which you find puzzling, which you disagree with, do you think that's peculiar to her case or do you think the same sort of thing happens in the continuing care system up and down the country?

DR JOLLEY: Up and down the country people are despairing or simply giving up and shrugging their shoulders. Older people, particularly older people with mental health problems are being dealt with in a scandalous way.

They are being pushed aside as if they are no longer part of our usual society, that they can no longer expect a fair deal from the health care system. If they have money then they should pay. But that's not right in my view. What's required is that whether you've got money or whether you haven't got money you get appropriate care for your health problems, whether their acute or long term.

For me it's a great tragedy because I've spent 30 years working with older people with mental health problems, particularly dementia, and in many ways we have made progress to improve matters for them, but this is a bizarre perversion of what we've all been trying to do.

And many ordinary people would say the same as I am now saying, because they've found that their parents, or their brothers or sisters are being dealt with in this way and people don't expect this to happen. It shouldn't be happening and I think all the authorities just need help in calming things down and getting back to proper common sense.

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 2

"This is a case where people have been swindled out of their savings, hounded out of their homes and conned out of the free care they deserve."
- Bleddyn Hancock, general secretary of NACODS South Wales.

The NACODS press release is here.

--------------------------------------------------------------------------------------

News release issued on behalf of NACODS South Wales

STRICTLY EMBARGOED UNTIL 12.01pm Monday, September 12, 2005

NACODS IN LEGAL FIGHT OVER NURSING CARE


THE union which won the right to compensation for thousands of miners for industrial injuries is to go to court again - to fight for the right to free nursing home care.

The National Association of Colliery Overmen, Deputies and Shotfirers (NACODS) South Wales claims that tens of thousands of people across the UK are being wrongly charged for places in nursing homes which should be provided free as 'continuing care' by the NHS.

Bleddyn Hancock, general secretary of NACODS South Wales said: "This is a case where people have been swindled out of their savings, hounded out of their homes and conned out of the free care they deserve.

"The Government should urgently look to reimburse those people they have wrongly charged."

The Court of Appeal has already stated that the NHS must pay when a person's primary need is a health need, but Mr Hancock says a patient needs to be 'at death's door' before the NHS is willing to pay.

Now the union is to mount legal challenges against local health boards that are refusing to pay for the nursing care of some of their members.

NACODS believes that if the test cases are successful they could result in health boards across the UK reviewing the cases of hundreds of thousands of nursing home residents who are being wrongly charged for their care.

Mr Hancock claims that the action could have the same impact as the miners' compensation case - which resulted in the largest industrial injury payout in history.

Cases that the union plans to fight include that of Morfydd Jones from Ystalyfera in Neath Port Talbot.

The 85-year-old widow requires 24 hour care at Cwrt Enfys Nursing Home in the town.

She has endured a long history of deteriorating health, and then suffered a series of small heart attacks. However, her husband, despite being registered blind, was able to look after her with help from the family and home carers.

Morfydd's health continued to deteriorate, however, and she was admitted to Ystradgynlais Community Hospital.

But because she needed ongoing care and could not look after herself she went into nursing home care and is currently at Cwrt Enfys where she has been for around three years.

Now she is also suffering from Alzheimer's disease and needs 24 hour supervision.

The nursing home fees are not paid for by the NHS despite the need for continuing care, periods in hospital and continuing medical deterioration.

Her son Arwel said: "My parents sold their house in Ystalyfera because when my mother started having the strokes it was easier for them being on the ground floor.

"But my mother still has to pay for the nursing home with whatever money she had and she was in receipt of my father's superannuation pension from the coal board."

Arwel says his mother should not be paying her own nursing home fees.

"I don't feel it should be paid by my mother. Don't get me wrong - if she won the lottery she wouldn't be able to spend the money because of the state she is in - that isn't the point. It is nothing to do with the money.

"I always remember my father telling me he was paying into his pension because he believed in the system. They were not earning very much but he started at an early age as an overman in a colliery because he wanted to have it in their retirement."

The union is being supported in its legal action by Hugh James Solicitors, which has worked closely with the union during a series of recent compensation battles.

Nicola Martin, from Hugh James Solicitors, said: "Hugh James has worked with NACODS for over 20 years, supporting the union in its successful campaigns to gain access to justice for its members.

"NACODS deserves enormous credit for redressing the balance in favour of the ordinary working man and woman and has an unrivalled track record in the field of industrial diseases.

"The union's ground-breaking work in gaining recognition for disabling work-related conditions such as Vibration White Finger and chronic chest diseases should not be underestimated and we will work with NACODS to help ensure success with this latest campaign to win the right to free nursing home care for retired members."

A series of public meetings have also been organised by NACODS across South Wales for people to discuss the issue of NHS Continuing Care.

Contact Details

For more information about this press release please contact Alastair Milburn at amilburn@effcom.co.uk or telephone 029 2066 0119 or mobile 07813 857328. Bleddyn Hancock, general secretary, NACODS South Wales - 02920 470992 or mobile 07778 979312. Arwel Jones, son of Morfydd Jones - 01639 843442.

NACODS is the National Association of Colliery Overmen, Deputies and Shotfirers.

NACODS Wales represents up to 1,000 retired members and widows from the South Wales coalfield, and another 200 from the former Kent coalfield.
It also represents around two dozen working members in the last surviving deep pit in the South Wales coalfield at Tower Colliery, near Hirwaun.
NACODS began its successful fight for compensation for retired miners with chest disease in 1988 and is still dealing with cases.
It has been campaigning for compensation for victims of Vibration White Finger, and also represents members and their relatives in benefit appeals.
The association is now campaigning for compensation for retired miners suffering with knee injuries sustained at work.
It is also launching a new fight in the courts to win the right to free nursing home care for retired members.
NACODS general secretary in South Wales is former miner Bleddyn Hancock, who worked in the Merthyr Vale pit for 17 years.
The assistant general secretary is Alun Davies, who spent 27 years in the industry, starting at Fernhill Colliery at the age of 15.
Ends

See Bleddyn on TV here,

http://www.youtube.com/watch?v=JV9uuw1-zV4

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 2

For more information check out Robin Lovelock's site . . .

www.NHSCare.info

your right to 100% NHS funded Continuing Care
under UK law and the Coughlan case

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 1

for more information check out my good friend Stephen Johnson's site.

www.continuingcarecampaign.info

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 2

Make sure you are not breaking the law. Ignorance of the law, and the fact that many others share this ignorance, is no defence in a Law Court.

The Department of Health's National Framework is "...not fully compliant with the Coughlan judgement...” - "Social Care" is part of Nursing Care when applied to this criteria.

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 1

"The judgment in Coughlan clearly establishes that where a person's primary need is for health care, and that is why they are placed in nursing home accommodation, the NHS is responsible for the full cost of the package. "

- The Law Society

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

Nearly two-thirds of people with dementia live in the community
The government says it is making dementia a top priority as it calls on experts to find ways to reduce its spiralling burden on society.
There are 560,000 people with dementia in England, each costing the economy £25,391 every year.

But an ageing population means this figure is set to double in the next 30 years with predictions of more than a million people with dementia by 2025.

The National Dementia Strategy group has 12 months to find solutions.


The current system is failing too many dementia sufferers and their carers
Ivan Lewis - Care Services Minister

Caring for people with dementia costs the NHS and social care services at least £3.3 billion a year.

However, the overall annual economic burden in England is estimated at £14.3 billion.

Care Services Minister Ivan Lewis said: "The scale of our ambition must now meet the scale of the challenge as demographic realities mean dementia will impact on an increasing number of families in our society.

"The current system is failing too many dementia sufferers and their carers.

"I am determined that this disease is brought out of the shadows."

He said there were three key areas - disease awareness, early diagnosis and high quality treatment - where improvements had to be made.

Disease burden

Nearly two-thirds of people with dementia live in the community, cared for by some 476,000 unpaid friends or relatives.

Taxpayers contribute about £3.3 billion towards direct health and social care services for people with dementia.

But £5.2 billion of the informal care costs and 30% of the £5.8 billion of care home costs are borne by families.

There are currently no treatments that can prevent or cure dementia, although there are some therapies that can delay the progression of symptoms.

But in terms of the percentage of suitable patients receiving these anti-dementia drugs, UK performance is in the bottom third in Europe.

And the average reported time to diagnose the disease in the UK is also up to twice as long as in some countries.

Urgent need

Professor Sube Banerjee, professor of mental health and ageing at the Institute of Psychiatry, King's College London, will head the national strategy team. This will include representatives from the voluntary sector, professional bodies and individual experts.

Professor Banerjee said: "Dementia is one of the largest and most important public health and social care challenges that we face.

"We need to act now to develop services."

Neil Hunt, chief executive of one of the strategy members, the Alzheimer's Society, said: "For too long dementia has been at the bottom of the health and social care pile.

"This represents a real step forward in policy towards dementia."

A recent National Audit Office "Value for Money" report said, historically, the Department of Health had given little priority to dementia, partly because of the focus on other major diseases such as cancer and heart disease.

Progress has also been hampered by a lack of good quality data, by stigma, and by the low level of political and national focus on older people's mental health, it said.

A verdict on the first-ever challenge of a decision by the government's drugs watchdog the National Institute for Health and Clinical Excellence (NICE) over the provision of Alzheimer's drugs is due on Friday.

NICE says only people with moderate stages of Alzheimer's should have access to drug treatments.

The Alzheimer's Society, among others, has been challenging this decision in the High Court. It says people with early stage disease should also be eligible for treatment on the NHS.

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TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

By request here is our guide . .

Some useful points deemed from Barbara Pointons battle for continuing care funding for her husband Malcolm.

1. Get a copy of your local primary care trust’s policy and eligibility criteria for NHS-funded continuing health care for people with dementia and for people with physical/sensory disabilities. (Remember its just been revised - check policy time-frame)

2. Go to meetings with your case set out as you see it, and make sure they have a copy. You will then have a check-list to refer to. It’s useful evidence for later as well.

3. Ask at the beginning of the meeting what the assessment is for – personal/nursing care, or eligibility for NHS-funded continuing health care. This confusion characterises the whole case. So make sure you are very clear about the purpose of any health or social services assessment.

4. Don’t sit at home saying Aaaaaaargh! Politely put your grievances in writing and also copy your letter to a person more senior than the one you are dealing with. You never know when it will come in useful. Save all paperwork and copies of letters.

5. Start to bring in professional backing (eg a GP) – and in writing.

6. Ask someone neutral, but savvy, such as a person from your local branch of the Society, if they would be willing to observe, take notes and be a moral support at meetings.

7. Public law is very complicated. Unless you know the ropes,
employ a solicitor who is very experienced in this kind of thing. It’s worth it. A solicitor is able to support major points of your complaint with detailed
law and/or to Department of Health guidance.

8. For complex issues, tape-recording a meeting provides the most accurate record.

9. Ask Data Services for an Access to Records form so that you can obtain copies of the patient’s medical records concerning the incident(s) in question. (A fee may be charged).

10. Keep the ombudsman and your MP informed.

11. If stalemate is reached, bring in an independent expert witness.

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TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 2

All links active except DVD 1 at this time, were working on it . . .

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TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 1

Sorry but I'm not familiar with U.S. law - were trying to iron out the inconstancy in the U.K. before we take on the planet!

A level playing field of CHC funding in England is our ultimate goal.

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TCB, Shaky

(fightthebureaucracy.org)

Author: tundreq
Topic Replies: 1

Are Health insurance providers responsible for the current state of the health care crisis in the U.S.?

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student

Author: Shaky
Topic Replies: 0

Sube Banerjee: Dementia care pathway is 'unnavigable mess'
Joint dementia strategy lead says diagnosis is key

The current care pathway for people with dementia is "confusing, awful" and "an unnavigable mess", Sube Banerjee, the joint lead on the government's national dementia strategy, said last week.

Banerjee told Community Care's conference on dementia and dignity that the current system made it much easier not to be diagnosed than to be diagnosed.

He added: “Only a third of people are diagnosed and for most of them it happens too late. For me, diagnosis unlocks the whole system.”

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TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 2

<<The Pauline Shakespeare Campaign for Awareness DVD - Part One>>

May need to be reworked due to copyright issues and You Tube getting touchy - watch this space for a newer improved tighter and fresher new edit.




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TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

The government has finally stepped into address dementia care in the UK (?) by publishing its first ever strategy to tackle dementia. It is long over due. Dementia is the health and social care challenge of the decade. The condition costs the UK a staggering £17billion a year and affects 700,000 people in the UK. Moreover the problem is not going away; it is getting worse. Numbers living with dementia will double and costs will triple in the next 30 years.

The strategy outlines a vision of working together to deliver a seamless service under four key themes:

Professional and public awareness
Improving early diagnosis and support
Living well with dementia
Making the change happen

Lets cross our fingers its action not spin!?!?!

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TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

RELOADED AWARENESS DVD

The Pauline Shakespeare Campaign for Awareness DVD - Part One

http://uk.youtube.com/watch?v=HkUI1_r-9Us

The Pauline Shakespeare Campaign for Awareness DVD - Part Two

http://uk.youtube.com/watch?v=JGeZqwVtVbc

The Pauline Shakespeare Campaign for Awareness DVD - Part Three

http://uk.youtube.com/watch?v=B1EJuHDmhsA

The Pauline Shakespeare Campaign for Awareness DVD - Part Four

http://uk.youtube.com/watch?v=UTPTlm4aA_s

The Pauline Shakespeare Campaign for Awareness DVD - Part Five

http://uk.youtube.com/watch?v=lk6tT72BTOM

Awareness DVD - Part Three

http://uk.youtube.com/watch?v=MI43hCl_dRc

Awareness DVD - Part Four

http://uk.youtube.com/watch?v=TmAmyiHI7gY

Awareness DVD - Part Five

http://uk.youtube.com/watch?v=YUHGLAEiJ5w

Manchester Exchange - Part One

http://uk.youtube.com/watch?v=JV9uuw1-zV4

Manchester Exchange - Part Two

http://uk.youtube.com/watch?v=PRC2Jq6MGcI

Manchester Exchange - Part Three

http://uk.youtube.com/watch?v=ak-GKCiiAHU

Week In, Week Out - Part One

http://uk.youtube.com/watch?v=FfScRCguseo

Week In, Week Out - Part Two

http://uk.youtube.com/watch?v=CEAWNVxB3wA

Rod Johnson's Struggle for CHC

http://uk.youtube.com/watch?v=eXx4T-mjyXo

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 2

RELOADED AWARENESS DVD

The Pauline Shakespeare Campaign for Awareness DVD - Part One

http://uk.youtube.com/watch?v=HkUI1_r-9Us

The Pauline Shakespeare Campaign for Awareness DVD - Part Two

http://uk.youtube.com/watch?v=JGeZqwVtVbc

The Pauline Shakespeare Campaign for Awareness DVD - Part Three

http://uk.youtube.com/watch?v=B1EJuHDmhsA

The Pauline Shakespeare Campaign for Awareness DVD - Part Four

http://uk.youtube.com/watch?v=UTPTlm4aA_s

The Pauline Shakespeare Campaign for Awareness DVD - Part Five

http://uk.youtube.com/watch?v=lk6tT72BTOM

Awareness DVD - Part Three

http://uk.youtube.com/watch?v=MI43hCl_dRc

Awareness DVD - Part Four

http://uk.youtube.com/watch?v=TmAmyiHI7gY

Awareness DVD - Part Five

http://uk.youtube.com/watch?v=YUHGLAEiJ5w

Manchester Exchange - Part One

http://uk.youtube.com/watch?v=JV9uuw1-zV4

Manchester Exchange - Part Two

http://uk.youtube.com/watch?v=PRC2Jq6MGcI

Manchester Exchange - Part Three

http://uk.youtube.com/watch?v=ak-GKCiiAHU

Week In, Week Out - Part One

http://uk.youtube.com/watch?v=FfScRCguseo

Week In, Week Out - Part Two

http://uk.youtube.com/watch?v=CEAWNVxB3wA

Rod Johnson's Struggle for CHC

http://uk.youtube.com/watch?v=eXx4T-mjyXo

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: harsha
Topic Replies: 4

Author: Shaky
Topic Replies: 4

This advice is taken from the excellent www.nhscare.info please bookmark this site in your favourites and refer to it often!

SHOULD YOU PAY FOR THE NURSING HOME ?

your right to 100% NHS funded nursing care
under the law since 1948 and "Coughlan"
see www.NHSCare.info for this advice

"The judgment in Coughlan clearly establishes that where a person's primary need is for health care, and that is why they are placed in nursing home accommodation, the NHS is responsible for the full cost of the package. "

simple advice for solicitors ...

The quote above is from the summary of the Law Society's Evidence to the House of Commons Health Committee Inquiry into NHS Continuing Care.

Simple advice for NHS and Social Services staff ...

Make sure you are not breaking the law. Ignorance of the law, and the fact that many others share this ignorance, is no defence in a Law Court. Confirm that you have a case: discuss with close friends and relatives.
do what you feel is right for the patient. This may include going along with unlawful advice from Social Services. Make sure you have written at least one letter, mentioning Coughlan, such as this draft letter. Consider refusal to pay for care. If so, think it through and do what is best for the patient.
keep a paper file of all information such as printouts from the aforementioned www.nhscare.info, all letters and medical history.
take care what you sign when dealing with NHS and Social Services. Your signature might indicate agreement. If you feel you must sign, in the interests of the patient, then add a comment beside your signature such as "Without prejudice.
Record in writing any disagreement with NHS/Social Services: by them and by yourself soon after the meeting. They might later claim, "if it's not written down, it didn't happen". find a close friend or relative able to write and respond to letters over what may be many years.
consider writing a complaint letter to the Primary Care Trust (PCT)Consider a complaint to the Ombudsman.

ABOVE ALL SEEK LEGAL ADVICE FROM A SOLICITOR PROVEN IN NHS PRACTICE AND THE RIGHTS AND WRONGS OF CONTINUING CARE ASSESSMENT



_________________
TCB, Shaky

(fightthebureaucracy.org)