Showing posts with label old age. Show all posts
Showing posts with label old age. Show all posts

Tuesday 15 February 2011

Shocking accounts of poor patient care released-Helpline appeal launched

Shocking accounts of poor patient care released-Helpline appeal launched

Today the patients association publishes Listen to patients, Speak up for change, a collection of 17 firsthand accounts of hospital care of older patients from across the NHS. All told by people that had contacted our Helpline in the past year, these stories highlight serious failings in standards of nursing care, poor communication with relatives and an ineffective complaints handling system.
A follow up to last year’s Patients not numbers, People not statistics it’s publication marks the launch of a fundraising drive (supported by the Daily Mail) for the Patients Association Helpline as we try to deliver a more active support service. We are seeking to raise £100,000.
Find out what we will do with the money raised HERE
Patients Association President Claire Rayner, who passed away earlier this year, wrote the foreword for last years report and her son Jay Rayner writes the foreword this year in memory of Claire. Commenting on the launch of the report her husband, Des Rayner, said
“Let the haunting begin”
in reference to Claire’s famous last words ("Tell David Cameron that if he screws up my beloved NHS I'll come back and bloody haunt him!").
Chief Executive Katherine Murphy said:
'Surely the essentials of nursing care are what every patient deserves and should get? The NHS should get this right all of the time. Lack of help with eating and drinking. Lack of help with personal hygiene. Lack of help with toileting needs. It is clear from the stories we hear on our Helpline that too many patients are being badly let down. It’s a scandal and it’s outrageous that has been persisting for years. Families are left with a life sentence of grief, with no lessons learnt and the same failings continuing.'
‘The fact this problem hasn’t been properly addressed before is a sad indictment of our society. If we continue to ignore the problem, then many millions of us will end up in a similar position in the years to come. We will regret not having spoken out. Every single one of us needs to say enough is enough.’
‘The people who wrote these stories were not asking for the earth. They just wanted their relatives to be cared for, to have their basic needs met, for staff to show their loved ones kindness and compassion. I think we’d all want that if we were in their shoes.’
'The NHS has tried to bring back matron, but is hasn't worked. That absolute commitment to patient care seems to get sidelined by targets, finances and bureaucracy. What we need is a matron who can ignore all of that. They can tell Trust managers, ‘forget your strategic framework and middle manager initiatives, it is meaningless if patients are not getting the vital nursing care they are entitled to.'
'We've been told for years that the NHS is listening to patients, but where is the proof? Complaints are not being listened to. That is a fundamental thing that needs to be put right. The whole complaints system needs to be reviewed urgently starting with surveys for complainants so we can find out where the really poor performers are.'
'Patients and carers need to be able to call on a real advocate when they complain, someone to fight their corner.'
‘When we published our report in 2009 we were inundated and ever since we have heard story after story after story. Our calls are going up and with the help of the Daily Mail readers we will try to make sure everyone who contacts us gets the help they need.’
Kieran Mullan from the Patients Association supported the story tellers during the difficult process of producing their accounts and commented:
'Their grief is palpable. Many of them feel guilty that the system disempowered them so thoroughly. Taking part in the report reminds them they are not alone, that it was not their fault. It is the system they were up against that is at fault.'
'It is vital that other people show the courage these people have shown because unless people speak out the problems will continue. It was a privilege to help them do this. We can't publish everyone's story, but everyone's story helps us to shout from the roof tops as loud as we possibly can.'
'When I took the stories and showed them to Claire last year she was upset and then she was angry. We know she would have been even more angry that these things are still happening. We should all be angry. This is our NHS run by our Government. The NHS exists to meet our needs and the needs of our families and friends. We shouldn't tolerate such abysmal failings. Our story tellers are speaking out. They are saying enough is enough. We all need to get behind them.’
On the plans for the Helpline, Michael Watson Helpline Manager said
‘We want the resources to help more individuals to make their voices heard locally. Whether that be writing letters to Trusts and MPs, putting them in touch with local patient groups, getting them expert advice. Anything we can do to help. At the moment we are limited to sign posting, helping people to help themselves. The need is just so great that we are determined to do more and we hope people can support us and donate to the appeal.’
To make a donation by cheque please send cheques to The Patients Association, PO Box 935, Harrow, Middlsex, HA1 3YJ.
To make a donation online please visi

NHS 'failing to treat elderly with care and respect'

NHS 'failing to treat elderly with care and respect'

Elderly patient The elderly population is set to double over the next 25 years

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The NHS is failing to treat elderly patients in England with care, dignity and respect, an official report says.

The Health Service Ombudsman came to the conclusion after carrying out an in-depth review of 10 cases.

The ombudsman, which deals with serious complaints against the NHS, said the patients - aged over 65 - suffered unnecessary pain, neglect and distress.

Charities said the findings were "sickening", while the government admitted improvement was needed.

While the report is only based on 10 cases, the ombudsman said they were far from isolated examples.

Of nearly 9,000 complaints made to the ombudsman last year, 18% were about the care of older people. In total, it accepted 226 cases for investigation - twice as many as for all the other age groups combined.

Ageing population

The report concluded there was a gulf between the principles and values of the NHS and the reality being experienced by older patients.

And the ombudsman, which is called in once a complaint cannot be resolved by individual NHS trusts, said the fact there was an ageing population made it even more essential that the concerns were dealt with.

Several themes became clear from the ombudsman's analysis. Half the people featured did not consume adequate food or water during their time in hospital.

Case study

After being admitted to hospital with severe abdominal and back pains, Mr D was diagnosed with advanced stomach cancer.

He asked to be discharged so he could die at home. But when his daughter arrived to collect him, she found him sitting behind a closed curtain in distress.

He had been left for several hours, was in pain, desperate to go to the toilet and unable to ask for help because he was so dehydrated that he could not speak or swallow.

The emergency button had been placed out of his reach, his drip had been removed, fallen and had leaked all over the floor.

At home, his family discovered Mr D had not been given the right pain relief.

His daughter said later: "It was as if he didn't exist." After investigating the case, the ombudsman found the trust had failed on a number of grounds.

Some were left in soiled or dirty clothes. One woman told the ombudsman how her aunt was taken on a long journey to a care home by ambulance.

She arrived strapped to a stretcher and soaked with urine, dressed in unfamiliar clothing held up by paper clips, accompanied by bags of dirty laundry, much of which was not her own.

Communication was also highlighted as a problem with one 82-year-old woman recalling how, on being discharged from hospital after minor surgery, she was frightened and unsure of how to get home.

She asked the nurse to phone her daughter, but was told "this is not my job".

In another case, a cancer patient wanted to be discharged to die at home. When his daughter arrived to collect him, she found him sitting behind a closed curtain in distress.

He had been left for several hours in pain and desperate to go to the toilet. He was unable to ask for help because he was so dehydrated that he could not speak or swallow.

'Harrowing'

Ann Abraham, the Health Service Ombudsman, said the accounts painted a picture of NHS provision that was "failing to meet even the most basic standards of care".

"These often harrowing accounts should cause every member of staff who reads this report to pause and ask themselves if any of their patients could suffer in the same way."

Michelle Mitchell, of Age UK, said: "The inhumane treatment of older people described in this report is sickening and should send shockwaves through the NHS and government."

And Katherine Murphy, chief executive of the Patients Association, added the report echoed the findings of research her group had done.

"How many reports do we have to have before anything will change and patients will stop suffering?"

Nigel Edwards, chief executive of the NHS Confederation, which represents NHS trusts, said the cases highlighted were "completely unacceptable".

But he added: "It is of course important to put these 10 examples in perspective. The NHS sees over a million people every 36 hours and the overwhelming majority say they receive good care."

Care services minister Paul Burstow agreed, but acknowledged standards still needed to improve.

"We need a culture where poor practice is challenged and quality is the watchword. The dignity of frail older people should never be sidelined."

He said the government's reforms of the NHS would strengthen the voice of patients.

Have you or your family been affected by any of the issues raised in this article? Send us your comments and experiences using the form below.

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Monday 15 November 2010

People 'denied' die at home wish

People 'denied' die at home wish

A nurse helping a terminally ill patient put on some make-up Two in five people who die in hospital are terminally ill and could be cared for elsewhere

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Too many people are dying in hospitals and care homes, and not at home the way they want to, says a report from Demos.

Of the 500,000 people who die each year in the UK, the think tank found only 18% die at home, yet 60% of people surveyed would like to.

Investing in community-based end of life care would also save the NHS money in the long term, the report says.

The Department of Health is reviewing funding for England. Services in the rest of the UK are funded locally.

The report, entitled Dying for Change predicts that by 2030 more people will die in hospital (65%) and fewer people will die at home (just one in 10 people).

In 10 years, Demos predicts that 20% of people will die in care homes, a figure currently at 17%.

Yet a poll of 2,127 people carried out as part of the report shows that two in three people would prefer to die at home, surrounded by family and friends.

Start Quote

People are dying over a longer period, losing first their memory and then their physical capacities...”

End Quote Charles Leadbetter Demos

This equates to more than 190,000 people dying in hospital each year when they would rather be at home.

Not everyone who dies in hospital knows they are going to, but many do.

Two in five people who die in hospital do not have curable conditions and most people will be ill for six years before they die.

It is estimated that 20% of hospital beds are currently taken up with caring for people who are dying.

Funding injection

The report says that investing £500m more a year would allow more of these people to die at home or with support in the community.

Setting up new places for people to die close to home, training volunteers to support the terminally ill, a 24-hour nursing support service and an "end of life telephone help line" are all suggestions the report makes on how this money could be spent.

It also proposes setting up a national "hospice at home" service to help support people dying at home.

A patient in a hospice More provision should be made for people to die in hospices and at home, the report says

Demos claims that making this investment would result in fewer and shorter hospital admissions, helping the NHS save money in the long term.

At present, around £20bn of NHS services is spent on end-of-life care.

This is forecast to rise to £25bn in 2030.

Charles Leadbeater, co-author of the Dying for Change report said: "It's not just that we're living longer; part of this means that people are dying over a longer period, losing first their memory and then their physical capacities in stages.

"If we put in the right kind of supports for people to cope at home, many tens of thousands of people could have a chance of achieving what they want at the end of life; to be close to their family and friends, to find a sense of meaning in death."

Care services minister Paul Burstow said the government wanted to ensure that the care people receive at the end of life is "compassionate, appropriate and gives people choices in where they die and how they are cared for".

"Identifying people approaching the end of life and advance care planning is an essential part of this," he said.

"We are consulting on extending patient choice and want to move towards a national choice offer that supports those who wish to die at home."

David Prailll, chief executive of the charity Help the Hospices, said the report would help to stimulate public debate.

"It also makes some very interesting suggestions about specific practical steps that could be taken at a national level and these merit deeper investigation."

"Seventy per cent of hospice care takes place in people's homes and a growing number of hospices - already over two-thirds - provide support to care homes to make sure residents get the palliative care they need," he said.

BBC News website readers have been sending in their reaction. Here is a selection of comments:

My husband was terminally ill with Angio Sarcoma at Guy's Hospital in August 2004. The doctor came to tell him that the cancer has spread to his other lung too. My husband said he would like to go home and yet the doctor made me feel that it would be more suitable if he stayed in the hospital. I did not understand why it would be more suitable for him to stay there. He died four days later. He was so sedated that he died without us getting a chance to say goodbye to him. I still keep worrying that I let him down by not insisting on him coming home. I still have not got over the way he died. It was so impersonal. Ranjna, London

My father died at home several years ago, which was his wish. He had been in and out of hospital and spent time in a local hospice, but it was at home where he wanted to be, and where my mother could best care for him. The GP was superb, there was a district nurse visiting regularly to help us prepare for his death, and although desperately sad for the family, it was what he and my mother wanted, and they were at peace with that. Penny, Dorset

I lost my mum and although she was totally dependant on me in the last years of her life, when it came to the end she died in hospital. I suppose because I couldn't bear to be alone when she died, not knowing if I was doing everything to make her going as painless as possible. I know in my heart that she would have forgiven me taking her in hospital but it is so hard for the loved ones to make that decision. We all, in an ideal world, would like to just go to sleep in our own bed at the end but real life isn't like that. Daisy, Reading

My mother died today in a care home. In her last few weeks she has needed continuous care and kindness to keep her clean, as she was incontinent. A hoist was needed to raise her weak body and a special bed was used to prevent bed sores and aid her in being fed. It is a nice idea that we should all die where we want to but life is not like that. My mother would also not have wanted to die in a care home but as it happens she had dementia and didn't know where she was. She had the very best of care, the bedroom was equivalent to her bedroom at home, so what is wrong with that? People would not get 24 hour care if they stayed in their own homes and the expense would be enormous if they privately hired a 24 hour a day carer. Christine, Portsmouth

I work for the NHS and it is very frustrating that patients can't die at home because of the paperwork. Sometimes it is also very dependent on your postcode. If your GP is in one PCT and you live in the next borough, you are not entitled to services as they do not receive from that borough. I speak from experience as I have recently had battles with two PCT's in getting services so that my patient could die at home. One solution given to me was that the patient changes his GP, but this is not always suitable when you have been with a particular GP and have built a relationship. As a health care professional I try very hard to give my patients the choice of dying at home. Suki, Harrow

My mum passed away only a couple of months ago and it was her wish to die in hospital. She was terrified of dying at home for many reasons. I have to say that the hospital was superb and cared for her wonderfully and I can also say she died feeling safe. Whilst many people do wish to die at home, it should be realised that many people feel safer in a medical situation, where there are nurses and doctors around to make them comfortable. Rob, Lancashire

My mother was able to die at home but only because of my persistence. She had a major stroke on 18 June and was in hospital for four days. She had signed a "Living Will" five years before and we knew her wishes, so she was not being artificially fed but just kept comfortable. When she indicated her wish to go home, the hospital made it appear an impossibility. Luckily I have friends in the NHS and was able to take their advice and through the "Fast Track for the terminally ill" was able to get her home within 24 hours. She had 36 hours in her own bedroom before dying. Jinny, Wales

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Saturday 2 October 2010

Vulnerable elderly 'forced to pay for medical care'

Vulnerable elderly 'forced to pay for medical care'

Elderly woman Patients can apply for NHS funding through the continuing care system

Vulnerable elderly people are being unfairly forced to pay for health care, the new chairman of the House of Commons health committee says.

Stephen Dorrell said patients with conditions such as dementia used to get free care in NHS geriatric hospitals.

But the number of places has fallen by nearly 80% in the UK over the past 20 years - despite the ageing population.

He said this had pushed people into the means-tested social care system where they were often charged for treatment.

In an interview with the BBC, he said the redrawing of the boundaries had been allowed to creep in without proper debate or scrutiny and urged politicians to face up to the issue.

An expert commission has already been set up by the government to look into the issue of social care funding in England.

But Mr Dorrell was speaking about a specific group of patients whom he believes the NHS has turned its back on.

Ignored

As well as dementia patients this includes people such as stroke victims and those with Parkinson's disease who struggle to get the NHS to pay for medical treatment they receive.

Mr Dorrell, who was health secretary towards the end of John Major's time as prime minister, said: "People are being charged for care that they would have got free from the NHS 20 or 30 years ago.

"In effect there has been a change in the definition of what constitutes NHS care and that has happened without proper debate.

"Unfortunately, it has been ignored because both politically and financially it is tricky for politicians to face up to it. But because it has not been done in a planned way there is great unfairness in the system. We see examples of cost shunting and bureaucracy that cause individuals problems.

"I would not want to see a return to the old system of geriatric hospitals - care is much better now - but you have to question whether it is fair that this group of people are being charged in this way?"

Evidence on the changes to the nursing care home and geriatric hospital sectors lend support to his view.

Case study

Mair Schwodler's family spent years fighting to get the NHS to pay for the care she needs - but to no avail.

The 84-year-old, who has Alzheimer's disease, has been immobile and incontinent since 2006.

She gets round-the-clock care in a £700-a-week nursing home in Bedford.

But despite her medical condition her family have been forced to sell her home to help pay for the specialist care she needs.

They say the pressure of her situation contributed to her husband, Bob, killing himself.

Mrs Schwodler's son-in-law Douglas Clegg, 68, says: "They worked hard all their lives and not to have health care paid for when the NHS is meant to be free is unbelievable."

Figures from analysts Laing and Buisson show that the number of geriatric beds fell from more than 80,000 in 1988 to 16,300 last year.

During the same period nursing home places more than doubled from 78,300 to 179,400. On top of that there are now nearly 300,000 residential care places, although these are less likely to have patients with severe medical conditions.

NHS funding is available to people with the most severe medical needs who are in care homes or living independently under a system called continuing care.

But campaigners claim the funding is too bureaucratic and difficult to qualify for. Little over 50,000 people currently get it.

Age UK policy adviser Stephen Lowe agreed Mr Dorrell was right to highlight the issue, saying the NHS had "unilaterally retreated" from its responsibilities.

Ruth Sutherland, interim chief executive of the Alzheimer's Society, added: "There are hundreds of thousands of people missing out on valuable financial help because they don't 'tick the right boxes'.

"People with dementia are some of the hardest hit by this deliberately tricky system. They have complex physical health needs which should often be covered by the NHS but arguments over funding see them denied this care.

"Instead they are forced to pay for social care which adds huge financial burden to people already under emotional and physical strain. Faced with exhaustion, they may not have the strength to challenge being turned down."

A Department of Health spokeswoman acknowledged there had been problems with people accessing NHS funding, but said the situation was now improving following new guidance to NHS trusts.

She added that recent data showed there had been an overall increase in the numbers of people getting continuing care funding.

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Wednesday 1 September 2010

If I'd proposed solving the pension problem by compulsory euthanasia for every fifth pensioner I'd have got less trouble for it

Blair's memoirs: Key quotes

Tony Blair's memoirs have been published. We will be updating this page showing some of the key quotations from the book. ELECTION NIGHT 1997

This was not a win. It was a landslide. After about two hours for a time I actually became worried. The moving line at the bottom of the TV screen was showing over a hundred Labour seats. The Tories had just six. I began to think I had done something unconstitutional.

IN POWER

On 2 May 1997, I walked into Downing Street as PM for the first time. I had never held office, not even as the most junior of junior ministers. It was my first and only job in government.

DEATH OF DIANA, PRINCESS OF WALES

Through it all, we were trying to work out how it should be managed. I know this sounds callous. I was genuinely in grief. I liked her and I felt desperately sorry for her two boys, but I also knew that this was going to be a major national, in fact global event like no other. How Britain emerged was important for the country internally and externally. I was prime minister; I had to work out how it would work out. I had to articulate what would be a tidal wave of grief and loss, in a way that was dignified but also expressed the emotion and love - not too strong a word - people felt for her.

PRIME MINISTER'S QUESTIONS

If I did seem to be enjoying it, then it was a supreme instance of acting. I hated it.

9/11 ATTACKS

At that moment, I felt eerily calm despite being naturally horrified at the devastation, and aware this was not an ordinary event but a world-changing one. It was not America alone who was the target, but all of us who shared the same values. We had to stand together.

GEORGE W BUSH

I had come to like and admire George. I was asked recently which of the political leaders I had met had the most integrity. I listed George near the top. Some people were aghast... thinking I was joking. He had genuine integrity and as much political courage as any leader I ever met. He was, in a bizarre sense... a true idealist.

IRAQ - BEREAVED FAMILIES

Do they really suppose I don't care, don't feel, don't regret with every fibre of my being the loss of those who died? To be indifferent to that would be inhuman, emotionally warped.

DEATH OF DR DAVID KELLY

I will never know precisely what made Dr David Kelly take his own life. Who can ever know the reason behind these things? It was so sad, unnecessary and terrible.

ON WIFE CHERIE

She was a rock to me, strong when I was weak, determined when I was tempted to falter, and fierce in her defence of the family.

ON DRINKING

By the standards of days gone by I was not even remotely a toper, and I couldn't do lunchtime drinking except on Christmas Day, but if you took the thing everyone always lies about - units per week - I was definitely at the outer limit. Stiff whisky or G&T before dinner, couple of glasses of wine or even half a bottle with it. So not excessively excessive. I had a limit. But I was aware that it had become a prop.

ROWS WITH GORDON BROWN

I'm afraid I stopped taking his calls. Poor Jon [an adviser] would come in and say: "The chancellor really wants to speak to you." I would say: "I am really busy, Jon." And he would say: "He is really demanding it." Then I would say: 'I'll call him soon." And Jon would say: "Do you really mean that, prime minister?" And I would say: "No, Jon."

ON GORDON BROWN'S FOLLOWERS

The curse of Gordon was to make these people co-conspirators, not free-range thinkers. He and Ed Balls and others were like I had been back in the 1980s, until slowly the scales fell from my eyes and I realised it was more like a cult than a kirk.

THE FINANCIAL CRISIS

I profoundly disagree with important parts of the statist, so-called Keynesian response to the economic crisis; I believe we should be projecting strength and determination abroad, not weakness or uncertainty.

DAVID CAMERON

David Cameron was clever and people-friendly but he had not gone through the arduous but ultimately highly educative apprenticeship I had gone through in the 1980s and early 90s.

ED BALLS

I've had some harsh things to say about Ed Balls - I thought he behaved badly at points, and was wrong on policy - but I also thought he was really able, and a talent that any political party should be grateful to have.

FOX HUNTING BAN

If I'd proposed solving the pension problem by compulsory euthanasia for every fifth pensioner I'd have got less trouble for it.

IAN PAISLEY AND NORTHERN IRELAND PEACE DEAL

Once, near the end, he asked me whether I thought God wanted him to make the deal that would seal the peace process. I wanted to say yes, but I hesitated; though I was sure God would want peace, God is not a negotiator.

Sunday 14 March 2010

Social care under-funded and rationed, say MPs

Social care under-funded and rationed, say MPs

By Nick Triggle
Health reporter, BBC News

Elderly man
Care funding is currently means-tested

Adult social care in England is "chronically under-funded" and "severely rationed", MPs say.

The Health Committee warned urgent action was needed and told the political parties to stop their point-scoring and seek solutions instead.

The cross-party group said if politicians failed they would "betray current and future generations".

Ministers are expected to set out their plans for reform of the £16bn system in the coming weeks.

ANALYSIS
The challenge facing social care is the perennial problem of supply and demand. While the NHS budget doubled in real terms over the last decade, social care funding rose by little more than 50%.

It has created a situation where councils have responded to more and more requests for help by restricting access to services, leaving vulnerable people to decide between struggling along on their own or selling their homes to pay for residential care.

In truth, the social care system was only ever created as a safety net. The expectation was that a large proportion of caring would be done by relatives and friends, but with community and family life now very different from the 1940s that has become less likely.

Politicians have responded by calling for a "partnership" between the state and individuals. That, of course, requires people to dip into their own pockets, creating an explosive issue in the run up to the election.

Social care, which includes support provided by councils to people in their own homes for things such as washing, eating and dressing as well as residential home placements, is now at the top of the political agenda.

Last summer the government put forward three options for change - one of which involved charging people a compulsory levy of up to £20,000, which has been dubbed a death tax by the Tories.

In recent weeks, the row has escalated with the parties launching attacks on each others' policies.

Two summits have been held in the last month alone, but still no consensus has been reached.

But the committee said it was essential agreement was brokered early in the next parliament so as not to "betray current and future generations".

The report said reform was long-overdue, pointing out it is 13 years since Tony Blair announced changes would be made.

In that time, councils have been placing more and more restrictions on who can get access to care.

Three quarters of the 152 local authorities with responsibility for care now only provide services to those with the highest needs.

Costs

What is more, the means-tested threshold, which stipulates that anyone with assets of more than £23,000 has to pay for their care, was unrealistic, the MPs suggested.

They point out that the actual cost of care on average, certainly of care homes, was much higher.

And without reform, the situation is only going to get worse because of the ageing population, the MPs said.

WHERE THE PARTIES STAND
Labour - Put forward three proposals - all of which involve the state providing a basic level of care which would be topped up by either personal contributions, a voluntary insurance scheme or compulsory levy. The third option - dubbed a death tax - is said to be favoured by ministers
Tories - Proposed an £8,000 voluntary insurance model to cover residential care costs. Now drawing up plans for a voluntary scheme to cover domestic care, such as help washing, eating and dressing in the home
Lib Dems - Initially supportive of free personal care - like Scotland has introduced - but now want a "partnership" whereby state pays some and individual tops this up. Open to compulsory levy

Q&A: Social care

However, they pointed out that the baby-boomer generation will not hit their mid 80s until the early 2030s, creating what they claimed was a "window of opportunity" to improve the system.

Committee chairman Kevin Barron added: "We don't want this issue to be turned into an election football for it to be kicked back into the long grass again in a few weeks."

And as an interim measure, while the system is being reformed, he said the £23,000 threshold should be raised so that more people could get access to care.

Mr Barron also said general taxation should not be ruled out as a way of funding social care - all the options being considered at the moment involve some state funding, coupled with individual contributions.

Stephen Burke, of Counsel and Care, a charity for older people, said: "This sets out in clear terms why we need reform. The three parties now need to meet the challenge."

Care services minister Phil Hope said a white paper setting out how the system should be changed and funded in the future would be published soon.

He added: "Fixing our system of care for people who are older and disabled is our very highest public service priority."

Monday 8 March 2010

Carer respite funding 'spent elsewhere'

Carer respite funding 'spent elsewhere' say charities

Hands touching
Millions of pounds was allocated to offer respite to carers

Millions of pounds intended to fund respite breaks for voluntary carers in England has been spent on other areas of the NHS, according to two charities.

The government announced in 2008 that it was doubling money set aside to allow long-term carers some time off - £50m this year and £100m next year.

The Crossroads Care and Princess Royal Trust for Carers say only 23% of this year's cash is being spent on carers.

NHS Trust representatives say money was moved to best meet local needs.

The two charities say the problem is that the money was never ring-fenced by the government and simply added to existing health budgets.

Some trusts have no idea how much money they received towards respite breaks, the charities claim.

'Different priorities'

Gordon Conochie, of the Princess Royal Trust for Carers, accused primary care trusts of failing to respond to local needs because of a lack of "transparency and accountability".

"Primary care trusts aren't telling local people what they're using the money for, they're not actually consulting with carers' organisations or carers locally," he said.

"And in our report we found a quarter of them hadn't even spoken to a local authority about actually publishing a joint plan with them."

The charities based their analysis on responses to Freedom of Information requests from 100 primary care trusts.

David Stout, director of the Primary Care Trust Network, said trusts had planned to meet carers' needs but were also faced with "many, many different priorities".

"So inevitably there's a need to meet needs as best you can in your local area."

Tuesday 22 December 2009

Staff at the Recovery and Rehabilitation Centre in Carpenis

A BBC investigation has uncovered appalling conditions and abuse in adult institutions in Romania, 20 years after the fall of Nicolai Ceausescu exposed conditions in the country's orphanages.

As the care worker unlocked the door and pushed it open, a musty stench of body odour and urine filled the air. There were 10 people crammed into the room, bed-bound on rotting mattresses and lying in their own faeces, some two to a bed.

Among the dirty, scarred faces peering above the duvets were the orphans whose plight roused the international community when Romanian orphanages opened their doors to Western journalists in 1990.

Staff at the Recovery and Rehabilitation Centre in Carpenis had no idea how old the latest arrivals from a children's orphanage were - they guessed 18 but they looked much younger.

The three boys cowered under their dirty duvets, escaping from the wrinkled faces of the disturbed men and women they shared a bed with.

Archive picture of Romanian orphanage: February 1990
The overthrow of Ceausescu shone a light on the plight of the orphans

One of the boys was desperately thin. A worker explained that they didn't know anything about him. He couldn't talk and they suspected he has hepatitis, but they had no means of finding out for sure.

Another new arrival had deep cuts to her head. Like others who have been institutionalised since birth, she exhibits self-harming behaviour, including violent rocking backwards and forwards. She repeatedly banged her head against the wall, and wore a makeshift helmet to cushion the impact.

Notorious institutions

There were dozens of rooms, packed with 160 adults aged up to 80. It was difficult to tell the men and women apart, but they all shared a confined existence. They are all unwanted human beings, abandoned by their impoverished parents at birth and neglected into adulthood by the state.

Georgiana Pascu
We came across several institutions where there were cases of human rights abuses
Georgiana Pascu, Romanian human rights campaigner

The Romanian government had promised it had dealt with its notorious institutions as part of its conditions for joining the European Union. The only way we could witness the reality of conditions in adult institutions was to pose as charity workers, and secretly film our findings.

The Carpenis institution is just 32km (20 miles) from the capital Bucharest, the heartbeat of the country's growing economy. In the main squares, neon lights advertise the biggest Western brands; shopping centres are bursting with families spending new money on Christmas gifts. It is a measure of how far Romania has come since the fall of its dictator Nicolai Ceausescu who bankrupted the country. But not everyone has seen change in the last 20 years.

In Bolintin, another village close to the capital, a lone nurse and six helpers take care of more than 100 patients - they are not sure exactly how many. They were wrapped in blankets and thermal jackets to escape the freezing cold.

Picture from secret filming at one of the institutions
Signs of gangrene were evident at one institution in Bolintin

In a wooden cabin, separate from the main building, we found 15 severely disabled people slumped on uncomfortable chairs. The nurse insisted they were at least 20 years old, but their tiny faces and bodies suggested they were much younger.

Unlike the able-bodied in the main building, they had nothing to escape the cold. Their clothes were thin and tatty and their bare feet produced an odour of rotting flesh. A closer look revealed signs of gangrene.

Low standards

Georgiana Pascu of the Romanian human rights group the Centre for Legal Resources has visited nearly every one of Romania's 150 adult institutions. She says adults in state care face a long list of problems.

Nicolai Ceausescu's government collapsed 20 years ago
Nicolai Ceausescu was executed with his wife Elena on Christmas Day 1989

"There is overcrowding, lack of access to adequate medical treatment, lack of access to psychologists and social workers. We came across several institutions where there were cases of human rights abuses during our visits this year. With a little help, most of them could live in a community environment."

But that help has never come. Again, posing as charity workers, we witnessed some pitiful scenes at the Ganesti Social Medical Unit in eastern Romania.

Staff there told us that there was one carer to 40 residents, and that there were 160 people sharing 140 beds.

Most staff at the institutions we visited were caring and compassionate, but with ratios like this it is little wonder that standards are so low. It was mid-afternoon, and we found most patients still in bed, many showing signs of heavy sedation.

One girl was restrained in her bed by her jumper which acted as a straitjacket.

Human rights activist Eric Rosenthal gives his views on the BBC's secret footage

We showed the findings of our investigation to Eric Rosenthal, who campaigns to protect the human rights of institutionalised people and is an adviser to the US government.

"I cannot say I'm surprised given Romania's record, but I am horrified," he said. "My organisation Mental Disability Rights International documented this abuse in great detail. We talked to government officials, and we brought it to the European Union. They promised they would end these abuses and they have failed on that promise.

"These conditions are exactly what we saw five years ago, 10 years ago. They did what they needed to do to get into the EU, but the abuses are still going on."

Well-cared for

Some institutions, however, have been turned around. The orphanage in Cighid, north-west Romania, was one of the institutions that achieved notoriety in 1990.

A young man who has spent almost all his life in institutions
A young man from the orphanage in Cighid, an institution that has been turned around

At least 137 children died in the space of two years, most of them no older than three.

Foreign aid and the efforts of a new director, Dr Pavel Oarcea, who has now retired, led to many improvements.

Cighid - now an adult institution - was the only facility we got permission to visit as journalists. Around 60 of the children have remained there into adulthood, and they appeared well-cared for.

They had musical instruments, crayons and colouring books. But many have only ever known life in an institution. The disabilities they were either born with or developed as a result of previous neglect in the orphanage meant they were always unlikely to be adopted.

Dr Oarcea defied orders by the local authority not to speak to us. He told us the 15 years he spent in Cighid were the most rewarding of his life, but that he still has regrets.

"A disabled child who's lived with a family his whole life doesn't rock backwards and forwards. What the Cighid children have missed out on is family life, the love that only a family can give," he said.

"Twenty years ago I believed the Romanian government would have made much greater progress in protecting their unwanted children and adults."

Since 1990, Romania has received 100m euros (£89m, $144m) from the EU to improve its institutions.

In response to our investigation, the Romanian government said the conditions we found were not representative of care in the country.

"The Romanian authorities continue the reform and the protection of the disabled with social risk by implementing proactive policies and good practices," it said in a statement.

It added that two of the institutions we visited were scheduled for closure in the next three years.

Friday 4 December 2009

Continuing care 'lottery' in NHS

Continuing care 'lottery' in NHS
Elderly person
Access to care varies widely around the country
Huge variations in access to continuing care on the NHS are "unjustifiable", a leading charity has warned.

Age Concern said government figures showed people in some areas of England are 160 times more likely to get continuing care than others.

The postcode lottery faced by those needing care was due to differences in local criteria for who was eligible.

But a national framework to be launched in October should increase access for thousands, the government said.

Continuing health care - where the NHS is responsible for, and fully funds care outside of hospital when a person no longer needs acute inpatient care - mainly affects very ill patients in nursing homes.

There can be no justification for such huge variations in access to care
Gordon Lishman, Age Concern

It is hoped the framework, unveiled in June, will standardise decisions on who is eligible, making the process faster, fairer and more simple to understand.

Age Concern welcomed the measures, which they estimated would increase the numbers of people receiving continuing care by about 7,000 - at a cost of £220 million.

But they warned around 60,000 people would still be missing out on the continuing care they are legally entitled to.

And they stressed that the framework would not cover social or personal care, which includes help with washing, feeding and dressing.

Care lottery

Figures obtained by the charity from the Department of Health show that the number of people receiving continuing care vary dramatically around the country.

In March this year Derby City PCT was giving just seven people continuing care, a rate of 0.26 people per 10,000.

By comparison, Harrow PCT was giving 826 people continuing care - a rate of 41.75 per 10,000 people.

This is despite Harrow having 75,000 fewer people and a younger population.

Gordon Lishman, director general of Age Concern, said they were fearful that the new framework alone would not result in the cultural change in PCTs needed to reduce the variation.

"These new figures beggar belief.

"Individuals face a postcode lottery in getting NHS continuing care.

"There can be no justification for such huge variations in access to care."

He said the framework needed to be monitored carefully to assess its impact in stamping out the "unfair practice".

Care services Minister, Ivan Lewis said: "We are aware of the variation which is exactly why we published the National Framework for NHS Continuing Healthcare only two weeks ago.

"The new framework will help ensure that all the people who are eligible for NHS Continuing Healthcare or NHS-funded nursing care will receive the care they need."

He added they would be monitoring the situation closely to make sure that individuals are not missing out.

Andrew Chidgey, head of policy and campaigns at the Alzheimer's Society said: "Many people with dementia struggle to get NHS continuing care funding because the system is confusing, complicated and unfair.

"It is vital that we establish a more transparent and equitable system, which provides the best possible care for people with dementia, and hope this will become a reality in the near future."

'Giving up memories' to pay for care

'Giving up memories' to pay for care

Elderly woman's hands doing cross word
In England assets of £23,500 or more rule people out of state funding

As ministers prepare to lay out proposed reforms to the funding of social care, one elderly woman spoke to BBC Radio 4's Today programme about her concerns for funding her care in a nursing home in the future.

Katherine Dyton is a new resident at a nursing home for the elderly in Surrey.

Mrs Dyton is happy at the home - at 93 she is unable to live alone and needs help with every aspect of daily life - but finding the money to pay for it is a constant worry.

But she also says she has no choice, she simply could not live without 24-hour care.

She told BBC Radio 4's Today programme: "If I need to go to the loo, somebody has to take me and to help me into a chair and help me out again. So I'm quite reliant on other people for everything.


I was sad because you give up all your home and your memories and your possessions

Katherine Dyton

"I can't get into bed and out without somebody lifting my legs out and so-on."

Under the present system in England anyone with a home or savings of £23,500 or more is not given state funding for a care home.

Mrs Dyton says the only way to pay for the home and nursing care was to sell her flat, a decision she found very painful.

"I was sad because you give up all your home and your memories and your possessions. When you've had somewhere all your life it's a great wrench to leave it all.

"I couldn't cope and that was it, you just have to face up to it when the time comes."

But her daughter, Carol, is less stoical.

She bristles at the system that prevented her mother from getting any financial help with the care home's fees, all because she owned a flat. They had no choice but to sell it quickly.

Carol told BBC Radio 4: "This was a time when the market was depressed and we weren't going to get a very good price for it.

"I still thought I would have some time in hand and get some help at first, but no way, we had to pay the bills right from the start.

High cost of care

"For the first month's bill we had to use her savings and things were very tough, it took some months to actually sell the flat."

But even with the proceeds from her mother's flat, she is still worried she will not be able to continue paying the care home bills. They come to £1,100-a-week.

"This is the problem, she is in a very good Bupa home and we are very happy with it.

"But it is expensive because she does need nursing care and nursing care is significantly more than residential.

"The money will run out in less than four years and we will be faced with what to do then.

"That is what I think is very unfair because I do believe there should be much more choice.

"Intrinsically I'm not saying that you don't make any contribution towards your care - I think that if you have some assets then they should have to be looked at.

"But to be totally responsible, 100%, for the whole amount, knowing that it will run out, is just unfair on people."

And if it is difficult to make ends meet now, what does she see ahead for her own future?

"I think it will be absolutely impossible, because we are talking now at £1,100-a-week, this will go up.

"I don't think there will be the number of homes; I don't think it will be a viable proposition for people to run these sorts of homes.

"So frankly you can't afford to get ill, you can't afford to be immobile, you're going to have to keep going, otherwise it's going to be the good old bus trip to Switzerland."

Adult social care warning for eight areas of England

Adult social care warning for eight areas of England

Campaigner Pamela Wells: "The care staff actually didn't care"

Eight local authorities in England have been told they must urgently improve their social care services for adults.

The Care Quality Commission found overall improvement, with 95% of councils in the top two categories.

But its annual report rated one in four care homes for the elderly as being adequate at best and found large variations in areas and providers.

Poole, Cornwall, Solihull, Surrey, South Tyneside, Southwark, Peterborough and Bromley are to get extra support.

But Annie Shepperd, a chief executive of one of those councils, Southwark, said the Care Quality Commission (CQC) had made a mistake in rating her authority.

COUNCIL CARE SERVICES 2009
To find out more Care Quality Commission information on social care services for adults in England, select a council here:
This search goes to an external site

She said the CQC had judged them to be a low spending authority but the other regulator, the Audit Commission, had said they were a top quartile spending authority, "they can't both be right".

"Why have they refused to come and talk to me about this and why have they not given me the evidence when I've got mountains of contrary evidence that their findings are wrong."

The report covers independent providers of care services as well as an assessment of England's 148 local authorities.

It rated 95% of councils in the top two categories, which means they are performing well or excellently - and none was given the bottom "poor" rating.

'Raise the bar'

While the picture is of improvement, the commission said there are still too many vulnerable adults being failed by the system.

CARE QUALITY COMMISSION

The Care Quality Commission is the official regulator for health, social care and mental health

It only came into being in April 2009, bringing together the functions of three regulators - the Healthcare Commission, Commission for Social Care Inspection and Mental Health Act Commission

It is in charge of inspecting, rating and assessing NHS trusts, councils, private companies and charities involved in health and social care provision

Under new powers being phased in, it has the power to fine and close services that are failing and is demanding providers meet certain standards before they can even register with the regulator

And experts have suggested the top grades were achieved only because councils were providing care to fewer people.

More than 340,000 people in England receive care in their own home - a figure which has fallen by a fifth in the past eight years.

To cope with the demands they face, councils have been restricting who is eligible for free or subsidised care - social services is means-tested so that people with significant savings are excluded anyway.

The figures from the regulator showed seven in 10 councils only provide care to those with substantial needs - basically those who cannot do everyday tasks, such as washing, dressing and eating, without help.

It means there are thousands of people with so-called low or moderate needs who have been excluded from state support they would normally have been entitled to.

Despite the high ratings given to councils, the regulator recognised the problem.

It said it would be looking to "raise the bar" in the future and would pay particular attention to eligibility.

RATINGS ON THE RISE
95% of councils got an excellent or performing well grade - up from 87% last year
None got a poor rating - the fourth year in a row this has happened
Eight councils given an adequate grading were earmarked as a priority for improvement
More than three-quarters of private and voluntary sector providers also got an excellent or performing well grade
But one in six of the 24,000 providers were told they must improve
Care homes for the elderly were highlighted for their poor record of providing social contact and activities for residents

Social care - the next big issue?
Your comments on social care

The CQC also urged councils to do more to drive up standards in the voluntary and private sector.

From next year, changes to the ratings system will give more weight to the views of those using care services and fines will be able to be levied against providers the regulator considers are not providing a good enough service.

Most care homes and an increasingly significant amount of home care is delivered by 24,000 alternative providers.

Ratings for those showed one in six were ranked as poor or adequate - and the CQC warned they were risking fines or deregistration next year when the new system comes in place.

Care homes for older people were highlighted in particular for their poor record on providing social contact and activities for residents.

Councils purchase about half of the services provided by these groups and the CQC said they should look to focus their spending on only the best providers where possible.

CQC chief executive Cynthia Bower said the improvements in council services should be recognised, although they could still do much better on issues such as dignity and offering people more choice.

'Dignified lives'

Eligibility for care graphic

But she also warned she was "deeply concerned" the expected squeeze on public sector spending could lead to greater restrictions on access.

"We all know there are choppy waters ahead so the issue is how well the system responds to the situation.

"We plan to be particularly vigilant about this on behalf of people who use services."

Andrew Harrop, head of public policy for the newly-merged Age Concern and Help the Aged charity, said some care homes were clearly still "not up to scratch".

And on tightening eligibility criteria, he added: "Local councils continue to deny many older people the care they need to live dignified and independent lives."

But Councillor David Rogers, of the Local Government Association, said: "Councils deserve great credit for their continued good work."

Bromley cited pressures "in managing significant increases in demand for social care services".

Solihull Council said it was "utterly committed" to working to improve services, while a spokesperson for South Tyneside Council said: "We welcome this support to help us move forward with our modernisation of adult social care."

Monday 30 November 2009

Doctors 'rely on chemo too much'

Patient having chemotherapy
Some 80,000 patients undergo chemotherapy each year

Doctors are being urged to re-think their approach to giving chemotherapy during care at the end of life.

A review of 600 cancer patients who died within 30 days of treatment found that in more than a quarter of cases it actually hastened or caused death.

The report by the National Confidential Enquiry into Patient Outcome and Death said doctors should consider reducing doses or not using chemotherapy at all.

England's cancer tsar Professor Mike Richards said he was "very concerned".

The group of patients the independent group was looking at represents 2% of the 80,000 people who receive chemotherapy each year.

This report provides very disturbing information about the safety of treatment for incurable cancer
Professor Jane Maher, of Macmillan Cancer Support

They were all severely-ill patients for which the chemotherapy was mostly being used to manage their condition rather than in an attempt to cure the cancer.

After examining case notes, the group said that 35% of patients received good care.

But it found that in 27% of cases it hastened or caused death - the toxic nature of the treatment can lead to a range of problems, the most serious of which is an infection called neutropenic sepsis.

Report co-author Dr Diana Mort said doctors should be more "cautious in prescribing chemotherapy for very sick patients".

And she added: "The process of consent may require more than one discussion.

"Patients must be made aware of the risks and side-effect of chemotherapy as well as the potential benefits."

Transfer arrangements

The report also criticised the facilities made available to patients with nearly half being admitted to general medicine wards during the last 30 days of life rather than a specialist cancer unit.

The authors recommended where hospitals did not have specialist units they should put in place transfer arrangements to centres that did.

Professor Jane Maher, chief medical officer at Macmillan Cancer Support, said: "This report provides very disturbing information about the safety of treatment for incurable cancer.

"It shows that doctors and nurses need to be much better at helping patients understand the pros and cons of such powerful treatments in the last year of life."

Professor Richards said he was "very concerned".

"I am asking all chemotherapy service providers to consider these reports urgently and to reassess their own services immediately against the measures we have set nationally."

But Dr Peter Clark, of the Royal College of Physicians, said while lessons could be learnt it was important to remember that chemotherapy carried "substantial short and long-term benefit" for the majority who undergo the treatment.

Friday 27 November 2009

Can we trust the data on hospitals?

By Emma Wilkinson
Health reporter, BBC News

Cleaning in a hospital
Inspections focus heavily on cleaning

The details of what was uncovered during an inspection in October at Basildon NHS Trust in Essex are shocking.

Floors, curtains and equipment stained with blood; soiled and stained mattresses; and re-use of tubes and other items designed to be thrown away after each patient.

It is the second time in less than a year that standards at a foundation trust - a status awarded to strongly performing NHS institutions - have been found wanting.

"Appalling" standards at Mid-Staffordshire NHS Foundation Trust were exposed in March when it was estimated that 400 patients had died needlessly over a three-year period.

The pattern is remarkably similar - an investigation initially prompted by data showing higher than expected death rates - and will further shake public confidence in how hospitals are monitored.

Especially as league tables published by the Care Quality Commission just last month gave Basildon an overall "Good" rating for quality of services.

It immediately poses the question, can the ratings be trusted and what does that mean for patient choice?

Regulation

The Care Quality Commission is a fairly new body having taking over the responsibility for the monitoring of hospitals from its predecessor the Healthcare Commission eight months ago.

"We need a much more sophisticated system that doesn't just rely on data but takes information from real inspections on the ground
Baroness Young
Care Quality Commission

CQC chair Baroness Young says that they inherited a rating system that is not fit for purpose and needs to be scrapped.

"We did make it very clear that this is not the way we want to regulate for the future.

"We need a much more sophisticated system that doesn't just rely on data but takes information from real inspections on the ground."

The "Good" rating given to Basildon hospital relates to an earlier time period - the year up until April 2009 - and there will be variation within each hospital, which makes the "single-word summary" misleading, she adds.

The CQC, she says, will have greater power and resources to carry out spot checks and inspections, rather than just relying on tick-box exercises which some argue enable trusts to fudge the data.

"By this time next year there will be a completely different system which will be much more able to spot issues, nip them in the bud, and take prompt action, rather than reporting months and months later."

Accurate data

The jury seems to be out on whether figures such as death rates are reliable indicators of poor performance - although in these two cases they started the alarm bells ringing.

Data from Basildon NHS trust showed a death rate 36% above the national average for the past three years.

When initially questioned, the trust had said the data was misleading - the same response given by Mid-Staffordshire when asked to account for higher than expected deaths.

Professor Sir Brian Jarman, who has developed systems for monitoring death rates - known as hospital standardised mortality ratios - and other data on a monthly basis, says the whole idea is to adjust for factors, which may affect the figures such as an unusually high elderly population.

He believes the data can be relied upon and that Basildon, along with some other hospitals, had higher than average rates since they started collecting the figures a decade ago but initially people had not taken any notice of the information.

"We now have a very good relationship with the CQC and they do listen closely."

"What we have found in virtually every hospital we have drawn attention to is there are usually dramatic reductions in the figures.

"Even in Basildon - from April this year they are down to normal."

Complaints

But Kieran Mullan, director of policy and public affairs at the Patients Association says death rates are a very "blunt tool" which only highlights problems once they get severe.

He is also critical of CQC plans to change the rating system.

"The bulk of it will still be data driven self-assessment, that's not going to change.

"It will just be a form where the trust can tick, yes we do this and then it's up to chance whether the CQC will choose your hospital to look at more closely.

"They say they will do more going into wards and talking to patients but the framework is basically the same."

A far simpler way to monitor whether hospitals are up to scratch is to pay closer attention to and follow up patient complaints, he says.

Almost every complaint they receive has already been logged with the trust and therefore accessible to the regulator.

"If you treat a complaint seriously we wouldn't need anything else because patients tell you when something has gone wrong."

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