Girl Who Aged Too Quickly Inspired Top Doc’s Quest

June 29th, 2011 by Abby Hitchcock |

Her name was Meg, 23, featherweight and feisty.

Standing 3 feet tall, Meg didn’t look like her peers. Bald and skinny, her body was aging rapidly because she had a rare genetic disease called Hutchinson-Gilford progeria syndrome.

People with progeria wrinkle and develop the same circulation and joint ailments as the elderly — except most of them die by age 13.

Progeria affects 200-250 children worldwide, but research into the disease could offer clues on cellular function and how it affects human aging and other age-related diseases.

This week, a study about a possible treatment was published in Science Translational Medicine. Dr. Full Post…

Palliative care: 100k terminally-ill patients denied proper end-of-life treatment

June 29th, 2011 by Declan Nguyen | Tags: Patients, Terminallyill Patients

End of life: Up to 65 per cent of terminally-ill patients say they would like to die at home but currently only 20 per cent do (model photo)

Nearly 100,000 people are not having their end-of-life care needs met, a funding review for the Government has found.

It also found huge inequalities in the provision of palliative treatment, with one primary care trust spending £186 per patient compared to £6,213 in spent in another.

The postcode lottery also extends to access to services such as round-the-clock nursing care.

Far more people die in hospital than wish to and experts estimate that more than 90,000 people are not having their needs met.

The Palliative Care Funding Review was ordered by Health Secretary Andrew Lansley last summer.

It has proposed a new ‘fair and transparent’ funding system where the money is linked to the individual patient.

It is hope this would cut variation around the country in what the state pays for and what it does not, and support far more people to be cared for in their own homes.

Under the scheme, people would receive an initial assessment of their needs, which would then be combined with other factors such as their age and capabilities.

This ‘needs classification system’ would have 25 separate classes (13 for adults and 12 for children), each with its own pot of funding.

 

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The funding would take account of personal care needs – including help with washing and eating, the provision of 24/7 nursing care to support people at home and a co-ordinator to help patients work out their state entitlements as well as access to local charitable services.

At present, some end-of-life care providers are paid regardless of how much work they do, offering poor value for money across the service, the review said.

The review has recommended a new palliative care tariff.

IT WILL COVER

* A regular assessment of the patient’s needs* All clinically assessed palliative care needs, wherever they are based*A patient coordinator who will guide them through the process* Social care needs at the end of life

IT WON’T COVER

* Care not assessed as clinical need such as complementary therapies* Support for families and carers such as respite* Bereavement care

The review says: ‘These services can continue to be supported by either the state or society as they are now.’

Meanwhile, 97 per cent of hospices do not receive all the funding they need for the NHS services they provide, and some patients are victims of ‘rationing’ towards the end of the NHS financial year.

These latest proposals would guarantee funding regardless of where patients live and whether they are in a care home, hospital or in their own home.

Experts behind the report say the move could reduce deaths in hospital by up to 60,000 a year by 2021, translating into savings of £180m a year.

Thomas Hughes-Hallett, chair of the review and chief executive of Marie Curie Cancer Care, said: ‘No other country in the world has introduced such a system for both adults and children, so the step is both a bold and necessary one.’

Professor Sir Alan Craft, adviser to the review, said: ‘The Government must act on the recommendations contained in the review because evidence shows us that incentivising the provision of palliative care leads to better outcomes for patients, supports choice and is the most cost effective way of using NHS resources.

‘We need to remove the barriers within the current system to enable this to happen.’

Up to 65 per cent of adults would like to die at home but only one in five do so, with 55 per cent dying in hospital.

The ageing population and the increased complexity of needs towards the end of life mean 90,000 more people than at present could be dying in institutions by 2030, the review said.

Ciaran Devane, chief executive of Macmillan Cancer Support, said people wanted a choice over where to die.

‘Twenty-four hour community nursing services are crucial to the delivery of choice and to the realisation of these ambitious recommendations.

‘It will be up to the Government to ensure that these services are standard across the country.

‘We need to see a massive improvement on the 56 per cent of PCTs who currently provide 24-hour community nursing.’

Simon Chapman, director of policy and parliamentary affairs at the National Council for Palliative Care, said: ‘It is vital that the Government acts on the review’s recommendations and creates a fair funding mechanism that will ensure people get high quality end of life care where and when they need it.

‘We only get one chance to get it right for dying people, which is why it must be a priority to ensure everyone who needs it can access palliative care round the clock.’

Susan Munroe, Marie Curie Cancer Care’s director of nursing and patient services, said: ‘Far too many people at the end of their lives are still not getting the care and support they need nor do they know what they are entitled to.

‘We welcome the recommendations of the review as the next big step.

‘We now want to see these recommendations implemented by the Government as a matter of urgency.’

 

Funding ‘liberation’ treatment trials not enough, says Canadian MS patient

June 29th, 2011 by Declan Nguyen | Tags: Says, Says Canadian

 

OTTAWA — An Ottawa man who travelled to Poland more than a year ago for a controversial multiple sclerosis treatment says Wednesday’s announcement that Canada will fund clinical trials of the procedure doesn’t go far enough.

Health Minister Leona Aglukkaq said the government will begin funding the vein-widening procedure developed by Italian neurologist Dr. Paolo Zamboni in clinical trials at the Phase I and Phase II levels. There are four phases in total, and the first two phases involve anywhere from several dozen to several hundred people.

The procedure, also known as liberation therapy, involves opening up blocked veins. Za

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Living with Congestive Heart Failure

June 29th, 2011 by Joseph Tishler | Tags: Congestive Heart, Congestive Heart Failure, Failure, Heart Failure

By James (Tom) Heywood, MD, Scripps Health

What does it mean when the heart fails? While its name might suggest otherwise, congestive heart failure doesn’t mean the heart has stopped working; instead, it fails to effectively pump enough blood to the body’s organs or to fill without an abnormal increase in pressure. Commonly known as CHF, congestive heart failure affects about five million Americans. It is a serious condition that requires ongoing medical care, but with the proper management, most people with CHF can manage the condition and lead otherwise healthy lives.

CHF can take years to develop or can happen overnight with a large heart attack.; it is one of the most common reasons that people age 65 and older need hospital care. It

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A.M. Vitals: White House Halts ‘Mystery Shopper’ Plan

June 28th, 2011 by Abby Hitchcock | Tags: Plan, Shopper’ Plan

No Mystery:

The Obama administration halted plans to have mystery shoppers posing as patients cold-call doctors offices to see how difficult it was to get appointments, the New York Times reports. The White House had said it wanted to measure access to primary-care doctors before the health-care overhaul adds more than 30 million people to the ranks of insured patients. But doctors and politicians had criticized the plan as a wasteful breach of trust.

Nondisclosure: A new study says surgeons who conducted clinical trials to test a Medtronic Inc.

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