March 19th, certified nurses are celebrated. This date was picked because
it’s the birthday of Margretta ‘Gretta’ Madden Styles, who was
an expert in nurse credentialing. Board certified nurses help their
employers stay on top of the changing medical world and bring new
perspectives to old problems.
Association of Managed Care Nurses (AAMCN) has partnered with
Pfizer to give nurses and healthcare professionals access to this
interactive case management resource that provides training modules,
downloadable toolkits, detailed articles and reprints, as well as external
resources that relate with each topic.
and resources cover the following topics:
AAMCN also offers
Study preparatory course for becoming a Certified
Managed Care Nurse (CMCN) or Certified Managed Care Professional
(CMCP for licensed social workers). The course gives you an overview of
care management including the different departments, roles, and government
programs that relate to care management.
Visit the American
Board of Managed Care Nursing's website (www.ABMCN.org) to learn more about the
Cognitive health—the ability to clearly think, learn, and remember—is an important component of brain health. Others include:
motor function—how well you make and control movements
emotional function—how well you interpret and respond to emotions
sensory function—how well you feel and respond to sensations of touch, including pressure, pain, and temperature
This guide focuses on cognitive health and what you
can do to help maintain it. The following steps can help you function
every day and stay independent—and they have been linked to cognitive
Take Care of Your Health
Taking care of your physical health may help your cognitive health. You can:
healthy diet can help reduce the risk of many chronic diseases, such as
heart disease or diabetes. It may also help keep your brain healthy.
In general, a healthy diet consists of fruits and vegetables; whole
grains; lean meats, fish, and poultry; and low–fat or non–fat dairy
products. You should also limit solid fats, sugar, and salt. Be sure to control portion sizes and drink enough water and other fluids.
Researchers are looking at whether a healthy diet can help preserve
cognitive function or reduce the risk of Alzheimer's. For example, there
is some evidence that people who eat a "Mediterranean diet" have a lower risk of developing mild cognitive impairment.
Researchers have developed and are testing another diet, called MIND, a combination of the Mediterranean and DASH (Dietary Approaches to Stop Hypertension) diets. One study suggests that MIND may affect the risk of Alzheimer's disease.
Being physically active—through regular exercise, household chores, or other activities—has many benefits. It can help you:
keep and improve your strength
have more energy
improve your balance
prevent or delay heart disease, diabetes, and other diseases
perk up your mood and reduce depression
Studies link ongoing physical activity with benefits for the brain,
too. In one study, exercise stimulated the human brain's ability to
maintain old network connections and make new ones that are vital to
cognitive health. Other studies have shown that exercise increased the size of a brain structure important to memory and learning, improving spatial memory.
Aerobic exercise, such as brisk walking, is thought to be more
beneficial to cognitive health than non-aerobic stretching and toning
exercise. Studies are ongoing.
recommend that all adults get at least 150 minutes of physical activity
each week. Aim to move about 30 minutes on most days. Walking is a good
start. You can also join programs that teach you to move safely and prevent falls,
which can lead to brain and other injuries. Check with your healthcare
provider if you haven't been active and want to start a vigorous
For more information, see Go4Life®, NIA's exercise and physical activity campaign for older adults.
Keep Your Mind Active
Being intellectually engaged may benefit the brain. People who engage
in meaningful activities, like volunteering or hobbies, say they feel
happier and healthier. Learning new skills may improve your thinking
ability, too. For example, one study
found that older adults who learned quilting or digital photography had
more memory improvement than those who only socialized or did less
cognitively demanding activities.
Lots of activities can keep your mind active. For example, read books
and magazines. Play games. Take or teach a class. Learn a new skill or
hobby. Work or volunteer. These types of mentally stimulating activities have not been proven to prevent serious cognitive impairment or Alzheimer's disease, but they can be fun!
Scientists think that such activities may protect the brain by
establishing "cognitive reserve." They may help the brain become more
adaptable in some mental functions, so it can compensate for age–related
brain changes and health conditions that affect the brain.
Formal cognitive training also seems to have benefits. In
the Advanced Cognitive Training for Independent and Vital
Elderly (ACTIVE) trial, healthy adults 65 and older participated in 10
sessions of memory training, reasoning training, or processing–speed
training. The sessions improved participants' mental skills in the area
in which they were trained. Most of these improvements persisted 10 years after the training was completed.
Be wary of claims that playing certain computer and online games can
improve your memory and other types of thinking. Evidence to back up
such claims is evolving. NIA and others are supporting research to
determine if different types of cognitive training have lasting effects.
For more information, see Participating in Activities You Enjoy: More Than Just Fun and Games.
with other people through social activities and community programs can
keep your brain active and help you feel less isolated and more engaged
with the world around you. Participating in social activities may lower
the risk for some health problems and improve well–being.
So, visit with family and friends. Join programs through your Area
Agency on Aging, senior center, or other community organizations.
We don't know for sure yet if any of these actions can prevent or delay Alzheimer's disease
and age–related cognitive decline. But some of them have been
associated with reduced risk of cognitive impairment and dementia.
Food safety is important for everyone – but it’s especially important
for those with cancer. That’s why the U.S. Department of Agriculture’s Food Safety and
Inspection Service and the U.S. Department of Health and Human
Services’ Food and Drug Administration have prepared a booklet of recommendations. It is
designed to provide practical guidance on how to reduce your risk of
foodborne illness. In addition to this guide, we encourage you to check
with your physician or health care provider to identify foods and other
products that you should avoid. Click the link below to view the booklet PDF.1 http://www.fda.gov/downloads/Food/FoodborneIllnessContaminants/UCM312761.pdf
"Anorexia, cachexia and tumors are common causes of malnutrition in cancer patients.
Anorexia (the loss of appetite or desire to eat) is
a common symptom in people with cancer. Anorexia may occur early in the
disease or later, when the tumor grows and spreads. Some patients may
have anorexia when they are diagnosed with cancer. Almost all patients
who have widespread cancer will develop anorexia. Anorexia is the most
common cause of malnutrition in cancer patients.
Cachexia is a wasting syndrome that causes weakness
and a loss of weight, fat and muscle. Anorexia and cachexia often occur
together. Cachexia can occur in people who are eating enough, but who
cannot absorb the nutrients. Cachexia is not related to the tumor size,
type, or extent. Cancer cachexia is not the same as starvation. A
healthy person's body can adjust to starvation by slowing down its use
of nutrients, but in cancer patients, the body does not make this
Tumors may produce chemicals that change the way
the body uses certain nutrients. The body's use of protein,
carbohydrates, and fat may be affected, especially by tumors of the
stomach or intestines. A patient may appear to be eating enough, but the
body may not be able to absorb all the nutrients from the food. Diets
higher in protein and calories can help correct this and prevent the
onset of cachexia. It is important to monitor nutrition early, as
cachexia is difficult to completely reverse."2
References: 1. U.S. Department of Health and Human Services. US Food and Drug Administration. Food Safety for People with Cancer. http://www.fda.gov/Food/FoodborneIllnessContaminants/PeopleAtRisk/ucm312565.htm. Accessed Feb 16, 2017. 2. Mount Sinai Medical Center. Nutrition in Cancer Care. https://www.msccc.com/cancer-resources/nutrition-in-cancer-care. Accessed Feb 16, 2017.
When Tal Golesworthy was told he
was at risk of his aorta bursting, he wasn’t impressed with the surgery
on offer – so he came up with his own idea. By Geoff Watts.
Lunchtime at a small medical engineering company in
Tewkesbury. The entertainment thoughtfully laid on to garnish our
sandwiches is a colourful video: a neat bit of cardiovascular surgery
featuring someone’s heart and blood vessels.
Someone? Well, not quite anyone. The exposed and beating heart at
which we’re gazing belongs to one of my dining companions. Tal
Golesworthy, 60, is balding, quick-talking and often outspoken. He’s
also – a clue here – tall, with unusually long fingers.
Getting on for 15 years ago Golesworthy learned that unless he was
prepared to undergo major surgery on one of the vessels carrying blood
away from his heart, he faced an increasing risk of premature death. He
didn’t relish the prospect of an operation; but even more upsetting was
the knowledge of what this particular procedure would involve.
Golesworthy is neither a doctor nor any kind of medical researcher.
He’s an engineer. But with characteristic self-belief he reckoned he
could devise a simpler and safer way of fixing his problem. And he did.
He then persuaded a surgeon to take him seriously, became the guinea pig
for the first operation, and now runs a company set up to manufacture
implants like the one buried in his own chest. It’s been there for a
decade, and it’s keeping him alive.
Golesworthy’s experience is notable for his persistence and
single-minded determination. But there’s more to it than that. It raises
questions about innovation in surgery, the acceptance of new procedures
and the research required to test them. And it flags up the likelihood
that other patients with other diseases are harbouring similarly
ingenious or radical ideas.
Tal Golesworthy has Marfan syndrome. The man memorialised by this
name, Antoine Bernard-Jean Marfan, was a Paris paediatrician. In an 1896
case presentation he described a five-year-old girl with unusually long
limbs, fingers and toes. It was not Marfan himself who named the
condition, but one of his successors. Paradoxically, it is not even
certain that the girl really was suffering from what now constitutes
Marfan syndrome – but the name stuck.
The disorder is genetic in origin, either by inheritance or by
spontaneous mutation. Besides their long, slender bones – and so their
unusual height – people with the syndrome may have loose and flexible
joints and various eye problems. The ultimate cause of all this is an
error in the genes responsible for a protein called fibrillin, an
essential component of the elastic fibres found in, among other tissues,
the blood vessels. And this accounts for one of the biggest threats
that Marfan syndrome presents to Tal Golesworthy and his fellow
sufferers. The abnormality leaves one of their major vessels weakened
and less able to cope with the strain imposed upon it by the pressure of
the blood within.
One of the body’s biggest arteries, the aorta, receives blood
straight from the left ventricle of the heart. The blood arrives not in a
steady stream but in pulses. The aorta acts as a kind of hydraulic
shock absorber, successively expanding and contracting as the pressure
within it rises and falls. Any weakness in the wall of the aorta can
allow the development of a balloon-like bulge, an aneurysm. For whatever
reason, the weakest point of the aorta in people with Marfan syndrome
is its root, the section adjacent to the valves guarding the exit from
the left ventricle. If an aneurysm ruptures, the consequent internal
bleeding is potentially fatal.
Golesworthy was five or six when he learned that he had Marfan
syndrome. His father also had it. “He was 6 foot 8 inches and had very
poor visual acuity,” Golesworthy recalls. But doctors then seem to have
been less aware of the hazards of the condition. Golesworthy himself had
no idea of its implications for his aorta until he was in his 30s. By
then the blood vessel was already enlarged – and it was then he was told
of the need for surgery.
Introduced in 1968 and reliant on a heart–lung machine temporarily to
maintain the flow of blood around the body, the standard operation
involves the removal of the first and weakest section of the aorta along
with the adjacent heart valves. The surgeon then replaces the aorta
with a length of stiff tubing made of the polyester Dacron, and the
natural valves with mechanical ones.
The drawback is that mechanical valves are apt to generate blood
clots. Lifelong anticoagulant drug treatment minimises this risk of an
embolism, but creates hazards of its own. Users are at increased risk in
any illness or injury that causes bleeding. “You’re constantly walking a
tightrope between an embolism and a bleed,” Golesworthy explains.
To say he was unenthusiastic would be an understatement. “I wasn’t
desperately keen on the idea of surgery,” he confides, “but what really
distressed me was the thought of life on anticoagulant drugs.”
Although he didn’t know it at the time, surgeons had devised a
version of the operation in which the patient’s own valves are left in
place, so avoiding the need for anticoagulants. Problem solved? It seems
not. Although this operation is also effective, it has a higher
long-term failure rate. So here’s the choice: a good success rate at the
price of lifelong anticoagulants; or avoid anticoagulants but face a
greater chance of having to go through the whole procedure again.
Golesworthy doesn’t know why he wasn’t offered the alternative
operation, but suspects it had more to do with the subjective
preferences of individual surgeons than with hard data. Either way, he’d
already begun to wonder if there might be a third way: one better than
either of the two on offer.
Golesworthy saw the aortic weakness with the eyes not of a doctor but
of an engineer. Why replace failing pipework, he asked himself, when it
would be simpler to shore up what’s already there? “I said to myself,
hang on, we can scan the aorta, we can use CAD [computer-aided design],
we can produce a totally bespoke support. We can do this.”
If there were such a thing as an engineering gene, you could be
confident that Golesworthy had inherited it. His father was an
aeronautical engineer. “As soon as I could walk I’d pick up a
screwdriver and start taking things apart. I had the back off the telly
when I was about six.”
Golesworthy achieved his chartered engineering status the hard way.
He began by studying materials science but didn’t like the course,
dropped out, joined the Coal Research Establishment and discovered
part-time education. “I couldn’t get engaged with university,” he says.
He worked on a variety of topics from process chemistry to air pollution
control; he became familiar with all sorts of instruments and
technologies, including the use of textiles in fabric filters.
Golesworthy’s inspiration for his surgical invention grew out of a
basic plumbing remedy for a leaking pipe: wrap something round it. This
simple ploy had already occurred to surgeons, but they’d used stiff
materials; when in place these tend to move out of position or cut into
side vessels branching off the aorta.
Golesworthy had no idea that surgeons had already tried and abandoned
the wrapping idea. In any case the engineer in him rejected it, too.
“You look at the shape [of the aorta] and know you’ve got to apply a
uniform force over the entire thing. How can you get that by wrapping
it?” Instead, he envisaged something more sophisticated: an external,
made-to-measure covering, a sleeve that would prevent the aorta’s
dangerous ballooning. In due course the procedure acquired a fancy name:
PEARS, standing for ‘personalised external aortic root support’.
His proposal was to use a CT scanner to plot the three-dimensional
shape of the aortic root. With the right computer software,
rapid-prototyping technology (3D printing) could then be used to make a
life-sized model of the vessel. This would serve as a former on which to
make an individualised textile sleeve of the shape and size to fit
around the aorta and prevent its further expansion. And not a stiff
sleeve, but a soft, pliable, knitted, porous mesh. In opting for this,
Golesworthy was able to call on the knowledge he’d acquired through
using textiles as filters during his coal industry days.
But there was still a hurdle: how do you launch a medical innovation
if you’re an engineer with no professional involvement in healthcare?
Golesworthy decided to make his pitch during one of the Marfan
Association’s annual information meetings for patients about 15 years
ago. One of the speakers was Tom Treasure. Now attached to the Clinical
Operational Research Unit at University College London, a group that
seeks practical solutions to problems in clinical medicine, Treasure was
then a practising cardiothoracic surgeon.
Treasure recalls how Golesworthy approached him at the end of his lecture.
“Now then, Professor, about all this cutting out,” he said. “You
ought to get up to date and use a bit of CAD modelling.” Treasure had no
idea what Golesworthy was talking about. “Tal was using engineering
jargon. ‘We can do RP,’ Tal told me. I hadn’t a clue then what rapid
prototyping was.” But Treasure was intrigued. In subsequent
conversations he began to understand and thought it had the makings of a
good idea. “I’ll give this man the best hearing I can,” he decided.
He did, and the idea started to acquire momentum. “All credit to
Tom,” says Golesworthy. “He opened the doors to the medical world, and
away we went.”
Treasure was not in a position to perform the pioneering operation
himself, so the next task was to find a surgeon who could do it. As he
was well aware, many surgeons would simply have rubbished the proposed
new technique. In fact many did, and even now some remain to be
convinced. Treasure approached John Pepper, a professor of
cardiothoracic surgery in the National Heart and Lung Institute at
Imperial College London: someone else Treasure describes as “prepared to
buck the trend”. Pepper’s response was positive.
I arrange to meet Pepper at the Royal Brompton Hospital. He turns out
to be a solidly built man, jovial and friendly, but with the decisive
manner you might expect of one of the UK’s leading heart surgeons.
Coming himself from an engineering family, he clearly admires the
profession that, by entering medicine, he chose not to follow. “We live
in different worlds. Engineers are interested in everything down to a
ten-thousandth [of an inch]. In biology we’re nowhere near that kind of
precision.” It’s not surprising that he too had been quick to see the
virtues of creating a model of the patent’s aorta and fashioning a
made-to-measure support. “It needed an engineer to tell us poor doctors
how to do things,” he says.
There was still the problem of money. Having failed to attract
support from one of the big heart charities, Golesworthy was beginning
to feel under pressure. He was still reluctant to undergo conventional
surgery, but his aorta was in escalating need of repair. In the end he
raised the money by starting a company called Exstent Ltd to look for
investors. He had only one customer in mind at this point – himself.
Because he lacked the necessary CAD skills, he also sought the help
of engineers at Imperial College London. “When you’re as motivated as I
was, you make things happen. If you’ve got to blag your way in, you blag
your way in… My aorta was dilating and I had to get on with it.”
Tal Golesworthy is not, of course, the first person with an illness
to have devised a new and better way of coping. Some patient
associations have cottoned on to this and do their best to spread the
word. What we’ve lacked is a central repository for all such ideas. No
Patient Innovation is a
website set up by a group at the Católica Lisbon School of Business and
Economics. It allows patients who’ve developed their own solutions for
their illnesses to share what they’ve learned or invented. The project
leader is Pedro Oliveira. His original interest was in user innovation
generally: the part that people who use products and services can play
in developing new strategies and procedures.
“What we found in our research was that patients often developed
amazing devices and strategies,” says Oliveira. “But we also found that
this information often doesn’t diffuse. Their main aim is to fix their
own problems, not to help others.” Even if the thought of spreading the
word does cross their minds, they don’t usually know how to go about it.
Oliveira and his colleagues launched Patient Innovation in February
2014, and he tells me they have received over 1,200 independent
submissions. A medical team screen them all; about half have been judged
worth putting on the website.
Golesworthy was among the invited speakers at Patient Innovation’s
inaugural meeting, and has since been selected for one of its annual
awards. Another has gone to Louis Plante, a 26-year-old Canadian with
cystic fibrosis. His idea was for a hand-held acoustic device to aid
The lungs of people with cystic fibrosis tend to produce a large
amount of thick mucus, and various methods have been devised for moving
or dislodging it to allow it to be coughed up. While sitting close to
the large speakers at a rock concert Plante began coughing. He wondered
if it might have been induced by mucus dislodged as a consequence of
low-frequency vibrations in his chest. An electronics technician by
trade, he devised a machine for simulating this effect. It worked. He
used his own knowledge to ease his own problem – and then commercialised
Other awards have been given for a sensor that sends signals to a
mobile phone when an ostomy bag is full, for a walking stick for blind
people that can separately detect objects at head, waist and foot level,
and for foldable wheels to make wheelchairs more easily portable. How
many other such ingenious ideas might there be, similarly ripe for
By 2004, Golesworthy had convinced investors to part with enough
money, and the remaining wrinkles in the manufacturing process had been
ironed out. It was time to go into the operating theatre.
“I always said I’d be the first patient,” Golesworthy recalls. “Then I
was persuaded that I should stand there in the theatre with the
surgeon, John Pepper, in case there were any hiccups. But the guy we had
lined up dropped out at the last minute.” So Golesworthy had his way;
he was after all to be the guinea pig.
Although pleased to be patient number one, Golesworthy did not enjoy
his ten-day wait for the operation. “I was absolutely beside myself. I
couldn’t concentrate, I couldn’t work, I couldn’t eat, I was totally
agitated. It was awful.” What he found unnerving was the prospect of
surgery per se; in the sleeve itself he had total confidence. Fully
justified, as things turned out.
When I asked Golesworthy if I could pay a visit to the company’s
premises in Tewkesbury where the implants are made, he pointed out that
there was virtually nothing to see. He was right. It’s even less
exciting than our lunchtime sandwiches. All I can do is peer through the
glass panels of the clean room where the implants are made – by
Each is cut from a sheet of polyethylene terephthalate, a
thermoplastic polymer resin chemically similar to Dacron but woven into a
soft textile. About the size of a large sausage, though slightly longer
and fatter, the shape is created by wrapping the textile round its
customised former, and completed with a seam up one side – which the
surgeon unpicks in the theatre and resews once the sleeve is in place
round the aorta. It takes Golesworthy about a day to make a couple of
them, and it’s quite fiddly. Although the device is protected by patent,
he remains coy about the detail of making them. There is, perhaps, an
element of craft skill in the process.
The sleeve – it goes by the trade name ExoVasc – arrives in the
operating theatre wrapped on its former. When it is in place around the
aorta the surgeon secures it by sewing up its single axial seam.
Quicker, simpler, safer – and with no need to interrupt normal blood
Thinking back to that first operation, Pepper says he was 95 per cent
confident that the procedure would succeed. “Of course,” he says, “I’d
discussed it with the patient.” He then laughs, reflecting on the
absurdity of discussing the pros and cons of the implant with the man
who’d invented it.
Up until this point Golesworthy had been focused on fixing his own
problem. “Once I’d sorted myself out,” he says, “I thought, now I can
help others.” Had Golesworthy’s implant failed, the company he’d set up
would have been left mired in debt. Even success has been hard work:
“It’s becoming a viable business. But from 2004 to about 2014 we were
doing risible numbers of patients and struggling to survive… If I had my
time again I doubt I’d do it,” he admits.
Thus far the results of PEARS have been impressive. The procedure is
quicker than either variant of the conventional surgery and requires no
interruption of the patient’s own blood circulation.
Of the two variants of the conventional operation, the one involving
removal of the natural heart valves is more durable – but the combined
risk of a bleed or thromboembolism created by the lifelong need for
anticoagulant drugs comes out at an annual 0.7 per cent. That doesn’t
sound too bad – until you realise that a patient who lives for 40 years
after the operation faces a more worrisome overall risk of around one in
four. The valve-sparing variant does not require anticoagulant drugs,
but is less durable. The annual reoperation rate appears to be 1.3 per
cent, so if the patient lives for 40 years the overall risk would be
more than two in five.
An early study showed that the textile sleeve does indeed halt the
progressive and dangerous expansion of the aortic root. A 2013 analysis
of the first 34 patients, with periods since surgery of between 3 and
103 months, revealed no problems with the vessel. One patient died, but
this was unrelated to the procedure itself.
Contrary to earlier fears, the sleeve stays exactly where it’s
placed. Moreover, the findings of an autopsy carried out on one patient
five years after surgery revealed that it seems to become incorporated
within the wall of the vessel, which is consequently more robust. The
pathologist compared the appearance of the section of the aorta within
the sleeve with an adjacent region lying outside it, says Pepper. “The
part inside looked normal… Maybe by taking some of the strain off the
aorta we were allowing healing to take place.” For the present, though,
this tantalising prospect is still speculative.
The process by which surgeons in Britain develop new procedures and
decide to adopt them is less clear-cut than that for dealing with new
drugs. But the state of near anarchy that once prevailed has given way
to regulation by hospital ethics committees, and to a set of guidelines
and protocols issued by the Royal College of Surgeons. A company wishing
to evaluate a new device by clinical trial must also seek formal
approval from the Medicines and Healthcare Products Regulatory Agency
(MHRA). Exstent did this early in the history of the PEARS project. For
routine use inside the NHS, a device or procedure then has to pass
scrutiny by the National Institute for Health and Care Excellence
(NICE). Its guidance on PEARS, issued in 2011, was cautiously welcoming –
subject, naturally, to the accumulation of further evidence.
As Pepper and Treasure are both aware, the ideal proof of the value
of PEARS would be a randomised controlled trial (RCT). These are always
difficult in surgery; individual surgeons may differ in the skill with
which they perform the same operation, for example. “Tom Treasure and I
have discussed this in detail and consulted people at two randomised
trial centres,” says Pepper. “We feel it [an RCT] is not feasible.” For
reasons that include the relative rarity of Marfan syndrome and the
difficulty of finding equally skilled surgeons for all three procedures,
this ‘gold standard’ is unlikely to be met. All that Treasure and
Pepper can do is encourage surgeons to follow-up their patients and
report what they find. “We did patient number 76 yesterday,” Pepper
tells me. “My plan is that when we get 100 patients we’ll go back
through them all very carefully and report.”
In spite of the evidence of benefit already to hand, gaining
acceptance for PEARS has not been easy. Why? Some surgeons are still
rejecting it without really listening, according to Pepper. “They don’t
recognise the advantages of computer-aided design and rapid prototyping.
They think it’s just another old wrap that didn’t work then and
probably won’t work now.”
Prompted in part by this initially negative response, Treasure has
looked back to other surgical innovations. His broad conclusion is that
surgeons will take on a new idea when there is no existing remedy for a
problem. But when there is already a solution to hand – a procedure that
may have taken years to devise and many more to perfect – they are less
than receptive to the claims of an alternative approach that will mean
revising or even abandoning a hard-won skill. If the alternative appears
simpler and easier, says Treasure, they’re even more sceptical. But as
far as PEARS is concerned, he thinks the tide of opinion is turning.
Surprisingly, for a man dependent on winning the support of surgeons,
Golesworthy is less than flattering about many of them. “Arrogant,
closed-minded, blinkered by their monopoly of knowledge,” he says. He
wouldn’t, of course, be the first person to suggest that surgeons often
display a powerful ego. And before dismissing Golesworthy’s complaints,
it’s worth noting that Treasure, while speaking in more measured terms,
endorses some of them. “We’ve been to meeting after meeting, and people
say the same untruths. They haven’t read the papers, they often don’t
listen to what you say.”
Pepper too is well aware of Golesworthy’s occasionally disparaging
comments about surgeons, but seems to find them more amusing than
annoying. And not only because he and Treasure are specifically
excluded, but also because he feels that Golesworthy doesn’t fully
accept the world we live in: a world that breeds extreme caution. “We
are absolutely obsessed by safety, and that’s like motherhood and apple
pie. You can’t be against it,” he says, growing progressively more
animated by his own argument. “We are fantastically risk averse, and yet
the public wants to see new treatments.” Risk aversion among his fellow
professionals, he insists, has been fuelled by the publication of
individual surgeons’ personal results – with a consequent erosion of
willingness to take on difficult cases in which the likelihood of
failure is inevitably higher.
Paradoxically – and boastfully but possibly also accurately –
Golesworthy reckons that his personal presentation of the procedure is
one factor that can change surgeons’ minds about PEARS. He speaks with
the conviction born of being what he is: part of the literally living
proof of PEARS. “He has a passion for it,” adds Pepper. “And to make
anything work you have to have a passion.”
The relatively high cost of the sleeve makes the initial operation
more expensive. But through shorter operating times and, in the longer
term, the elimination of routine drug treatment and associated medical
checks, and a reduced likelihood of repeat operations, PEARS should save
The patient numbers are creeping up. Last year 17 underwent the
procedure; this year it will be over 20. It will be a while yet before
the implant repays all the investment, but Golesworthy is optimistic.
“It’s starting to rock and roll,” he says cheerfully. “We’ve got new
surgeons and new centres. We’ve just done four patients in New Zealand,
and they’re really pleased. We’ve got centres in the Czech Republic, a
couple in Poland are about to start, and we’re getting two more in the
About the long-term future of PEARS, Pepper is confident. “We’ve
proved the concept,” he says. He doesn’t envisage it totally displacing
the other two operations. Patients whose Marfan syndrome has not been
inherited may be less well-informed and, correspondingly, less likely to
seek help until their condition is more advanced. Trying to sleeve a
grossly enlarged and therefore fragile aorta might trigger the very
calamity that PEARS is intended to prevent. But below a critical size
Pepper can envisage it becoming the treatment of choice: “If the patient
comes to you early in the disease, and the aorta is enlarged, but not
massively enlarged, PEARS is a good procedure.”
Future Marfan patients wondering to whom they owe thanks for the
modest fabric sleeve that’s keeping them alive will surely be intrigued
to discover its origins. Whatever gratitude they may feel, they owe it
not only to their surgeons, but to a bloody-minded and persistent
engineer: a fellow sufferer who thought he knew better than his doctors
how to fix his problem – and was right.
This article first appeared on www.mosaicscience.com under a creative commons license and can be foundhttps://mosaicscience.com/story/engineer-who-fixed-his-own-heart.
On November 10-11, 2016 NAMCP Medical Directors Institute, AAMCN, and AAIHDS proudly presented the Fall Managed Care Forum in Las Vegas, NV. The forum brought together Medical Directors and Nurses from around the country to learn in the same environment. Attendees were welcome to participate in live sessions in the Business Track, Health Management Track and/or the Oncology Track to earn continuing education hours. The forum provided breakfast, lunch, breaks, and plenty of reception time for building one's career network and speaking with industry exhibitors.
New Certified Managed Care Nurses (CMCNs). Below are individuals
receiving the certification from AAMCN's President, Jacquelyn Smith, RN,
BSN, MA, CMCN.
Managed Care Nurse Leader of the Year:
Clare Jarrard, RN, PhD, CMCN (center)
The award was presented to Clare by Sue Ellen Scott, RN (left) and Jane Goodeve, MSN (right).
The AAMCN Leadership Council developed the award to recognize AAMCN
members who have made outstanding contributions as a leader in managed
care nursing, their communities and patient advocacy. The award is given out once a year at the Fall Managed Care Forum.