PSN Library Files

Polio Survivors Abroad Canadian Roulette, Rue Britannia

Polio Survivors Abroad: Canadian Roulette, Rue Britannia Dr. Richard Louis Bruno

 

Lincolnshire Post-Polio Library copy by arrangement with the Harvest Center Library

 

Over the past few years much heat has been generated by suggested solutions to the difficult problem of reforming the American health care system. A solution promoted by the Clintons’, but despised by their free-market Republican opponents, is a single-payer health care system very much like the ones in Canada and Great Britain. Such systems, where treatment is paid for by the government, provide medical care to all citizens regardless of their ability to pay.

 

Or do they?

 

On recent trips to Canada and England, I had the opportunity to view the workings of two socialized medical systems from the point of view of one disability group in desperate need of rehabilitation services: the survivors of the polio epidemics of 40 years ago. What I discovered made me question whether socialized medicine is really too unsocialized to help people with disabilities.

 

Northern Exposure:

 

In Canada medical care is available to everyone without charge. So I didn’t anticipate the problems Canadian polio survivors have in obtaining treatment for their Post-Polio Sequelae (PPS), the new and sometimes disabling fatigue, muscle weakness and pain that occur about 40 years after polio.

 

One problem confirmed the warning I had heard so often during the our own health care reform debate: Canadians can pick their own general practitioner (GP), but cannot chose their own specialists such as physiatrists and orthopedists. The matter of choice may not be an issue when you have a common problem like a broken leg. But health care can become virtually unavailable when you have a newly discovered condition like PPS that most physicians don’t know how to treat.

 

“Many GPs have never heard of PPS or do not believe PPS is real,” explains Judith Lytle, post-polio services coordinator for Ontario March of Dimes. “So polio survivors are forced to play ‘doctor roulette,’ going from GP to GP until they find one who is informed about PPS and willing to refer to a specialist.”

 

“Many specialists are also uninformed about PPS,” warns polio survivor Jeannette Shannon, president of Ontario March of Dimes. “So, referral does not ensure treatment.”

 

Nearly a dozen polio survivors told me similar stories of diagnosis deferred and treatment ultimately denied: Through trial and error a polio survivor finds a GP who has heard of PPS, but knows nothing about diagnosis. She is referred to an orthopedist, but it takes six months to get an appointment. She sees the orthopedist, who believes the condition is real, but is ignorant of the treatment. She is then referred to a neurologist. It then takes six more months to see the neurologist, who does not believe in the reality of PPS, and who sends her back to the GP with the diagnosis “Nothing physically wrong.” It took polio survivors about a year to complete this circuit of doctors and still receive no treatment.

 

“Our goal is to stop ‘doctor roulette’ by creating PPS support groups throughout Canada that will educate polio survivors, their GPs and specialists about the cause and treatment of PPS,” said Lytle. Until this education process is completed, too many Canadian polio survivors will remain stuck suck on this medical carousel, feeling frustrated and desperate as they continue to lose function.

 

Yet with the help of an enlightened GP, polio survivors in some parts of Canada can receive outstanding care for PPS. Quebec’s polio survivors can be treated at the Montreal Neurological Institute (MNI), one of the world’s preeminent PPS research and treatment centers. Unfortunately, even MNI is in jeopardy because the Canadian health care system has another problem: It’s broke. There are too many people in need of health care and not enough tax revenue to pay for it.

 

“Deep federal budget cuts last year caused the MNI to eliminate the therapist in the PPS clinic,” says Sally Aitken, president of Polio Quebec Association. “The PPS clinic’s director was forced to send letters to his patients asking them to mail in contributions to pay the therapist’s salary,” says Aitken. “Thanks to the members of Polio Quebec, the PPS Clinic is open–for the moment.”

 

The Canadian national health care system hemorrhaging green, and polio survivors are not the only ones in jeopardy. The government has decided to stop paying for surgery to unblock coronary arteries in heart attack survivors disabled by chest pain because such surgery is no longer “worth the additional cost to society.” The result? Thousands of Canadians will be left in pain, non-functional and unemployable. Said Canadian Medical Association president Jack Armstrong, the health care system is becoming a “hollow shell of its former self.”

 

Cutting treatment to trim the budget is a terrifying aspect of government-run health care. A federal committee can just decide that rehabilitation for a disabling condition — or even curing that condition — is simply not “worth the additional cost to society.” It’s the usual short-term thinking. Long term, thousands of citizens will remain disabled, unemployed and consigned to a life at home waiting for their disability check — until there is no money left in the disability budget, either.

 

Pass the Parcel:

 

Britain, I imagined, would be more hospitable to polio survivors. A national organization for survivors — the British Polio Fellowship — has existed for more than 40 years, and 1996 was publicized by the BPF as “Polio Awareness Year.” But the U.K. is even less hospitable to polio survivors than is Canada.

 

“PPS is a well kept secret in Britain,” says Leicestershire polio survivor Helena Edwards. “And the BPF has taken an ultra-conservative position.” In 1995, the BPF distributed a questionnaire to all of its members asking about PPS symptoms. “When 77 percent reported new physical deterioration,” Edwards says, “the BPF was frightened off.” The BPF declared that the questionnaire was “too long” and had it’s

 

name removed from the report, this even after the findings were published in the BPF “Bulletin.”

 

Polio survivors and even many BPF members disagree with the organization’s head-in-the-sand position. As the only organization for polio survivors, the BPF is ideally positioned to educate Britain about PPS and advocate for treatment. Sadly, it has preferred to continue its traditional role of organizing sporting and social events. It is also sad that the British Government views the BPF as the representative of all polio survivors — even though only 7 percent of Britain’s polio survivors are members — and has adopted its inclination to ignore PPS. “I suspect the Government’s ignoring PPS has more to do with the British disease of ‘old-boy networks’ than intentional cruelty,” says Edwards. “Nevertheless, we are being hurt by their neglect.”

 

One particularly pernicious example of neglect is the decades-long relationship between the BPF and London’s government-funded St. Thomas Hospital. “Whenever we ask the BPF or the government for treatment we are told to go to St. Thomas, a centre for treating respiratory polio in the 1950s,” says Edwards, who did go all the way to London for an evaluation. “The doctor’s only suggestion was that I should have respiratory testing,” Edwards reports. “Nothing was said about my progressive leg weakness and loss of mobility, let alone the possibility of therapy.” To date, Edwards has had no treatment for any of her advancing symptoms.

 

That a St. Thomas doctor should identify only respiratory problems may be explained in part by the hospital’s own survey of 208 respiratory polio patients of 40 years ago. Seventy-eight percent reported new “progressive functional deterioration” that was deemed to be caused by “respiratory factors.” And although 22 percent were found to have “late functional deterioration” unrelated to breathing problems, new symptoms were always attributable to a clearly defined cause such as rotator cuff tears, arthritis or carpal tunnel syndrome. Although the survey made no mention of late-onset fatigue and muscle weakness, the St. Thomas doctors concluded that not one of their patients had PPS.

 

St. Thomas’ findings are in stark contrast to the survey of 1,200 BPF members conducted by polio survivor Peter Field. Sixty-six percent reported late-onset fatigue, 57 percent reported muscle weakness and only 16 percent reported new respiratory problems.

 

But St. Thomas’ position on PPS came as no surprise to those who know the hospital. After all, it originally treated survivors of respiratory polio, who should be reporting more breathing problems than the general post-polio population. And while patients describe St. Thomas’s chief physician as “a lovely kind man,” they say his focus on respiratory problems has caused him to be “unable to see the wood for the trees.

 

“But even if St. Thomas’ doctor did see “the wood,” and provided comprehensive treatment for PPS, a single hospital in London could not treat all 50,000 polio survivors in England, Scotland and Wales. So in 1994, polio survivor Fred Griffin wrote to local newspapers in the British Midlands describing the neglect polio survivors were experiencing at the hands of the BPF, the government and St. Thomas. These letters encouraged Helena Edwards and Internet maven Jim McVay to join Griffin in forming the Leicestershire Polio Network to lobby county health authorities for comprehensive PPS treatment by local doctors. “Why shouldn’t we have treatment locally,” asks McVay? “The government’s own tallies estimate that there are 1,600 polio survivors in this county alone.”

 

The Leicestershire Polio Network conducted its own survey of local polio survivors and found “a complete lack of diagnosis of PPS, much misdiagnosis, and the widespread prescription of inappropriate drugs and use-it-or-lose-it physical therapies,” says McVay. British polio survivors were also caught in their own version of “doctor roulette,” what Edwards calls the “pass-the-parcel game, with the patient

 

being the parcel.”

 

Hilary Hallam, secretary of another new polio network in Lincolnshire County, was one of those unfortunate “parcels.” A former police officer, lifeguard and occupational therapy aide working with people with disabilities, Hallam developed severe leg pain and progressive leg weakness, then fatigue, pain and weakness in her arms, that forced her to stop working. It took 14 months for her to circulate from GP to orthopedist to neurologist, in the end receiving a tentative diagnosis of nerve root damage and a referral back to her GP. “The neurologist said that I do not have PPS — as it doesn’t exist — and that there is nothing he can do,” says Hallam. In an attempt to end the parcel passing, Edwards wrote to her county’s director of public health about the failure of local neurologists to identify, diagnose and treat PPS. Health department officials spoke to local neurologists, and replied that the doctors “see only three or four new cases each year of polio patients who develop a form of motor neurone disease. No treatments,” it concluded, “are indicated.” What’s more, the officials were puzzled by the Network’s complaints: “You have acknowledged that the service available in Leicestershire does not warrant particular criticism in comparison with others parts of the country.”

 

Edwards was incredulous. “We complain that local neurologists do not recognize PPS,” she says. “The health department asks the neurologists if they see cases of PPS and their answer is ‘No.’ So the health department concludes there is no PPS. We’re in a Catch 22.”

 

As for local services not warranting criticism in comparison to the rest of England, Edwards replies, “That’s like saying that because there is no food anywhere in the country, no one should feel hungry. Leicestershire is no different from the rest of the U.K. Treatment for PPS doesn’t exist anywhere.”

 

Out of frustration, the Network has decided to find other resources, rather than depend on help from the BPF or local authorities. Edwards and McVay have met in Oxford with Hallam, Peter Field and other polio survivors to try to establish Britain’s first comprehensive PPS treatment center. Edwards has also met with Britain’s Secretary of State for Health and has asked the European Parliament for funding. “It is sad that we have to ask other countries for money to help British citizens,” she says. “But Britain has turned a blind eye to its polio survivors.””Understanding the cause and treatment of PPS has progressed in the U.S. by leaps and bounds over the past fifteen years,” adds McVay. “Time has been allowed to stand still in the U.K., with terrible physical and emotional consequences. For polio survivors on this side of the pond, the year is still 1980.”

 

America: Dollars or Sense?

 

It may be heartening for America’s polio survivors to know that their country is the world vanguard of PPS research and treatment. There are support groups and clinics throughout the U.S. and widespread — though hardly universal — knowledge about PPS among polio survivors and physicians. Payment for treatment is routine by private insurance, HMOs and even Medicare.

 

But America’s health care system has begun to change and will change even more. Medical care is far too expensive, Medicare and Medicaid are going bankrupt, and there are now 40 million Americans without health insurance.

 

There is the clear and present danger that politicians, in promising to balance the budget and cut taxes, might just ignore the rights and needs of people with disabilities and create a lean and genuinely mean government-run health care system that denies rehabilitation — or even medical care — to all those they judge not “worth the additional cost to society.”

 

How can health care be provided to all without cleaning out the treasury or neglecting those who most need treatment? I must admit to being an unrepentant liberal. I believe, since our Declaration of Independence guarantees “life, liberty and the pursuit of happiness,” that it is the government’s responsibility to make “life” possible by providing medical care to all citizens. I had thought that a taxfunded, government-run, single-payer system was the best way to provide that care. But my experience with British and Canadian polio survivors has caused me to re-think my position. Now I just don’t know what the solution is.

 

Whatever the shape of America’s health care future, any changes must be made only after considering the failures of both “socialized” and “free-market” medicine, and the rights, needs and input of people with disabilities. Decisions about disabled Americans’ life and health should not be made from the government down … or from the bottom line up.

 

Richard L. Bruno is director of the Post-Polio Rehabilitation and Research Service at the Kessler Institute for Rehabilitation, Saddle Brook, NJ. He is chair of the International Post-Polio Task Force.

 

Resources:

 

Leicestershire Polio Network

 

c/o Voluntary Action Leicester, P.O. Box 30, Leicester LE1 7ZX; e-mail warrior@stayfree.co.uk

 

Lincolnshire Polio Network

 

69 Woodvale Ave., Lincoln, Lincolnshire LN6 3RD; e-mail linpolio@legend.co.uk

 

Ontario March of Dimes

 

Post-Polio Services, 60 Overlea Blvd., Toronto, Ontario M4H 1B6; 416/425-3463, 800/263-3463; e-mail omod@inforamp.net

 

Polio Quebec Association

 

P.O. Box 745, Succ. Jean-Talon, Montreal, PQ H1S 2Z5; 514/935-9158 (English), 514/334-5395 (French); e-mail aitken@accent.net

 

Note: Some of the above postal and email addresses may have altered since this article was published. Follow the links which will take you to our Organzations Directory and thence to the organisations own web site which should have current contact details.

 

The Lincolnshire Post-Polio Network

 

Registered Charity No. 1064177

 

An Information Service for Polio Survivors and Medical Professionals

 

All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

 

The Secretary, Lincolnshire Post-Polio Network

 

PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom

 

Telephone: +44 (0)1522 888601 Facsimile: +44 (0)870 1600840 Email: info@lincolnshirepostpolio.org.uk Web Site: www.lincolnshirepostpolio.org.uk

 

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

 

© Copyright The Lincolnshire Post-Polio Network

 

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

 

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

 

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/harvest/roulette.html> Created: January 1997

 

Last modification: 29th January 2010.

Polio Survivors Abroad Canadian Roulette, Rue Britannia Read More »

Red Flags for Polio Survivors

Red Flags for Polio Survivors

Dr. Richard Bruno

(Mis)Diagnosis: Many polio survivors have been incorrectly told they cannot have PPS because they didn’t have paralytic polio. The National Institute of Health has just studied pairs of identical twins, one who had paralytic polio and one who had non-paralytic polio. Seventy-one percent of those who had paralytic polio have PPS. The surprise is that 42 percent of those who had non-paralytic polio also have PPS.

Anesthesia: Polio survivors are anesthetized very easily because the part of the brain that keeps you awake was damaged by the poliovirus. They also stay anesthetized longer and can have significant complications from anesthesia. Even nerve blocks with local anesthetics can cause problems. All polio survivors should have lung function tests before having a general anesthetic. “Polio survivors with a lung capacity below 70 percent may need a respirator or respiratory therapy after surgery,” says Augusta Alba, of New York’s Goldwater Memorial Hospital.

Your complete polio history and any new problems with breathing coughing or swallowing should be brought to the attention of your surgeon or dentist–and especially your anesthesiologist–long before you go under the knife. Also, polio survivors should not have same-day surgery.

Pain: Two studies have shown that polio survivors are twice as sensitive to pain as everyone else and need more pain medication for a longer period after surgery or an injury. Survivors, however, have had to develop an extremely high pain tolerance to deal with their increased pain sensitivity and are not likely to become addicted to medications.

Sleep: Most polio survivors have trouble sleeping due to pain, anxiety or sleep disorders such as sleep apnea or generalized random myoclonus. GRM occurs when muscles in different parts of the body twitch and jump throughout the night.

Amazingly, most polio survivors aren’t aware that they stop breathing or twitch. If you awaken with a headache, with your heart pounding, short of breath or don’t feel rested in the morning, call a local sleep disorders center for a sleep study.

DO’S AND DON’TS

[The following information has been made available with the permission of the Easter Seal Society of Washington. The opinions expressed are those of the individual writer(s) and do not necessarily constitute an endorsement or approval by the Easter Seal Society or Polio Outreach Advisory Council. Although it does not imply endorsement, it is provided as a service for those seeking such information. Always consult your doctor before trying anything recommended in this information or any other publication.

For additional information concerning post-polio please contact your local Easter Seal Society, post-polio support groups, or other such services in your area.!

A GUIDE FOR POST-POLIOS DO’S AND DON’TS GENERAL THERAPIES AND THINGS

TO AVOID

What follows is a general, practical guide for post-polios to use, and summarizes the current thinking about post-polio. It will be most valuable if it stimulates you to seek further and more specific information.

+ Take time to rest. Nap (if possible) during the day, work fewer hours, and take longer vacations

+ If you are experiencing increasing muscle weakness, exercise only under the supervision of a knowledgeable physician.

+ Make sure your food intake is nutritious,

+ Be alert to (but not obsessed with) changes in your body, and heed your body’s signals.

+ Take note of any new symptoms plus clear or gradual changes.

+ Get enough exercise to prevent disuse atrophy, but not enough to produce overuse damage.

+ Learn how to pace yourself.

+ Prevent the secondary complications of weakness, particularly falls, this might entail the use of crutches or a cane, a wheelchair for extended travel, or braces or other adaptive equipment.

+ Avoid weight gain. Too much weight only aggravates stress on joints and muscles.

nsider possible adaptations to your lifestyle; even minor adjustments (changes in hobbies or modes of transportation) can help.

+ Do not assume that every physician fully understands post-polio problems. Educate yourself and never hesitate to ask questions,

+ Minimize alcohol use, particularly at bedtime. Alcohol inhibits swallowing, interferes with nutrition, and causes falls and accidents.

+ Maintain a positive attitude toward your health. Accept change, adapt, and never equate your self-worth with physical disabilities.

Red Flags for Polio Survivors Read More »

Preventing Complications in Polio Survivors Undergoing Surgery

THE KNIFE IS NOT SO ROUGH IF . . .

(PREVENTING COMPLICATIONS IN POLIO SURVIVORS UNDERGOING SURGERY)

Richard L. Bruno, Ph.D.

 

Lincolnshire Post-Polio Library copy by arrangement with the Harvest Center Library

Director, Post-Polio Rehabilitation and Research Service

Kessler Institute for Rehabilitation – Saddle Brook

Associate Professor,

Clinical Physical Medicine and Rehabilitation

New Jersey Medical School/UMDNJ

Chairperson, International Post-Polio Task Force

When orthopedist Henry Kessler wrote The Knife is Not Enough, describing what would become the specialty of rehabilitation, polio was America’s main event. Today, only a handful of specialists know how to treat polio survivors and Post-Polio Sequelae (PPS). Even more disturbing, few physicians have heard about, and even fewer know, what PPS are or under stand polio survivors’ special needs in a variety of medical settings.

Unfortunately, surgeons are often the most unaware of issues that don’t relate to their specialty. If you have to ‘go under the knife,’ the innocent ignorance of your surgeon (or his thoughtless disregard for your non-surgical problems) can lead to unnecessary emotional discomfort, excessive physical pain and occasionally serious complications.

However, it is important that polio survivors not add PPS to their list of worries surrounding surgery. Not one of our hundreds of patients has died or been seriously damaged even if none of the issues discussed in the following article was addressed. And, only a few of our hundreds of post-polio patients have permanently lost function after surgery.

So, read the article and give a copy to each member of the surgical team and the nurses on the hospital floor where you will be staying. Discuss the article in detail with your surgeon and ask that a copy be placed in your medical chart before you go under the knife. Hopefully, all members of your surgical team – the surgeon, anesthesiologist, recovery room and floor nurses – will listen to you and become educated about the special problems surrounding surgery for polio survivors – and your individual medical issues in particular – long before the order, “Scalpel.” is given in the O.R.

PREVENTING COMPLICATIONS IN POLIO SURVIVORS UNDERGOING SURGERY

Richard L. Bruno, Ph.D.

PPS Monograph Series. Volume 6(2). Hackensack:Harvest Press,1996.

Director, Post-Polio Rehabilitation and Research Service

Kessler Institute for Rehabilitation – Saddle Brook

Associate Professor,

Clinical Physical Medicine and Rehabilitation

New Jersey Medical School/UMDNJ

Chairperson, International Post-Polio Task Force

Unfortunately, only a handful of specialists treat Post-Polio Sequelae (PPS) – the unexpected and often disabling fatigue, muscle weakness, joint pain, cold intolerance, and swallowing, sleep and breathing problems – occurring in America’s 1.63 million polio survivors 40 years after their acute polio.[1,2] However, all medical professionals need to be familiar with the neurological damage done by the original poliovirus infection that today causes unnecessary discomfort, excessive physical pain and occasionally serious complications after surgery. This is a brief overview to inform patients and professionals about the cause and prevention of complications in polio survivors undergoing surgery.

PRE-OPERATIVE PREPARATION

The pre-operative period is the most important, since it is when polio survivors must establish communication with the surgical team. After the second opinion and a polio survivor’s decision to have surgery, the patient needs to ask the surgeon to read this article and the references cited. Then, surgical candidates must meet with the surgeon and anesthesiologist to discuss in detail patients’ complete polio and general medical histories and the problems that will likely arise before and during surgery, in the recovery room and on the nursing floor. It is also recommended that the polio survivor meet with the Supervisor of Nursing on the floor where they will be transferred after surgery to discuss likely problems during the post-op and recovery period.

Lungs. We recommend that all polio survivors have pulmonary function studies as part of their pre operative testing.[3] This is vital for those who had bulbar polio acutely, whether or not they used a respirator or an iron lung. But, polio survivors who have (or had) neck, arm or chest muscle weakness or have swallowing problems should also have their lung function tested so there will be no unpleasant surprises coming off the respirator at the end of the operation. Polio survivors with a lung capacity below

70% may need a respirator or respiratory therapy after surgery.[1]

Of course, polio survivors who use a respirator during the day or at night must discuss their respirator use and maintenance in detail with their surgeon, anesthesiologist, the nursing staff, and with their own pulmonologist, before admission to the hospital.

Physical Assistance. X-rays are a normal part of pre-op testing. Because of workers compensation concerns, many hospital staff are not eager to move or lift patients. Unfortunately, X-ray and examining tables are built at heights that are convenient for the professional, not the patient. Many polio survivors cannot step on a stool to get onto a high table, or even pull themselves over onto a table from a stretcher. Thus, polio survivors must ask for help in transferring.

Since most polio survivors have no experience asking for help under any circumstances, they need to find a phrase with which they are comfortable that will communicate whatever their needs are. Long explanations about having had polio or PPS or the specifics of which muscles are weak or paralyzed are not necessary. For example, a simple “My legs (arms) are paralyzed and I can’t get onto that table; I will need help” should suffice. This phrase may have to be repeated before the polio survivor will be assisted.

If the professional replies, “Oh, I bet you can move by yourself if you try!” or “Don’t expect me to lift you,” an appropriate response is “I cannot get onto the table. Please ask someone else to help me or let me speak to your supervisor.” A pleasant but steadfast refusal to do difficult or dangerous transfers is the polio survivor’s best defense against injury before or after surgery.

General Anesthetics. Polio survivors are exquisitely sensitive to anesthetic. It has been known for 50 years that the poliovirus damaged the area of the brain stem – called the reticular activating system (RAS) – responsible for keeping the brain awake.[4,5] Because the RAS was damaged in those who had paralytic and non-paralytic polio, a little anesthetic goes a long way and lasts a long time.

For example, the pre-operative medication used to ‘calm’ surgical patients – often a combination of Valium® and Demerol® – may by itself put polio survivors to sleep for 8 hours. (Such excessive and prolonged sedation does occur when I.V. Valium® is used alone in patients undergoing invasive but non surgical procedures, like endoscopy.) Add to a pre-operative ‘calming cocktail’ an intravenous anesthetic (like sodium pentothol ) or a gaseous anesthetic, and polio survivors have been known to sleep for days. In addition, polio survivors with respiratory problems may have trouble clearing the gaseous anesthetics. A number of our patients have awakened from anesthetic on a respirator in I.C.U. to the frightened faces of their family, surgeon and anesthesiologist several days after surgery.

Here is the first of rule of thumb – we call “Rules of 2” – for polio survivors’s having surgery: ANESTHETIC RULE OF 2 :

Polio survivors need the typical dose of anesthetic divided by 2.

This first “Rule of 2” is certainly not intended to dictate the dose of anesthetic, but merely to remind anesthesiologists that polio survivors need much less anesthetic than do other patients. This does not mean that a given polio survivor might require less than 1/2 the typical anesthetic dose, or that another won’t need more anesthetic. As always, the dose of anesthetic must be individually adjusted (for body weight, lipid space, etc) and be adequate to keep patients under during surgery but not cause them to sleep for a week.

Even applying the “Anesthetic Rule of 2” polio survivors may be very sedated, if not asleep, for many

hours after the surgery. This is one of the reasons why same-day surgery – even for complicated dental procedures – is not advisable for polio survivors. Sleeping or excessively sedated polio survivors cannot be expected to return home and take care of themselves after same-day surgery, since surgical complications may go unnoticed and sedation-impaired coordination makes falling likely. In spite of HMO pressure, NO POLIO SURVIVOR SHOULD HAVE SAME-DAY SURGERY FOR ANY REASON except for the most simple procedures that require only a local anesthetic.

Nerve Blocks. However, there are also problems with local anesthetics that numb only one area of the body. Spinal anesthetics, like epidural or saddle blocks used for childbirth and lower body procedures, often allow surgery without the patient being asleep and are therefore more desirable for polio survivors. However, the injection of a local anesthetic near the spine results in both pain-conducting nerves and motor neurons being anesthetized. Polio survivors are very sensitive to anything that further impairs their poliovirus-damaged motor neurons and a spinal anesthetic may cause polio survivors to be paralyzed for many hours. If a spinal anesthetic is used, polio survivors cannot be expected to get up and walk after surgery.

Curare-like drugs that are intended to paralyze muscles (e.g., succinylcholine) are typically used during major surgery to relax muscles that are going to be cut and make it easier for the ventilator to fill the lungs while patients are on the table. Again, any drug that interferes with muscle functioning will prevent polio survivors from walking or even moving for hours longer than it would for patients who didn’t have polio.

Regardless of whether a local, spinal or general anesthetic is used, the following applies: POST-ANESTHETIC RULE OF 2 :

Polio survivors require 2 times as long to recover from the effects of any anesthetics.

Blood and Guts. There are yet additional concerns. Polio survivors with muscle atrophy, especially in the thigh muscles, will have a smaller blood volume than would be expected for their height or weight. Therefore, bleeding during surgery may be more of a problem. Polio survivors may want to bank their own blood slowly over the course of weeks, even for procedures where excessive blood loss is not typically expected. However, since polio survivors may be significantly more fatigued and prone to faint after giving blood, relative’s blood may need to be banked instead.

Also, polio survivors can be sensitive to atropine-like drugs used to dry secretions during surgery.[6] Atropine-like drugs also slow the gut, and polio survivors may be excessively constipated after surgery or, rarely, actually have their intestines stop moving (paralytic ileus) for a period of time. These problems can be treated symptomatically as they would in someone who did not have polio.

Positioning. One overlooked problem is the positioning of the post-polio patient on the operating. Muscle atrophy, scoliosis and spinal fusions may make certain positions problematic, especially those involving extension of the spine. Since the polio survivor is usually unconscious during positioning, there will be no report of pain that would normally warn of potential damage. A number of polio survivors have experienced severe back pain for months post-op, and even permanent traction injuries of nerves, after being placed for hours in damaging positions. It would be advisable for the patient to be awake during positioning on the table to prevent such post-op complications.

POST-OPERATIVE CARE

Cold. If the dose of anesthetic is carefully regulated, a polio survivors’s first post-op experience will be

waking in the recovery room. Often, polio survivors awaken from anesthetic shivering violently. Research has shown that polio survivors are extremely sensitive to cold because they have difficulty regulating their body temperature. Polio survivors’ automatic (autonomic) nervous systems were damage by the poliovirus from the brain (hypothalamus) through the brain stem (reticular formation and vagal nuclei) to the spinal

cord (intermediolateral columns). [4-8] Polio survivors cannot control the size of their blood vessels, since the nerves that make the smooth muscle around veins and capillaries contract were paralyzed by the poliovirus. Therefore, polio survivors’ blood vessels open under anesthetic and dump the heat of their warm blood into the cold recovery room. Recovery room nurses need to know about this problem and help polio survivors stay warm. Additional blankets will help, and the surgeon can even write an order for a heated water blanket to be used in recovery.

Vomiting. Another post-op problem related to brain stem damage is vomiting. As in anyone who receives a general anesthetic, polio survivors can develop nausea and vomit. However, polio survivors are more apt to faint (have vasovagal syncope and even brief asystoles) when they attempt to vomit. [6] It is very important that post-operative emetic control be discussed with the anesthesiologist and administered before polio survivors go to the recovery room and that additional medication is written as needed in the post-op orders.

Choking. Yet another concern is difficulty swallowing as the patient is awakening. [9] Polio survivors who are aware of having swallowing problems, and sometimes in those without apparent swallowing difficulty, cannot clear secretions and may choke (or feel like they are choking) when they are lying on their backs, still half asleep, as the anesthetic is clearing. Polio survivors’ secretions need to be monitored in the recovery room and they should be positioned on their side if possible so that secretions can drain.

Pain. The single most troublesome problem after surgery is pain control. A number of studies have shown that many surgical patients are under medicated for pain. Under medication is a serious problem for the post-polio patient since two research studies have shown that polio survivors are twice as sensitive to pain as those who didn’t have polio.[8] Increased pain sensitivity is apparently related to poliovirus damage to endogenous opiate-secreting cells in the brain (paraventricular hypothalamus and periaquiductal gray) and spinal cord (Lamina II of the dorsal cord). [4,8]

RULE OF 2 for PAIN:

Polio survivors need 2 times the dose of pain medication for 2 times as long.

Since polio survivors are known to be extremely stoic, they are not likely to abuse or become dependent upon narcotics.

RECOVERY

In keeping with the “get ’em up, move ’em out” trend in medicine, there will be the tendency to get polio survivors up and walking almost immediately after surgery. This is not advisable for a number of reasons. When polio survivors reach the nursing unit, they may still be twice as sedated from the anesthetic as are other patients. Since polio survivors need a very clear head to be able to control their weakened, polio affected muscles to stand and walk, a fuzzy-headed polio survivor is at serious risk for falling.

Even if a polio survivor’s head is clear, the anesthetic or other drugs may have temporarily weakened or even paralyzed the muscles needed to stand and walk. What’s worse, the surgery may have cut muscles (especially abdominal muscles) that substitute for muscles paralyzed by polio (it is often muscle substitution that actually allows polio survivors to stand and walk, even though the muscles that are

typically needed to walk were permanently paralyzed). Not only will post-polio patients be unable to stand or walk, they may also be unable to even move to position themselves in bed. Polio survivors may also have low blood pressure after surgery that could itself cause lightheadedness, fainting and falls.

RULE OF 2 for RECOVERY:

Polio survivors should stay in bed 2 times longer than other patients.

Under any circumstances, polio survivors should get up slowly, first sitting up in bed, then sitting with feet dangling, then getting into a bedside chair with assistance, then standing with assistance and finally walking with assistance and appropriate assistive devices. With the necessity of additional additional bed rest, anti-embolism stockings to prevent blood clots may be a prudent precaution. Gentle physical therapy in bed may be advisable to maintain range of motion and for stretching, since polio survivors are prone to developing painful muscle spasms if they are not up and moving.

RULE OF 2 for LENGTH OF STAY

Polio survivors need to stay in the hospital 2 times longer than other patients.

While polio survivors may become deconditioned with bed rest some what faster than others patients, because of autonomic nervous system damage, the dangers of getting them up and walking too quickly far outweigh those of moving too slowly. Polio survivors have learned to be very aware of what their bodies can and can’t do. They are the best judges of when they can move, stand and walk safely.

Nursing Care and Nurse Caring. Polio survivors often have difficulty merely being in the hospital. They may have insomnia, anxiety, and even have panic attacks. These symptoms are easy to understand when it is remembered that as young children, polio survivors were ripped away from their families and admitted to rehabilitation hospitals for months or even years. [2,10,11] Post-polio children underwent multiple surgeries and painful physical therapy, procedures administered often without explanation and certainly without their consent.

Many post-polio patients have had multiple experiences of psychological, physical and even sexual abuse at the hands of hospital staff. Questions or complaints about painful and frightening therapies were not infrequently met by staff anger or punishment. Patients report having been locked in dark closets overnight when they asked questions, spoke out or cried. Necessary nursing care could be withheld for no apparent reason . Many post-polio children were slapped and some were actually beaten with rubber truncheons by physical therapists to ‘motivate’ them to stand up and walk.[10]

It is not surprising that polio survivors can be terrified of again becoming powerless patients at the mercy of hospital staff. Nursing staff’s appreciation of the childhood trauma polio survivors experienced at the hands of medical professionals, and taking a moment to actually listen and respond to the real needs of the adult post-polio patient, will go far toward making the patient feel safer and more comfortable during their stay.

Returning Home. There is another “Rule of 2” when surgical patients return home: RULE OF 2 for WORK:

Polio survivors need 2 times the number of days of rest at home before they return to work or household duties.

For all of the reasons described above, the entire recovery process takes longer for polio survivors. It is not uncommon for typically overachieving, hyperactive Type A polio survivors, who were taught as children to “use it or lose it,” to return to work or household duties the day after they return home from the hospital.[10,11] Polio survivors must be encouraged to rest and to return to activities slowly, especially if they are somewhat deconditioned and feel weaker or more fatigued post-op. Polio survivors should ask their surgeon for a note that allows them to stay home from work twice as long as the typical patient.

Post-Op PPS? The 1985 National Survey of Polio Survivors has shown that emotional stress is the second most frequent cause of PPS (after physical overexertion).[11] Certainly, there are few emotional or physical stressor more potent then surgery. So, polio survivors should expect some increase in fatigue and muscle weakness resulting from the combination of the physical and emotional effects of the surgery, anesthesia, other medications, and bed rest. However, only a handful of post-polio patients permanently lose function after surgery. Strength or endurance lost after surgery are typically recovered. To aid recovery, gentle physical therapy may be advisable. Passive stretching, range of motion exercises and slowly increasing endurance are more valuable than muscle strengthening exercise which can actually cause muscle weakness. Especially if a polio-affected part of the body has been operated on (stomach, back, arms or legs), a physiatrist who is thoroughly knowledgeable and experienced about the care of polio survivors and PPS should be consulted before surgery so that a post-op rehabilitation plan can be in place. A short stay in a rehabilitation hospital after surgery (especially after back or leg surgery) may make polio survivors recovery safer, faster and more complete.

Polio survivors need to remember:

RULE OF 2 for FEELING BETTER:

Polio survivors need 2 times longer to feel ‘back to normal’ again.

CONCLUSION

All of the “Rules of 2” are suggestions for polio survivors and the surgical team; they are not a substitute for specific information about the individual patient and communication among all members of the treatment team, including the patient. All polio survivors must be evaluated and managed according to their individual needs. Please take the time to read the following references (especially those in bold type) so that you will be fully knowledgeable about and be able to help meet polio survivors special needs.

REFERENCES

  1. Bruno RL. Ultimate burnout: Post-polio sequelae basics. New Mobility, 1996; 7: 50-59. [Lincolnshire Library Full Text]
  2. Frick NM, Bruno RL. Post-Polio Sequelae: Physiological and psychological overview. Rehabilitation Literature, 1986; 47: 106 – 111. [Lincolnshire Library Full Text] 3. Bach JR, Alba AS. Pulmonary dysfunction and sleep disorder breathing as post-polio sequelae: Evaluation and management. Orthopedics, 1991; 14 : 1329 – 1337. [Lincolnshire Library Full Text]
  3. Bodian D. Histopathological basis of clinical findings in poliomyelitis. Am J Med. 1949; 6: 563- 578.
  4. Bruno RL, Frick NM, Cohen J. Polioencephalitis, stress and the etiology of Post-Polio Sequelae. Orthopedics, 1991; 14: 1269 – 1276. [Lincolnshire Library Full Text]
  5. Bruno RL, Frick NM. Parasympathetic abnormalities as post-polio sequelae. Archives of Physical

Medicine and Rehabilitation, 1995; 76: 594.

  1. Bruno RL, Johnson JC, Berman WS. Vasomotor abnormalities as Post-Polio Sequelae. Orthopedics, 1985; 8: 865 – 869. [PubMed Abstract]
  2. Bruno RL, Johnson JC, Berman WS. Motor and sensory functioning with changing ambient temperature in post-polio subjects. In LS Halstead and DO Wiechers (Eds.): Late Effects of Poliomyelitis. Miami: Symposia Foundation, 1985.
  3. Bucholtz DW, Jones B. Post-Polio dysphagia: Alarm or caution. Orthopedics, 1991; 14: 1303- 1305. [PubMed Abstract]
  4. Bruno RL, Frick NM. The psychology of polio as prelude to Post-Polio Sequelae: Behavior modification and psychotherapy. Orthopedics, 1991; 14 : 1185 – 1193. [Lincolnshire Library Full Text]
  5. Bruno RL, Frick NM. Stress and “Type A” behavior as precipitants of Post-Polio Sequelae. In LS Halstead and DO Wiechers (Eds.): Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains: March of Dimes Research Foundation, 1987. [Lincolnshire Library Full Text]

POLIO SURVIVORS’ PRE-OP CHECKLIST

Give articles to surgeon and discuss:

Pre-op lung tests.

Lower blood volume and blood banking?

Authorization for a longer stay in the hospital.

Orders for post-op anti-vomiting medication.

Positioning on the table during surgery.

Orders for staying warm in the recovery room.

Difficulty clearing secretions in the recovery room and on the nursing unit.

Orders for increased dose of pain medication.

Physical therapy for stretching and range of motion in hospital.

Placing articles about polio in the medical chart.

Give articles to anesthesiologist and discuss:

Lung problems?

Lower dose of pre-op calming medication.

Lower dose of anesthetic.

Longer-term paralysis of muscles with spinal anesthetic and curare-like drugs.

Orders for post-op anti-vomiting medication.

Difficulty clearing secretions in the recovery room.

Give articles to nursing supervisor and discuss:

Longer-term sedation with anesthetic.

Difficulty clearing secretions on the nursing unit.

Orders for increased dose of pain medication.

Needing help in moving in bed and in the room.

Not standing or walking until you are fully awake and able.

Anti-embolism stockings.

Meet with PPS physiatrist before surgery and discuss:

Post-op rehabilitation plan.

Physical therapy for stretching and range of motion in hospital.

Possible admission to a rehab hospital before going home.

Physical therapy for walking and increasing endurance at home.

The Lincolnshire Post-Polio Network

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An Information Service for Polio Survivors and Medical Professionals

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Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/harvest/surgery.html> Created: 24th January 1997

Last modification: 29th January 2010.

Preventing Complications in Polio Survivors Undergoing Surgery Read More »

Respiratory Muscle Aids to Avert Respiratory Failure and Tracheostomy

Respiratory Muscle Aids to Avert Respiratory Failure and Tracheostomy

John R. Bach, M.D.

DoctorBach.com

Abstract

The purpose of this article is to describe the use of noninvasive inspiratory and

expiratory muscle aids to prevent ventilatory insufficiency and failure, and to permit the

extubation and tracheostomy tube decanulation of “unweanable” patients. Noninvasive

airway pressure aids can provide up to continuous ventilator support for patients with

little or no vital capacity and can provide for effective cough flows for patients with

severely dysfunctional expiratory muscles. An April 2010 consensus of clinicians from

22 centers in 18 countries reported 1623 spinal muscular atrophy type 1 (SMA1),

Duchenne muscular dystrophy (DMD), and amyotrophic lateral sclerosis (ALS) NIV

users, of which 760 developed continuous ventilator dependence to prolong survival by

over 3000 patient-years without tracheostomies. Four of the centers routinely extubated

unweanable DMD patients so that none of their over 250 such patients has undergone

tracheotomy. This approach is now making inroads into Canada via centers in Ottawa

and Montreal. What Are Physical Medicine Respiratory Muscle Aids? Inspiratory and expiratory muscle aids are devices and techniques that involve the manual or mechanical application of forces to the body, or intermittent pressure changes to the airway, to assist inspiratory or expiratory muscle function. The devices that act on the body include body ventilators that create pressure changes around the thorax and abdomen. Negative pressure applied to the airway during expiration assists coughing, just as positive pressure applied to the airway during inhalation (NIV) assists the inspiratory muscles. Continuous positive airway pressure (CPAP) does not assist ventilation and is not useful for patients with primarily ventilatory impairment.

Patient Evaluation Patients with diminished ventilatory reserve who are able to walk commonly

complain of exertional dyspnea. Eventually, morning headaches, fatigue, sleep disturbances, and hypersomnolence develop (2). For wheelchair users, symptoms may be minimal except during intercurrent respiratory infections when they complain of anxiety, inability to fall asleep, and dyspnea. Patients are observed for tachypnea, paradoxical breathing, hypophonia, nasal flaring, use of accessory respiratory musculature, cyanosis, flushing or pallor, and airway secretion congestion. Lethargy and confusion signal CO2 narcosis. Evaluation necessitates 4 items: a spirometer, peak flow meter, capnograph, and oximeter. The VC is measured in sitting and supine positions. The VC difference should be less than 7%. Since hypoventilation is worse during sleep, the supine rather than sitting position VC is the most important indicator of ventilatory dysfunction. When it is greater than 20% orthopnea often indicates the need for nocturnal NIV. Patients wearing thoracolumbar bracing should have the VC measured both with the brace on and off, since a good fitting brace can increase VC – whereas a poorly fitting one can decrease it. Spirometry is also useful for monitoring progress with GPB and air stacking, that is, retention of a maximum lung volume of aid delivered by manual resuscitator or volume

cycling ventilator that can be held by the glottis. The maximum volume is termed the maximum insufflation capacity (MIC). Patients who learn GPB can often air stack consecutive GPB gulps to or beyond the MIC (3). A nasal interface or lipseal can be used for air stacking when the lips are too weak for effective air stacking via the mouth. Cough peak flows (CPF) are measured using a peak flow meter (Access Peak Flow Meter, Healthscan Products Inc., Cedar Grove, NJ). CPF of 160 L/m are the minimum needed to cough effectively (3), and this is the best indicator for tracheostomy tube removal irrespective of remaining pulmonary function. Indeed, 40% of patients with ALS can survive despite continuous ventilator dependence using strictly noninvasive aids (1). Patients with VCs less than 1,500 ml have assisted CPF measured from a maximally stacked volume of air and with an abdominal thrust delivered simultaneously with glottic opening.(4) Coughing from a deep air stacked volume with a concomitantly applied

abdominal thrust is termed a manually assisted cough. For the stable patient without intrinsic pulmonary disease, arterial blood gas sampling is unnecessary. Besides the discomfort, 25% of patients hyperventilate as a result of anxiety or pain during the procedure. (5) Noninvasive continuous blood gas monitoring, including capnography and oximetry, yield more useful information, particularly during sleep. While all clearly symptomatic patients with diminished lung volumes require a trial of NIV to ease symptoms, if symptoms are questionable, nocturnal noninvasive blood gas monitoring can be performed. The oximeter and the capnograph, which

measures end-tidal pCO2, must be capable of summarizing the data. (2) These studies are

most conveniently performed in the home. Any questionably symptomatic patient with

decreased VC, multiple nocturnal oxyhemoglobin desaturations below 95%, and elevated

nocturnal PaCO2 should also undergo a trial of nocturnal NIV. Since, in general, only

patients improperly treated with supplemental O2 develop CO2 narcosis and ARF is

generally caused by ineffective cough and airway secretion management, any patient

finding that NIV use is more burdensome than symptoms of ventilatory insufficiency is

told that it is alright to discontinue NIV and return for a re-evaluation in 3 to 6 months.

For symptomatic patients with normal VC, an unclear pattern of oxyhemoglobin

desaturation, and no apparent carbon dioxide retention, sleep disordered breathing is

suspected and a polysomnogram warranted.(6) Obesity-hypoventilation patients are

treated with nocturnal ventilatory support, as are NMD patients, and not with CPAP.

Polysomnography is not indicated for patients with decreased VC (NMD) because it is

programmed to interpret every apnea and hypopnea as resulting from central or

obstructive events rather than from inspiratory muscle weakness. Further, treatment of

asymptomatic NMD patients on the basis of polysomnographic abnormalities neither

prolongs life nor improves its quality. The Intervention Objectives The intervention goals are to maintain lung and chest-wall compliance and to promote normal lung and chest-wall growth for children, to maintain normal alveolar ventilation around the clock, and to maximize CPF. The long-term goals are to avert episodes of ARF, especially during intercurrent chest infections; to avoid hospitalizations, and prolong survival without resorting to tracheotomy. Unweanable

intubated and canulated patients can be extubated and decanulated to NIV and mechanically assisted coughing (MAC). All goals can be facilitated by evaluating, training, and equipping patients in the outpatient setting and at home. Long-Term Management Goal One: Maintain pulmonary compliance, lung growth, and chest-wall mobility Pulmonary compliance is diminished because the patient can not expand the lungs to predicted inspiratory capacity. As the VC decreases, the largest breath one can take only expands a fraction of lung volume. Like limb articulations, regular mobilization is required to prevent chest-wall contractures and lung restriction. This can only be achieved by providing deep insufflations, air stacking, or nocturnal NIV (7). The extent to which the MIC exceeds VC (MIC-VC) objectively quantitated glottic, and therefore bulbar-innervated muscle integrity, and correlates with the capacity to use noninvasive

aids rather than tracheostomy. (4) Patients who can not close the glottis and, therefore, can not air stack, must be passively insufflated using a CoughAssistTM (Respironics International Inc., Murrysville, Pa), pressure-cycling ventilator at pressures of 40 to 70 cm H20, or manual resuscitator with the exhalation valve blocked. The maximum passive insufflation volume can be termed the “Lung Insufflation Capacity” or LIC. (8) The primary objectives of lung expansion therapy are to increase the VC and to maximize CPF, to maintain or improve pulmonary compliance, to diminish atelectasis, and to master NIV. In 282 spirometry evaluations of NMD patients for VC, MIC, and LIC, the authors found mean values of 1131 744 mL, 1712 + 926 mL, and 2069 + 867 mL, respectively. (8) The deeper lung volumes by air stacking also permitted patients to raise voice volume as desired. Because any patient who can air stack is also able to use NIV, if such a patient is intubated for respiratory failure, he or she can more easily be extubated directly to continuous NIV regardless of ventilator-free breathing ability (VFBA). Extubation of patients without VFBA who are inexperienced in NIV can result in panic, ventilator

dyssynchrony, asphyxia, and, at times, reintubation. Before patients’ VCs decrease to 70% of predicted normal, they are instructed to eas air stack 10 to 15 times, at least two or three times daily usually using a manual resuscitator. Because of the importance of air stacking, NIV is provided via ventilators using volume rather than pressure cycling, on assist/control mode. Infants cannot air stack or cooperate with passive insufflation therapy. All babies with spinal muscular atrophy (SMA) type 1, infants with SMA type 2, and others with infantile NMD who have paradoxical chest-wall movement require nocturnal NIV to prevent pectus excavatum and promote lung growth as well as for ventilatory assistance. (9) In addition to nocturnal aid, deep insufflations may be possible by delivering air from a manual resuscitator via an oral-nasal interface and timing the air delivery to the child’s breathing. Children can become cooperative with deep insufflation therapy by 14 to 30 months of age. Goal Two: Maintain normal alveolar ventilation by inspiratory muscle assistance Although the inspiratory muscles can be assisted by applying pressures to the body, negative pressure body ventilators cause obstructive apneas, are less effective than NIV, and become increasing less effective with age and decreasing pulmonary compliance. (10) Blood gases improve dramatically when switching patients from them to NIV. A body ventilator that continues to be useful is the intermittent abdominal pressure ventilator (IAPV) or “Exsufflation Belt!M» (Respironics International Inc., Murrysville, PA). It involves the intermittent inflation of an elastic air sac that is contained in a corset or belt worn beneath the patient’s outer clothing. The sac is cyclically inflated by a positive pressure ventilator. Bladder inflation moves the diaphragm upward to assist in expiration. During bladder deflation, gravity causes the abdominal contents and diaphragm to return to the resting position and inspiration occurs passively. A trunk angle of 30 degrees or more from the horizontal is necessary for it to be effective. If the patient has any inspiratory capacity or is capable of GPB, he or she can add volumes of air autonomously taken in to that taken in mechanically. The IAPV

augments tidal volumes by 300 to as high as 1,200 mL; patients with less than one hour

of breathing tolerance usually prefer it to using NIV during daytime hours.(11) Noninvasive Intermittent Positive Pressure Ventilation (NIV) NIV can be noninvasively delivered via lipseals, nasal, and oral-nasal interfaces for nocturnal ventilatory support. Mouthpiece and nasal IPPV are open systems that require the user to rely on central nervous system reflexes to prevent excessive insufflation leakage during sleep (2, 12), thus, supplemental oxygen and sedatives can render NIV ineffective. NIV should be introduced in the clinic or home setting. There are numerous commercially available nasal interfaces (CPAP masks). Several should be tried and the patient should be encouraged to alternate their use. Excessive insufflation leakage can be avoided by switching to the use of a closed noninvasive system such as using lipseal-nasal prong systems. Such interfaces deliver air via mouth and nose during sleep and require minimal strap pressure. This optimizes skin comfort and minimizes air (insufflation) leakage. Excessive leakage is also prevented by sustaining ventilatory drive by maintaining normal daytime CO2 and avoiding supplemental O2 and sedatives. NIV via a 15 mm angled mouth piece is the most important method of daytime ventilatory support. Some patients keep the 15 mm angled mouthpiece between their teeth all day. (13) Most have the mouthpiece held near the mouth. A metal clamp attached to a wheelchair can be used for this purpose, or the mouthpiece can be fixed onto motorized wheelchair controls-most often, sip and puff, chin, or tongue controls. The ventilator is set for large tidal volumes, often 800 to 1500 mL. The patient grabs the mouthpiece with his mouth and supplements or substitutes for inadequate autonomous breath volumes. The patient varies the volume of air taken from ventilator cycle to ventilator cycle and breath to breath to vary speech volume and cough flows as well as to air stack to fully expand the lungs. Some neck movement and lip function are needed to grab the mouth piece and use it without leaking air. The soft palate must move in the posteriocranial direction to seal off the nasopharynx. In addition, the patient must open the glottis and vocal cords, dilate the hypopharynx, and maintain airway patency. These normally reflex movements may require a few minutes to relearn for patients who have been receiving ventilation via a tracheostomy tube. (14) Nasal NIV is most practical for nocturnal use but it is also indicated for infants and for those who can not grab or retain a mouth piece because of oral muscle weakness, inadequate jaw opening, or insufficient neck movement. Continuous nasal NIV is, nevertheless, a viable and desirable alternative to tracheostomy. (2) Nasal NIV users learn to close their mouths or seal off the oropharynx with their soft palates and tongues to prevent oral insufflation leakage. Suboptimal humidification dries out and irritates nasal mucous membranes, causes sore throat, and results in vasodilatation and nasal congestion. Increased airflow resistance to 8 cm H2O can be caused by the loss of humidity that is due to unidirectional airflow with expiration via the mouth during nasal CPAP or NIV. (15) This can be reduced by warming the inspired air to body temperature and humidifying it using a hot water bath humidifier. (15) Decongestants can also relieve sinus irritation and nasal congestion. Switching to lip-seal-only interface can relieve most if not all difficulties associated with nasal NIV. Other than perhaps for an uncontrollable seizure disorder and inability to cooperate, there are no contraindications to the long-term use of noninvasive inspiratory muscle aids. Abdominal distention tends to occur sporadically in NIV users. The air usually passes as flatus once the patient is mobilized in the morning. When severe, however, it can increase ventilator dependence and necessitate a rectal tube to decompress the colon or a nasogastric or gastrostomy tube to burp out the air. Despite aggressive lung mobilization and expansion three times daily, often to over 60 cm H2O pressures and along with NIV support for over 50 years in many cases, we have had one case of pneumothorax in over 1000 NIV users. Although often described as a complication or limiting factor for NIV, secretion encumbrance most often results from failure to use MAC.

GOAL THREE: ASSIST EXPIRATORY MUSCLES TO AUGMENT COUGH FLOWS

Manually assisted coughing is the use of air stacking for any patient with less than

1500 ml of VC to precede an abdominal thrust timed to glottic opening. With the higher

lung volumes by air stacking, assisted CPF of 4.3 $1.7 L/sec were obtained by

comparison with 2.5 2.0 L/sec unassisted.(4) In 364 evaluations of our NMD patients

able to air stack, the mean VC in the sitting position was 996.9 mL, the mean MIC was

1647.6 mL, and although CPFs were 2.3 L/s (less than 2.7 L/s or the minimum needed to

eliminate airway secretions) mean assisted CPF were 3.9 L/s. This is the difference

between coughing effectively to prevent pneumonia and ARF or not. (16) The inability

to generate 160 L/m of assisted CPF despite having a VC or MIC greater than 1 L

indicates upper-airway obstruction often due to severe bulbar-innervated muscle

dysfunction and should be evaluated by laryngoscopy and reversible lesions corrected

surgically.

Mechanically assisted coughing (MAC) is the combination of the use of

mechanical insufflation-exsufflation (CoughAssist(M) with an exsufflation-timed

abdominal thrust. Deep insufflations followed immediately by deep exsufflations at

pressures of 40 to -40 cm H2O are usually the most effective and preferred. MAC can be

provided via an oral-nasal mask, a simple mouthpiece, or via a translaryngeal or

tracheostomy tube. When delivered via the latter, the cuff, when present, should be

inflated. The CoughAssistTM can be manually or automatically cycled. Manual cycling

facilitates caregiver-patient coordination of inspiration and expiration with insufflation

and exsufflation, but it requires hands to deliver an abdominal thrust, to hold the mask on

the patient, and to cycle the machine.

One treatment consists of about five cycles of MAC followed by a short period of

normal breathing or ventilator use to avoid hyperventilation. Insufflation and exsufflation

times are adjusted to provide maximum chest expansion and rapid lung emptying. In general, 2 to 4 seconds are required. Treatment continues until no further secretions are

expulsed and secretion related oxyhemoglobin desaturations are reversed. Use can be

required as frequently as every 30 minutes around the clock during chest infections.

The use of mechanical insufflation-exsufflation (MI-E) via the upper airway can

be effective for children as young as 11 months of age. Patients this young can become

accustomed to MI-E and permit its effective use by not crying or closing the glottis.

Between 2.5 and 5 years of age, most children become able to cooperate and cough on

queue. Exsufflation-timed abdominal thrusts are also used for infants.

Whether via the upper airway or via indwelling airway tubes, routine airway

suctioning misses the left main stem bronchus about 90% of the time.(17) MAC provides

the same exsufflation flows in both left and right airways without the discomfort or

airway trauma of tracheal suctioning. Patients prefer MAC to suctioning for comfort and

effectiveness, and they find it less tiring. (18) Deep suctioning, whether via airway tube

or via the upper airway, can be discontinued for most patients.

VC, pulmonary flow rates, and SpO2 when abnormal improve immediately with

clearing of airway secretions and mucus by MI-E,(19). An increase in VC of 15% to 42%

was noted immediately following treatment in 67 patients with “obstructive dyspnea,”

and a 55% increase in VC was noted following MI-E in patients with neuromuscular

conditions (20). We have observed 15% to 400% (200 to 800 mL) improvements in VC

and normalization of SpO2 as MI-E eliminates airway mucus for ventilator-assisted NMD

patients with chest infections. (21)

Of the three muscle groups required for effective coughing, MI-E can only take

the place of the inspiratory and expiratory muscles. Thus, it cannot be used to avert

tracheotomy very long if bulbar-innervated muscle function is inadequate to prevent

airway collapse and continuous saliva aspiration as often becomes the case in advanced

bulbar ALS. On the other hand, patients with completely intact bulbar muscle function,

such as most ventilator users with traumatic tetraplegia, can usually air stack to volumes

of 3 L or more, and, unless very scoliotic or obese, a properly delivered abdominal thrust

can result in assisted CPF of 6 to 9 L/s. These flows should be more than adequate to

clear the airways and prevent pneumonia and ARF without need for MAC. Thus, the

patients who benefit most from MAC have moderately impaired bulbar muscle function

that limits assisted CPF to less than 300 L/m. This is typical of most non-ALS NMD

patients, especially those with Duchenne muscular dystrophy (DMD) who benefit greatly

from MAC. (16) Patients with respiratory muscle weakness complicated by scoliosis and

inability to capture the asymmetric diaphragm by abdominal thrusting also greatly benefit

from MI-E.

Glossopharyngeal Breathing

Both inspiratory and, indirectly, expiratory muscle function can be assisted by

GPB (22). GPB can provide an individual with weak inspiratory muscles and no VC or

breathing tolerance with normal alveolar ventilation when not using a ventilator or in the

event of sudden ventilator failure day or night. (22, 23) The technique involves the use of

the glottis to add to an inspiratory effort by pistoning (gulping) boluses of air into the

lungs. The glottis closes with each “gulp.” One breath usually consists of 6 to 9 gulps of

40 to 200 mL each. During the training period, the efficiency of GPB can be monitored

by spirometrically measuring the milliliters of air per gulp, gulps per breath, and breaths

per minute. A training manual, (24) and numerous videos are available (25), the best of

which was produced in 1999. (26)

Although severe oropharyngeal muscle weakness can limit the usefulness of GPB,

we have managed 13 DMD ventilator users who had no breathing tolerance other than by

GPB (27). Approximately 60% of ventilator users with no autonomous ability to breathe

and good bulbar muscle function can use GPB and discontinue ventilator use for minutes

to up to all day. (22, 28) GPB is rarely useful in the presence of an indwelling

tracheostomy tube. The safety and versatility afforded by GPB are additional reasons to

eliminate tracheostomy in favor of noninvasive aids.

Because of their generally intact bulbar musculature, high level spinal cord injury

(SCI) patients are ideal candidates to master GPB for ventilator-free breathing and be

decanulated to NIV. In some centers, these patients are decannulated to free them from

the fear of ventilator failure or accidental ventilator disconnection.(22, 28)

Oximetry Monitoring and Feedback Protocol

For a hypercapnic patient with desaturation due to chronic alveolar

hypoventilation or the patient being weaned from tracheostomy ventilation, introduction

to and use of mouthpiece or nasal NIV is facilitated by oximetry feedback. A SpO2 alarm

set at 94% signals the patient to normal SpO2 by taking deeper breaths and to maintain

SpO2 over 94% all day. (16) When no longer possible to achieve this by unassisted

breathing, it is done by mouth piece or nasal NIV. With time, the patient requires

increasing periods of NIV to maintain normal SpO2. In this manner, central ventilatory

drive can be reset.

Continuous SpO2 feedback is especially important during respiratory tract

infections. The cough of infants and small children who can never sit is inadequate to

prevent chest cold-triggered pneumonia and ARF. The patients use MAC for any dip in

SpO2 below 95%. When using NIV continuously, such dips are usually due to bronchial

mucous plugging, and if not quickly cleared, atelectasis and pneumonia can quickly

result. Thus, patients are instructed to use NIV and MAC to maintain normal SpO2 to

avert pneumonia, ARF, and hospitalization. For adults with infrequent chest colds, rapid

access to MAC may be all that is necessary.

Invasive Ventilatory Support

The use of noninvasive aids can be contraindicated by the presence of: depressed

cognitive function, orthopedic conditions interfering with noninvasive interface use,

pulmonary disease necessitating high fiO2, or uncontrolled seizures or substance abuse.

(29) Also, the presence of a nasogastric tube can hamper the fitting of a nasal interface

and the use of mouthpiece or nasal NIV by interfering with both soft palate closure of the

pharynx and seal at the nose. Although tracheostomy ventilation can extend survival for

NMD patients (30), morbidity and mortality outcomes are not as favorable as by

noninvasive approaches. (31, 32) Tracheotomy is indicated for severe bulbar ALS

patients (1), rarely if ever for DMD and SMA patients except for the occasional SMA

type 1 patient. (33) Patients with DMD, even those who are continuously ventilator

dependent on noninvasive NIV, can avoid hospitalizations and pulmonary morbidity and

mortality for decades and tracheotomy indefinitely when properly managed by using

respiratory muscle aids. (16) Long-Term Outcomes SMA type 1 – We reported 17 SMA-1 patients with ventilation via tracheostomy tubes, mean age 78.2 (range 65–179) months, 25 of 27 lost all autonomous breathing ability immediately upon tracheotomy. None of the 21 who had not developed the ability to verbalize before undergoing tracheotomy did so after tracheotomy. On the other hand, 72 SMA-1 patients using NIV are alive at mean age 86.1 (range 13–196) months; 13 died at 52.3 (range 13–111) months. Sixty seven of the 75 could communicate verbally. Fifteen SMA-1 patients are now over age 10 and 6 over age 15 without tracheostomy

tubes and despite requiring continuous NIV in most cases. (33) Others have also reported

continuous NIV dependence for patients with SMA type 1. (34) DMD – 101 of our nocturnal-only NIV users eventually became continuously NIV dependent for 7.436.1 years to 30.136.1 years of age with 56 patients still alive. Twenty six of the 101 became continuously dependent without requiring hospitalization. Eight continuous tracheostomy ventilation users were decanulated to noninvasive NIV. Thirty one consecutive “unweanable” intubated patients were extubated to NIV/MAC. Seven of our DMD patients have lived to over age 40 including four who have required NIV continuously for 28, 19, 21, and 24 years to ages 41, 44, 48, and 47. Others have also reported prolongation of life for DMD by continuous NIV. (35)

ALS – Of 176 of our ALS patients using nocturnal NIV, 109 or 42% of all went

on to require continuous NIV for about 10 months before their SpO2 baseline decreased

below 95% because of saliva aspiration due to bulbar-innervated muscle impairment.

At the 69th Congress of the Mexican Society of Respirology and Thoracic

Surgeons, 20 centers from 14 countries presented data on over 1500 SMA1, DMD, and

ALS patients who required continuous ventilatory support without tracheostomy tubes.

Four of the centers routinely extubated unweanable DMD patients so that none of their

over 250 continuously ventilator dependent or any other patients has undergone tracheotomy.

For Extubation of Unweanable Patients

NMD-specific extubation criteria and a new extubation protocol were developed.

Once meeting the criteria, oro or nasogastric tube was removed to facilitate post

extubation nasal NIV. The patient was then extubated directly to NIV on assist/control

800 to 1500 ml, rate 10-14/min in ambient air. The NIV was provided via a combination

of nasal, oro-nasal, and mouth piece interfaces. Assisted CPF, CPF obtained by

abdominal thrust following air stacking, were measured within 3 hours as the patient

received full volume-cycled NIV support. Patients kept 15 mm angled mouth pieces

accessible and weaned themselves, when possible, by taking fewer and fewer intermittent

positive pressure ventilations as tolerated. Diurnal nasal NIV was used for those who

could not secure the mouth piece. They used nasal or oronasal interfaces for night time

ventilation. For episodes of SpO2<95%: ventilator positive inspiratory pressure (PIP),

interface or tubing air leakage, CO2 retention, ventilator settings, and MAC were

considered. Patients were then taught air stacking and manually assisted coughing. Then

assisted CPF were measured.

The therapists, nurses, and in particular, the family and personal care attendants

provided MAC via oro-nasal interfaces up to every 30 min until SpO2 no longer dipped

below 95% and the patients felt clear of secretions. In 7 cases, post-extubation oral

intake was considered unsafe so open modified Stamm gastrostomies were performed

under local anesthesia using NIV without complication.

Data were reported on 157 consecutive “unweanable” patients, 25 with SMA, 20

with DMD, 16 with ALS, 51 with other NMDs, 17 with spinal cord injury, and 11 with

polio. Eighty-three who refused tracheostomies were transferred from other hospitals.

They could not pass spontaneous breathing trials before or after extubation. Once SpO2

was maintained >95% in ambient air they were extubated to continuous NIV and

aggressive MAC. Extubation success was defined as not requiring re-intubation during

the hospitalization. Before hospitalization 96 (61%) patients had no experience with

NIV, 41 (26%) used it part-time, and 20 (13%) were continuously NIV dependent. First

attempt protocol extubation success rate was 95% (149 patients). All 98 extubation

attempts on patients with assisted CPF > 160 L/m were successful. Six of 8 patients who

initially failed extubation succeeded on subsequent attempts, so only two bular ALS

paitents with no measurable assisted CPF underwent tracheotomy. (36)

For Decanulation of Unweanable Patients In 1996 we reported the decanulation of 50 unweanable patients with neuromuscular weakness. (3) Earlier, in 1990 and 1991 we and others reported the routine decanulation of high level traumatic spinal cord injured patients to NIV.(23,28) The principles of decanulating unweanable are essentially the same as those for

extubation. Any ventilator dependent patient whose bulbar-innervated musculature is

adequate such that saliva aspiration does not cause a continuous decrease in baseline

SpO2 is a candidate for decanulation to NIV. Patients with tracheostomy tubes who had

no VFBA with VCs of 250 ml or greater invariably developed VFBA following

decanulation. Most weaned to nocturnal-only NIV within 3 weeks of decanulation. Tube

removal also facilitated speech and swallowing. All decanulated patients preferred NIV

to tracheostomy ventilation for convenience, speech, swallowing, cosmesis, comfort,

safety, and preferred it overall. (37)

Respiratory Muscle Aids to Avert Respiratory Failure and Tracheostomy Read More »

Polio survivors’ perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities

Polio survivors’ perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities

 

Anita Atwal PhD MSC Dip COT,* Georgia Spiliotopoulou PhD MSc BSc (OT),† Caron Coleman MSc BSc (OT),‡ Kate Harding MSc (OT) BSc,§ Caroline Quirke MSc (OT) BSc,§ Nicole Smith MSc (OT) BSc,§ Zeina Osseiran MSc (OT) BSc,§ Nicola Plastow MSc BSc† and Lesley Wilson MSc BSc†

 

*Senior Lecturer, †Lecturer, ‡Post Graduate Student and §Former Post Graduate Student, Division of Occupational Therapy, School of Health Sciences and Social Care, Brunel University, Uxbridge, UK

 

Correspondence Anita Atwal Senior Lecturer

 

Division of Occupational Therapy School of Health Sciences and Social Care

 

Brunel University Kingston Lane

 

Uxbridge UB8 3PH UK

 

E-mail: anita.atwal@brunel.ac.uk

 

Accepted for publication

 

20 September 2013

 

Keywords: interventions, participation, polio, quality of life

 

Abstract

 

Introduction The term ‘post-polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life.

 

Aim To gain an in-depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.

 

Method Six focus groups were conducted with 51 participants from two regions in England. Data were audio-taped and analysed using thematic analysis.

 

Results Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health-care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.

 

Conclusion It is suggested that health-care professionals should consider factors which influence happiness and implement a personcentred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health-care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.

 

© 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd., 18, pp.715–726 715

 

This is an open access article under the terms of the Creative Commons Attribution License,

 

which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

 

doi: 10.1111/hex.12152

 

Introduction and Background

 

Poliomyelitis (polio) occurs as a result of infection by the polio virus, which usually enters the environment in the faeces of someone who is infected. Persons with non-paralytic polio usually make a recovery, whilst those with paralytic polio may experience some form of longterm paralysis. In the 1950s, a vaccine was developed. However, despite its existence and availability, polio outbreaks are still experienced in many developing countries.1 Whilst it has been eliminated in most European countries, people with polio are experiencing a new range of symptoms 40–60 years after recovering from paralytic polio. This condition is known as post-polio syndrome (PPS). It is estimated that 80% of those with polio will experience PPS symptoms. The aetiology for the development of PPS is not clearly known or even fully accepted but the symptoms of PPS include joint and muscle pain, new muscle atrophy, increased muscular fatigability, general fatigue, cold intolerance and bulbar symptoms.2,3 Consequently, polio survivors can feel that they have been disabled for the second time.4

 

Quality of life has become a pre-eminent goal of rehabilitation and a key outcome measure in ascertaining the effectiveness of interventions and rehabilitation programmes. Indeed, maintaining or enhancing quality of life is the ultimate goals of all health-care professional interventions. Determining the impact of polio on quality of life is central to evaluating treatment efficacy from a service user perspective. A stringent understanding of a patient’s quality of life can offer important information regarding the social and personal consequences of disease progression.5,6 The physical aspects of PPS have been found to impact upon participation in activities relating to work, leisure social and personal relationships.7–11 Conversely, some studies suggest that polio survivors felt that they had lived a satisfactory life despite problems associated with PPS and polio.12,13 A contributing factor to this aspect of managing well could be related

 

to the personality of the people who participated in the research since as children polio survivors were encouraged to be active and engage with society.8 This has led to the term ‘polio personality’ which is often characterized by over achievement, a strong will to fit in and live a perfectly adequate life.14

 

The differences in these findings could be related to the type of research methods that were used. Within the polio literature, most studies have used surveys and or match controlled trials as opposed to in-depth qualitative techniques to examine quality of life. This has resulted in fewer avenues for original participant responses, and they were also bound by predetermined definitions for important factors. Each study has used a different set of outcome measures. For instance, Ahlstrӧm and Karlsson8 use the quality of life profile which was devised using 120 qualitative interviews. No further information is given about the validity and reliability of the tool. Two other studies used a non-standardized survey.15,16 Atwal et al.16 analysed two qualitative questions from the survey, whereas Jacob and Shapira’s15 responses were focused exclusively on activities that had been pre-selected. Two studies10,16 used the Swedish Health-Related QOL Questionnaire (SWED-QUAL) which is based on selected measures and consists of 61 items that form 11 multi-item scales that are aspects of physical, mental, social and general health.

 

Currently, very little is known about the type of interventions that are used neither by people with poliomyelitis to facilitate their own participation in everyday activities, nor in particular those advocated by core rehabilitation professionals such as occupational therapists and physiotherapists. We conducted a search on MEDLINE (January 1990–April 2012) and found only one paper that evaluated the outcome of physiotherapy with polio survivors.17 No papers have evaluated occupational therapy, and no specific pharmacological treatments have been found to be beneficial for the treatment of PPS.18 However, despite the lack of evidence, current management is embedded within the management of lifestyle changes, use

 

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716 Polio survivors’ perceptions of quality of life and strategies participate in activities, A Atwal et al.

 

of proper orthotics and assistive devices, implementing a non-fatiguing exercise programme, use of physiotherapy and pacing physical activities to prevent muscle and joint overuse.3 There is a noticeable lack of research that has explored the effectiveness of interventions from the perspectives of service users. The notable exception is Larsson Lund and Lexell19 who aimed to describe and to improve understanding of how people with PPS experienced an interdisciplinary rehabilitation programme. Only 12 people evaluated the programme, but they reported that the rehabilitation programme caused a change in their lives and contributed to the development of new skills. Furthermore, they advocated self-management as an approach to health care. In addition, Davidson20 also evaluated a 9-day rehabilitation programme but did not collect qualitative data on the users perceptive. They did state that a qualitative study was planned to investigate the patient-reported benefits of attending the programme.

 

However, we could not find any evidence that this study had occurred. Moreover, Willen and Grimby21 found that from a service user perceptive, a programme of non-swimming dynamic exercises in heated water has a positive impact on individuals with late effects of polio. However, it was not included in the Cochrane review.18

 

This study aimed to gain an in-depth understanding of the meaning of quality of life for polio survivors, to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.

 

Method

 

To meet the research aims, a qualitative approach was taken and focus groups were chosen as the means of data collection for several reasons. Focus groups enable researchers to understand the perspectives and opinions of a particular group of people by capitalizing on the interaction that occurs in the group

 

setting.22,23 For some participants, this may be the first time they had discussed their quality of life and creating a sense of cohesiveness could facilitate people to volunteer information.24

 

Ethical approval was obtained from the University Research Ethics Committee. Six focus groups were conducted with persons with PPS. Four focus groups were held at a university in London. Two groups were held in Leicester at a community centre close to the city centre. Both venues had accessible parking and facilitate to meet the needs of wheelchair users. To ensure that participants who were working could participate, one focus group was run at the weekend. Travel expenses were provided, and all participants received a ten pound gift voucher.

 

The participants were branch members of the British Polio Fellowship. In total, 300 branch members were approached from the South East and 80 from Leicester. All names were randomly selected from the relevant branch lists. The south-east of London covers a wide geographical area including London, Surrey and Kent. Leicester is a city in the midlands which is both rural and industrial. A total of 51 people agreed to participate with 35 people attending the four focus groups in the south-east and 16 attending the two focus groups in Leicester. Each participant attended one focus group only so that the views of all 51 were captured. In our research, the number of participants in each group differed between each group; however, each focus group ranged in size from 7 to 11 participants which is consistent with the focus group literature.25,26 Table 1 displays the number of participants along with basic demographics on age and gender in each group from the south-east and Table 2 from Leicester:

 

The focus groups were audio-recorded which not appear to have a restrictive effect on participants in the group. Each group had a moderator, an assistant moderator and an observer, and the members of the research team were given a specific role. In addition, we monitored the group dynamics continuously throughout

 

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Polio survivors’ perceptions of quality of life and strategies participate in activities, A Atwal et al. 717

 

each focus group session and reflected and discussed them after each focus group. The research team were mindful of the need to facilitate the group but not in a manner which meant that the group was influenced by our own ideas or that we prevented from the group from voicing their own opinion. Hague 27 suggests that in a focus group, the facilitator’s voice should constitute between 5 and 10% of the whole transcript. The focus group structure from our research study is outlined in Table 3. The topic guide was used to facilitate discussion, but it was also flexible enough to allow participants to explore issues in depth and allow them to develop themes in their own way.

 

In our research study, we used thematic analysis of the data as suggested by Rabiee,28 initially based on group data as the unit of analysis as this is the most common form of analysis.25 Before analysing the transcripts, we discussed and reflected upon our own observations from our field notes and our thoughts about how the focus groups had operated. Four researchers worked together to analyse the transcripts and identify major themes and subthemes. We then met to discuss out interpretation. Disagreements were resolved by reaching consensus by jointly rereviewing the transcripts, listening to the audio recordings

 

and discussing the themes at length. The first step in analysis was to become familiar with the data, and this included listening to the focus group recording, reading and rereading of transcripts and field notes, and writing memos of initial ideas about the data.

 

We carefully ensured that our analysis was sensitive to the various type of interactions that occurred which could be emphatic and challenging, sharing personal experiences and/or talking about others, including humour. We observed that smaller groups ran more smoothly than the larger ones. This could be due to less time constraints which allowed for more extensive individual contributions. The group dynamics seemed to be more challenging in the larger group of 11 participants, where it was harder for more reserved people to participate and therefore some views might have been neglected. A few individuals dominated the conversation, whilst others fairly contributed and very few contributed little or nothing at all despite the facilitator’s effort to get views from everyone. Overall, it seems that participants shared a common focus and they were contributing with little encouragement from the facilitator. Personal narratives triggered the discussions and produced empathy and

 

Table 1 Demographic participants: South-East characteristics

Groups Number Gender

 

Mean age (range) in years

 

1 8 4 Male/4 Female 65.6 (56–78)

 

2 11 7 Male/4 Female 66.1 (58–80)

 

3 9 5 Male/4 Female 65.2 (60–78)

 

4 7 4 Male/3 Female 63.4 (55–73)

 

Table 2 Demographic characteristics on focus group participants: Leicester

 

Groups Number Gender

 

Mean age (range) in years

 

1 7 5 Male/2 Female 67.6 (59–78)

 

2 9 6 Male/3 Female 73.5 (61–90)

 

Table 3 Focus group structure

 

Introduction – explanation of the session and introduction

 

of participants

 

Discussion of the meaning of quality of life

 

Activity card sort – Use cards with different definitions of quality of life to prompt discussion about the subjective

 

meaning of the concept for the participants and the impact of polio and post-polio syndrome on their quality of life

 

Discussion regarding the types of strategies used to manage pain-, fatigue- and mobility-related issues. This was written on a whiteboard, and the participants will then discuss the effectiveness of the interventions

 

Discussion regarding the role of activities within the participants’ daily lives and how these impact on QOL, quality-of-life priorities and how they do/do not meet these priorities. What support will enable them to meet these priorities

 

End-session summary and conclusions

 

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718 Polio survivors’ perceptions of quality of life and strategies participate in activities, A Atwal et al.

 

engagement. As the sessions progressed, the participants acted more like members of a group. Sometimes the participants contributed knowledge in a frustrated and irritated way. That was mainly when they were referring to the health-care system. Participants were often addressing to other fellow participants to seek comfort or compare treatments or symptoms of the disease.

 

The second stage involved developing themes and sub themes. We systematically worked through the whole of the focus group transcript and labelled chunks of data with a word or phrase that best described the underlying meaning of the text. Data were coded by hand using the ‘long table’. This essentially meant cutting up the transcript and sticking similarly coded extracts together on flip chart paper. We then analysed the data at both a group and an individual level. The aim of this step was to review the initial codes generated with grouplevel data, using the individual-level data.

 

We first created a separate document for each participant, containing only their individual contribution. Then, we reviewed the grouplevel codes in each document to check they were an accurate interpretation for that participant. Finally, we searched across the individual-level data for new codes that were evident at an individual level, but were not identified in group-level analysis; we then searched for themes to identify the most prominent themes in the data set. We then reviewed our themes by confirming that the themes were a valid representation of the collective meaning expressed in the group and by ensuring that the themes worked in relation to the whole data set (focus group transcript, audio recording, field notes, memos, codes and their descriptors). In our research, we found that after the 6th focus group, no new issues arose, and thus, we perceived that we had reached data saturation.24

 

Findings

 

Four main themes with further subthemes emerged from the focus group analysis. These were meaning of quality of life, important

 

components of quality of life (accessible environments, social belonging and acceptance), knowledge and attitudes of health-care professionals, coping strategies (living with poliomyelitis, adjusting behaviour, alternative therapies) (see Table 4).

 

Meaning of quality of life

 

Most of participants in the study perceived that quality of life was impossible to universally define or objectively measure as it was ‘multidimensional’, and contributing factors were ‘different things for each individual.’ Indeed, some participants in focus group 1 concluded that quality of life could only be measured by asking the individual ‘if they had a good quality of life.’ Participants in each focus group disclosed their unique personal concept of the meaning of quality of life which were associated with ‘being independent,’ ‘feeling good physically and mentally,’ ‘being able to do what you want to do,’ ‘happiness’ and ‘pain free,’ ‘social support from family and friends’ and sufficient ‘heat to keep warm and food.’ Participants in focus group 1 stated that for them it was ‘having choice’, whilst for another participant it was ‘getting up in the morning and I can cycle my bicycle and I’m hoping to God that I can still do that and keep going’.

 

There were, however, differences between the groups. In focus group 3 and 4, there was the view that your own quality of life may be influenced by how you ‘bench mark your quality of

 

Table 4 Themes and subthemes identified through the data analysis

 

Theme one: Meaning of quality of life

 

Theme two: Important components of quality of life Accessible environments

 

Social belonging and acceptance Theme three: Knowledge and attitudes of

 

health-care professionals

 

Theme four: Coping strategies Living with poliomyelitis Adjusting behaviour Alternative therapies

 

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life with people who are disability free.’ Some participants in all of the focus groups emphasized the need of sufficient funds to enjoy a quality of life, whilst ‘Disabled people don’t have the income to be able to do exactly what they would like to do.’

 

Important components of quality of life

 

Accessible environments

 

Participants in all of the focus group perceived that an accessible built environment and the ability to get around was an essential component of quality of life:

 

You go into a shop, try and get around the shop and that’s another issue, cos they’ve got so many things in the way, that’s a different story, you can’t go shopping.

 

One participant from focus group 5 visited a pub to drink with his friends even though he was not able to access the toilets. In particular, a new mobility aid sometimes meant that access or valued occupations were stopped:

 

I think I’ve stopped socialising in the village much. I’m only in a little village and I can’t get into my head using the scooter in the village and the little village hall is just too far to walk there and to walk back.

 

Some of the participants were critical of access to the local swimming pool and or public libraries. One participant in particular reported how her confidence had been decreased gaining access into the swimming pool:

 

You know these steps down into the swimming pool, they have like pimples on them and stainless steel steps and I slipped through them and it put me right off going again. So I haven’t plucked up the courage but I’d like to go swimming.

 

Participants also expressed concerns about access onto public transport and encountered numerous problems related to getting on/off buses and tubes: ‘public transport to me is a bugbear, a really big bugbear.’ For some participants, their own home environments

 

influenced their quality of life in that they were unable to utilize mobility aids such as electric wheelchairs.

 

Another participant wanted a bath lift instead of a shower:

 

I want a bath with a bath lift but they insisted that I have a shower room, so now I have to have someone to help me with it. That type of thing, I’m sure that must affect a lot of people.

 

Some participants within the focus groups were positive about recent developments in London:

 

Certainly the built environment does have an influence on ones quality of life, I’m just thinking of some of the new buildings that have been designed.

 

Social belonging and acceptance

 

Participants in focus groups 3 and 4, 5, 6 believed that social belonging and acceptance were important for their quality of life:

 

Certainly quality of life is social belonging. I think it might be living as closely as we can to what everyone else in society is living. We’re not asking for anything over and above, just being able to live as closely as every citizen in the country, they can access everything, enjoy the facilities, engage in work, with people, just doing everything anyone else can do.

 

Society’s attitudes impacted on the lives of persons who attended all of the focus groups, and there was an expressed need to be accepted by members of society:

 

They fall into two groups. There are those that shove you out of the way, and I have been shoved out of the way sometimes, and there are those that will stand and hold the door for you for half an hour, you know?

 

Participants in focus group 3 spoke extensively about society’s attitude and disregard for people with disability:

 

Well there still is the element of ‘Does it take sugar?’ syndrome. I’ve be in a supermarket queues, and sacks of potatoes have been passed

 

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720 Polio survivors’ perceptions of quality of life and strategies participate in activities, A Atwal et al.

 

over my head, you know things like that, because you know they think you’re not in the queue they just seem to think that you are invisible. It does happen a lot when you’re in a wheelchair.

 

Some participants in focus groups 1 and 2 believed that it was ‘about fighting your corner in an able bodied world.’ Many of the participants discussed society’s reaction when they were diagnosed as having polio ‘My mum said people wouldn’t talk to them in pubs.’ Some participants also recalled challenges that they experienced at school. For some participants in focus groups 1 and 2, there was a sense of relishing their independence and doing the things that mattered to them. Polio survivors perceived that having polio as a child in the 1950s resulted in the participants developing personality traits such as ‘determination’, ‘optimism’, or ‘strong willed’, ‘bolshie’ ‘not asking for any compromises’ that helped them to succeed in life and become ‘survivors’:

 

I would not be victimised and it made me completely self reliant and not trusting of anybody. I’m still doing it even at 70; I still don’t trust other people because all my school life, for 15 years I was brought up not trusting anybody.

 

Knowledge and attitudes of health-care professionals

 

Health-care professionals were generally viewed negatively. One participant from focus group 5 stated ‘A physiotherapist was the first person I spoke to in the clinic and he very much dismissed me’, whilst another participant said, ‘Can I say that my doctors are not very accepting?’

 

Participants in all the focus groups perceived that it was rare for health-care professionals to research PPS and they were critical about their knowledge of PPS. Furthermore, in focus group 1, some participants avoided seeking medical support as an outcome of their negative experiences with professionals during the acute episode of polio and recent late onset of PPS. Participants in focus groups 3 and 4 expressed their frustration about time spent

 

educating health-care providers about polio: ‘Most of the anaesthetists wouldn’t know what to do if you just turned up in hospital.’ Many participants in these groups generally agree that polio is considered a ‘dead disease’ a thing of the past by health-care professionals because it has been eradicated and that this influences health-care professional’s attitude to understanding and treating people with polio.

 

The message from the participants in all 6 focus groups was similar: ‘they ought to listen to us rather than we listening to them.’ Another participant from focus group 5 stated that ‘professionals don’t take notice if you are disabled, they think you are dumb.’ One participant in focus group 6 was aware of what he needed, but this was not listened to as ‘professional people don’t like unqualified people telling them their own work.’

 

Thus, some of the participants in focus group 2 and 6 were critical of professionals for delivering treatments to the PPS population without knowing their effectiveness. There was also a sense that GPs did not know what to do and participants frequently experienced the response: ‘what do you expect me to do about it?’ Indeed, participants in all focus groups explained that they had received various treatments which had been ineffective and inappropriate:

 

And it is about trial and error with them because go away and take this and then a couple of years later you’ve got something else wrong with you because of the side effects.

 

Participants in focus group 3 perceived that standard tests are not capturing the necessary information to make an appropriate judgement about their symptoms. Participants in focus groups 5 and 6 perceived that their GPs were reluctant to refer them for scans or tests or physiotherapy. Although pain ‘all the time’ was reported by many of the participants in all of the focus groups, they perceived that the options to managing this pain were not ‘acceptable’ particularly in relation to medication. In some instances, participants reported that the GPs poor prescribing had severely impacted on their health and wellbeing:

 

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I was prescribed the wrong medication and one of the side effects was to get swelling, unexplained swelling. I recently went to the Doctor and I asked him what is the swelling for and he didn’t tell me and then I said look it’s because I had done some research and I found out. He couldn’t look me in my eyes at the time because he knew that he had given me wrong medication.

 

For some participants, there seems to be a desire to prove health-care professionals wrong:

 

I was told by the physiotherapist in the hospital that I would never, ever be able to use my arm again, and that made me so angry. At thirteen and a half I was absolutely furious, I wanted to punch her, and I have used my arm and I’ve had three children, three sons. I have not been able to carry them in my arm but I’ve done everything else for them. I’ve carried them in my left arm, and I have nothing to complain about.

 

Coping strategies

 

Living with poliomyelitis

 

Maintaining a positive mind by being positive was an essential strategy for participants in focus groups 1 and 2 to avoid low mood and or depression:

 

It’s also about you’ve got a choice, you’ve got choice in life. Every day, when you wake up, you can get up and say, ‘I’m depressed, I hate the world, I hate this….’ or you can just simply get up and take the more positive route. Which I think the majority of the people around this table do.

 

Participants in these groups reported that they sustained a positive outlook by not worrying about things they could not change or as one person said ‘the meaning of life is that it has to be lived.’ Humour was also used by some of the participants in focus groups 2, 5 and 6. Several focus group 1 participants agreed that they strived to achieve daily goals, in spite of low motivation. Some participants in focus group 3 were in agreement that it is difficult to stay positive after having PPS describing it as ‘unfair’ and ‘worse than the actual polio.’

 

For some participants in focus groups 3 and 4, pain was managed by ‘living with it’ or ‘simply getting on with it’ or as ‘mind over matter’ as ‘this pain isn’t going to kill us and it becomes just a nuisance.’ For other participants, pain is a ‘fact of life.’ However, for some participants, they appeared to regard as not managing the pain as failing as individuals ‘You blame yourself, you feel like, you should be stronger to face the pain in order to be able to do what you had in our diary. You really start picking holes in yourself.’ Some participants in focus group 2 reported that doing ‘the classic polio thing’, trying to ‘over achieve’ and ‘do too many things’ exacerbated PPS symptoms.

 

Adjusting behaviour

 

Many of the participants in all six focus group reported feeling fatigued and tired which impacted upon their participation in chosen occupations such as walking and shopping. Participants in all focus groups reported that increased fatigue often disrupted their plans which restricted their ability to engage in different social activities such as snooker or bridge.

 

However, some participants had now chosen to participate in less physical demanding activities like activities like egg decorating, dominoes league, quizzes, ceramics courses and TV, as these activities still offer a mental challenge but did not require much physical exertion.

 

Numerous individual strategies were used by the participants who often focused around having a routine or allowing extra time:

 

Well, I do find it difficult to do things more and more, so I have to compromise in a different sort of way. Even when I’m cooking, my oven is low and I’m in a small electric wheelchair so what I have to do is take the stuff out, use the elbow I know that sounds weird but I push the thing with my elbow to turn it and put it onto something and then lift it up, so I have to compromise with everything I do. I still do it but it takes me a long time and I have to be very careful.

 

Pacing was viewed as an important strategy in all six focus groups:

 

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722 Polio survivors’ perceptions of quality of life and strategies participate in activities, A Atwal et al.

 

When there are things to be done in the house be it of a practical nature or a paper nature, I use a method called “just a bite at a time.” The trouble is the “just a bites” never finish.

 

Alternative therapies

 

Participants in most focus groups had tried or still used different types of alternative therapies including acupuncture, reflexology, osteopathy and massage. In focus groups 3 and 4, there was disagreement about the effectiveness of acupuncture in managing fatigue. Participants in focus groups 5 and 6 had also tried transcutaneous electrical nerve stimulation (TENS) with differing degrees of success to manage pain and also hot baths and heat. Participants in focus group 2 felt that a limiting factor was that the health service in England does not pay for treatment which would benefit them. Most participants in focus groups 2, 3, 4, 5 and 6 perceived massage, hydrotherapy and acupuncture to be expensive, although highly effective. There was also the view from participants in focus groups 3 and 4 that money could buy you the best intervention:

 

when you have pain, like we all have and you want to feel better, if you haven’t got the money you put up with it.

 

Discussion

 

Our research is the first qualitative study to explore polio survivors perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities. Our research found that persons with PPS perceived that it is difficult to define quality of life as it was perceived as being subjective and multidimensional. This is acknowledged within the World Health Organization 29 definition of quality of life which is generally adopted by health-care providers and professionals. In addition, our research found that the terms used to describe quality of life are associated with that of happiness. This is a new finding and has not been reported elsewhere in the

 

polio literature. Happiness can be viewed as three components (enjoyment, satisfaction and excellence) which are all separate variable of happiness.30 Polio survivors described quality of life in relation to these components, for example. enjoyment, for example ‘feeling good physically and mentally’, ‘satisfaction’ being ‘able to do what you want to do’ excellence in relation to good quality activities ‘getting up in the morning and I can cycle my bicycle.’ Thus, for polio survivors, an open-ended question that incorporates the components of happiness may be more meaningful than an actual quality-of-life measure. Indeed, there has been much debate as to how happiness can be measured.31 Moreover, there was view by some that polio survivors should not be bench marking their quality of life with people who were ‘disability free.’ Therefore, studies that have used match controls to explore life satisfaction or fatigue with polio survivors (see7,32,33) may be perceived as having little value by polio survivors.

 

Our research has identified various barriers that impact upon a person’s quality of life and participation in everyday activities. We suggest that many of these factors are avoidable and could be resolved by health-care professionals and society. The first barrier is in relation to participation in chosen activities was in relation to environmental issues, and our research highlights their daily struggles with the physical environment. This in turn could result in polio survivors not having ‘equal access’. Inaccessible built environments impacted on polio survivors’ participation in participation in activities such as work13,34 and autonomy outdoors9,13 and participation in chosen social activities.16 Issues with transport have also been previously noted by Burger and Marincek9 and Atwal et al.16

 

Attitudes were another barrier which impacted on quality of life from both health care, societal, family and friends and professionals. It is surprising that there no explicit reference to carers even though some of the participants made some reference to the importance of friends.

 

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Societal attitude was another barrier to participation in activities. This is a new finding and has not been reported within the polio literature, although in disability research societal attitudes towards persons using wheelchairs are well documented.35,36 In addition child hood experiences of living with polio may account as to why polio survivors continued battle to be accepted within an able bodied world. This finding is supported by the work of Wenneberg and Ahlstrom12 and Hollingsworth et al.37 who report that as children polio survivors’ selfimage was damaged by being brutally exposed to other people’s prejudices about polio and disability. Indeed Yelnik and Laffont38 make similar observations after reflecting upon their own clinical experiences of managing patients with PPS. Thus, this may account as to why some polio survivor’s strategy to enable participation in chosen activities was simply to ‘get on with it’.

 

Our research supports previous research2,14,16 that health-care professionals did not understand and or have the knowledge to manage PPS and polio, although our research also suggests that mistrust between health-care professionals and patients appears to have developed over time which may have impacted on polio survivors seeking help. Similar findings have also been reported in a survey conducted by Calvert et al. 39 with people with rare longterm neurological conditions where a subsample of 40 patients with PPS was used. This study demonstrated that although some patients have used rehabilitative services, the care co-ordination needs further improvement to improve health-related quality of life. Polio survivors described instances where their symptoms had been ‘miss managed’; indeed, being ‘pain free’ was described within the definition of quality of life. Previous research has described pain as a factor impacting upon participation in activities.40,41 In other instances, polio survivors described instances when professionals did not ‘listen’. Further research is needed to explore how health-care professionals implement the concepts of patient-centred care and more importantly the need to explore

 

further the concept of patients being experts within their own fields.

 

Polio survivors in our study were able to clearly articulate their views about what would enhance their quality of life, particularly in relation to the treatments that are available. Our study found that many people with PPS have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life. This has not been reported in the previous literature; however, it must be noted that a Cochrane systematic review42 concluded that massage therapy may effectively manage non-specific lower back pain. Numerous strategies were used by polio survivors. In our research, some polio survivors had changed their lifestyle using diet, exercise, hydrotherapy and pacing (energy conservation). Whilst a Cochrane review found little evidence to support their use,18 a qualitative study by Larsson Lund and Lexell19 found that PPS participants found that energy conservation managed fatigue and reduced pain. In addition, some studies have reported the benefits of community-based aquatic exercise programmes for increasing quality of life.43

 

Limitations of the study

 

In our focus groups, we needed to ensure that carers did not contribute to the group and/or speak on behalf of group members. The composition of the group can impact upon the type and amount of interaction that occurs in the group and in some of the focus groups contained more men than women. It would have also been useful to have gathered information on the occupation and marital status of the participants, as this could have informed further the interpretation of the findings. It is suggested that researchers should ensure ‘commonality’ not diversity within focus groups.44 Our focus groups consisted of people with PPS; however, the way the symptoms have impacted upon an individual’s health and well-being varies from each individual. Moreover, as we wanted to be inclusive, we did not

 

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724 Polio survivors’ perceptions of quality of life and strategies participate in activities, A Atwal et al.

 

want to exclude anyone because of their gender, social or educational characteristics. We did, however, take some of these factors into account when we analysed the data.

 

Conclusion

 

The findings from our research suggest that it would be beneficial to allow individuals to select the dimensions that are of most concern which relate to their quality of life. Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. It is suggested that healthcare professionals should consider factors which influence happiness. Health-care providers and professionals need to ensure that they take a person centred approach with the views of the expert (polio survivor) being listened to. Our research has identified factors that influence quality of life, namely inaccessible environments, attitudes of health-care professionals and societal attitudes. These are resolvable, and any rehabilitation programme need to ensure that these issues are discussed and strategies out in place to enable participation in chosen activities. With regard to strategies used, we suggest that people with PPS should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.

 

Acknowledgement

 

We wish to acknowledge the British Polio Fellowship and Shirley Russell for her support in conducting the focus groups.

 

Sources of funding None.

 

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The Scottish Post Polio Network – Scottish Orthotic Conference Saturday 27 April 2013

The Scottish Post Polio Network – Scottish Orthotic Conference Saturday 27 April 2013

 

To provide a platform to enable Orthotists to share ideas and experiences, with the aim of reducing the incidence and costs occurring from unused and poorly fitting orthotic appliances. It is anticipated that this will lead to less pressure on the NHS orthotic and orthopaedic services, improve the service to the patient and reduce financial waste arising from unused appliances. It is envisaged that this one-day conference will generate interest and enthusiasm for regular exchange of information among orthotists, and that the benefits of the conference will be self-evident and will result in orthotists seeking to continue to exchange information for mutual benefit.

 

Scottish Post Polio Network will promote the conference through the British Association of Prosthetics and Orthotics and the Long Term Conditions Alliance Scotland, as it is recognised that although Post Polio is a specific problem the provision of orthotic appliances affects people with many other long term conditions.

 

Click here for video part 1 of 8 Click here for video part 2 of 8 Click here for video part 3 of 8 Click here for video part 4 of 8

 

Afternoon Session

 

Click here for video part 5 of 8 Click here for video part 6 of 8 Click here for video part 7 of 8 Click here for video part 8 of 8

 

Programme

 

Opening Mary Blackford (on behalf of Margo MacDonald) Introductory remarks Scottish Post Polio Network Chairperson

 

Chair Mr Malcolm Macnicol Consultant Orthopaedic Surgeon and past-President of the British Orthopaedic Association Facilitators Professor Nigel Thorp and Billy Fenwick

 

Speakers

 

Improving Services: “Turning the Oil Tanker”? Professor James Hutchison, Professor of Orthopaedics University of Aberdeen

 

Overview of Orthotic Services’s in Scotland Robbie Rooney, Orthotic Manager Lanarkshire

 

Case Studies compiled by Professor Nigel Thorp

 

The Patient’s Journey Q & A Session Lorna Duncan, Orthotic Service Manager Tayside

 

Recent Advances in Orthoses Elaine Figgins, Reader in Orthotics University of Strathclyde

 

Afternoon Session

 

The Future of Orthotic Service in Scotland Mr Alex Neil, Cabinet Secretary for Health & Wellbeing

 

Relevant Gait Analysis Data Professor Rami Abboud, Head of Department, Orthopaedic & Trauma Surgery, Director Institute of Motion Analysis & Research (IMAR)Tayside

 

Finance, Quality and Technology: Can we afford to improve the service? Chris Rowley, Orthotic Clinical Lead/Manager NHS Greater Glasgow & Clyde

 

Conclusion Mr Malcolm Macnicol Consultant Orthopaedic Surgeon and past-President of the British Orthopaedic Association

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