Patient Empowerment

The public, armed with useful non-jargon information, is rightly demanding a say in how healthcare is organised and delivered. Historically the patient has been expected to follow blindly the doctor’s advice with little input or participation in his/her treatment. The ability of patients to act as consumers and therefore participate in their own treatment has been severely hampered by medical secrecy and arrogance. The patient, on the whole, was not seen as having the training or intellect to understand complex medical issues and was therefore treated as a passenger and not a participant in their treatment. This lack of participation by the patient was caused in large part by a lack of appropriate information on which to make informed decisions.

The almost universal access to the internet has turned a bright light into what had been relatively dark corners. Patients, armed with useful non-jargon information, are becoming consumers of healthcare. They are insisting on doctors being measured, the publishing of meaningful outcome data, and access to healthcare based on their needs and not services based around what the health workers want.

Patients need to have a platform from which to make informed decisions and demand that they are participants and not passengers in their treatment. They can begin to measure around data points that are meaningful to them the quality of the treatment they receive and, most importantly, begin to shape the health service from a patient’s and not an employee perspective.

In France, (where the health system frequently ranks at the top of the World Health Organisation’s best providers) 40 per cent of health provision is supplied by the private sector. The French enjoy choice, clean hospitals and friendly staff, not to mention some of the highest quality outcomes in the world. France has embraced an agnostic system where providers are chosen and survive based on ability and quality of outcomes and not idealism.

For too long, patients have been allowed to suffer while high-level discussions take place around the politics of health.  France and others have proven that the discussion must centre around the patient and their needs. Most importantly, the patient must be at the centre of that debate and not be kept on its periphery.

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The above is the opinion of Ken Anderson, former commercial director general, Department of Health, UK. He is singing my song. The best and the most efficient health systems in other countries are based on universal provision where the money follows the patient. With further health cuts promised in the present economic downturn, we have never been more in need of new leadership and a new direction for our health service.

Source: Irish Times online.

It ain’t over yet!

Those of you who have been reading this blog for far too long 😉 will remember that I had a run-in with a certain consultant doctor over his arrogant behaviour. I have consulted more specialists than I care to remember but never before had I come across such blatant arrogance. On principle, I refused to pay for the consultation when leaving the doctor’s surgery and instead wrote to the doctor the following day, to express my dissatisfaction. Three weeks later, I received a bullying phone call from the doctor himself which did nothing to improve our stand-off. Last week, he sent me another bill for the outstanding account. It gave me a great laugh.

I decided not to waste my time writing to this doctor again. Instead, I picked up the phone and spoke to his receptionist. She sounded very young and innocent so I was very gentle. I told her politely that I had already stated in writing why I was unhappy with the charge and then added, that I hoped her employer didn’t treat his staff as rudely as he did his patients. She apologised profusely and promised to look into the error!

Now, I’m dying to know what will happen next. Will the receptionist relay my message to her employer and face the consequences or will she decide to quietly ‘lose’ the bill? Will the doctor try to threaten me with legal action? I suppose I should feel sorry for him. He must have hit hard times in this economic downturn. The consultation took place in 2007.

Watch this space!

Test Results

Doctor: I have some bad news and some very bad news.

Patient: Well, give me the bad news first.

Doctor: The lab called with your test results. They said you have 24 hours to live.

Patient: 24 HOURS! That’s terrible!  WHAT could be WORSE?  What’s the VERY BAD news?

Doctor: I’ve been trying to reach you since yesterday.

You know, this joke isn’t actually as improbable as it sounds.

This time last year, my 89 year old widowed mother-in-law was admitted to a nursing home having become increasingly withdrawn and difficult to nurse at home. On admission, a routine blood sample was taken by her doctor and sent off to the nearest hospital for analysis.

The following day, the hospital laboratory rang to enquire if the patient was still alive! Her kidney function was apparently so bad, the laboratory thought that the patient would not have survived the night. The family were told to prepare for the worst and we all gathered to say our last goodbyes.

Now one year on, and my mother-in-law is looking forward to celebrating her 90th birthday in the nursing home. Her kidney function is normal for her age.

You have to wonder if this ‘miraculous’ recovery is thanks to lots of TLC at the nursing home or maybe, just maybe, it could have been a laboratory error?

Will it hurt, Doc?

A woman goes to her doctor who verifies that she is pregnant. This is her first pregnancy. The doctor asks her if she has any questions.

She replies, “Well, I’m a little worried about the pain. How much will childbirth hurt?”

The doctor answered, “Well, that varies from woman to woman and pregnancy to pregnancy and besides, it’s difficult to describe pain.”

“I know, but can’t you give me some idea?,” she asks.

“Grab your upper lip and pull it out a little…”

“Like this?”

“A little more…”

“Like this?”

“No. A little more…”

“Like this?”

“Yes. Does that hurt?”

“A little bit.”

“Now stretch it over your head!”

A Terrible Blunder

Last April a young boy was admitted to Crumlin Children’s Hospital in Dublin, to undergo surgery to have his defective right kidney removed. It later emerged that his healthy left kidney had been removed in error. Today a report has been released following an independent investigation into the tragedy and it’s revealed a shocking catalogue of contributing factors which led to the mistake.  It was described as “an accident waiting to happen”.

When news first broke of this medical blunder, it seemed incredulous that such a terrible mistake could occur at the country’s leading children’s hospital. It has now transpired that the consultant general surgeon who recommended the surgery, mistakenly listed the wrong kidney on the surgical request form.  When the child was admitted to the hospital, a junior doctor filled out a consent form for the parents to sign without referring to the clinical notes on the child and again the wrong kidney was listed for removal. The child’s operation was carried out by a senior surgical registrar who had not examined the child on the ward before he was brought to theatre. This surgeon proceeded to remove a perfectly healthy left kidney leaving the unfortunate child with one poorly functioning right kidney.

The investigation carried out by experts at London’s renowned Great Ormond Street Hospital, outlined ten contributing factors to the botched surgery. These included delays in filing hard copy x-ray reports in the medical records, patients being regularly admitted outside of working hours and the heavy workload of doctors at the hospital. The report found that there was no policy in place at the hospital to mark the site of the procedure and that the surgeon didn’t have access to scans for reference at the time of the surgery. It also found that there was no fail-safe system to ensure a patient having surgery had their case discussed by a range of experts. It said the operation was carried out by a paediatric surgeon who hadn’t met the patient beforehand and when the blunder became obvious, it was too late to do anything about it. The report made eight recommendations to ensure the mistake is not repeated, including:

* The hospital should formally monitor the hours junior doctors work. Overwork was stated as a contributory factor in the error over the consent form. It’s a well-known fact that junior doctors are expected to work horrendously long hours resulting in serious sleep deprivation and it’s inevitable that mistakes will occur if their workload is not properly regulated or supervised.

* Surgeons should introduce team briefings at the outset of each theatre list to discuss patients. The surgeons at Crumlin Hospital have an enormous workload and are working under huge pressure to reduce long waiting lists.

* Radiology and x-ray systems should be reviewed. No up-to-date scan was available on the child for reference during the surgery.

* Consent processes should be revised. A hospital spokesperson admitted that the family had repeatedly raised concerns and questioned if the correct kidney was being removed, up to and including the time of handover to theatre.

This tragic case will undoubtedly raise concerns for the parents of any child who is presently awaiting surgery. The report has clearly outlined the need for extra safety measures to be implemented for children undergoing surgery. It has also raised the issue of doctors working under too much pressure in a hospital system that is stretched to the limits. Thankfully, the hospital appears to have handled the situation correctly as it’s taken full responsibility for the tragic error and has offered an apology. The child’s parents are happy for the child to continue to receive treatment at the hospital and have requested anonymity. One can only hope that the child will be a suitable recipient for a kidney transplant in the future and that lessons will have been learnt to prevent a tragedy like this ever occurring again.

One size fits all?

Have you ever been a medical mystery? I’m talking about those patients whose symptoms fail to fall neatly into the diagnostic criteria for a particular illness. You go to your doctor feeling really ill, your doctor listens carefully to your woes and recommends a battery of tests to help with the diagnosis. Several days later, your doctor rings to tell you that all your tests have come back normal. You’re still feeling lousy and you’re meant to be pleased with this news?

I’ve found an interesting new blog written by A Country Doctor (based in the USA) which provides a refreshing look at illness. Today he discusses how the labelling of a patient can affect a patient’s response to an illness.

“Labels are good if they help you understand what’s going on, and bad if they lock you into some sort of fixed category where you either don’t believe you can get out or, perhaps worse, start to feel comfortable and liberated from your own responsibility for your life and health.”

Receiving a diagnosis is never any fun but sometimes it’s almost preferable to not knowing what’s wrong. There’s little to recommend about being a medical mystery. The patient is suffering from very real symptoms yet nobody seems to be able to explain why and it’s not unusual for them to get to a stage where they begin to doubt their own sanity. Doctors these days have a large array of tests available to them to assist with a diagnosis. It seems that the days are gone when doctors rely on their own diagnostic skills to make a judgement. Today, tests are often ordered before an opinion is given. If the tests fail to show any abnormality, doctors generally take great pride in reassuring the patient that all is normal. However, from the patient’s perspective all is not normal if they continue to suffer from the original symptoms and are no closer to receiving help with the problem.

As the Country Doctor says “Somehow in the last generation of doctors, we seem to have lost our ability, or perhaps our perceived right, to give patients advice about their health; only if we diagnose them with a disease, or pre-disease, do we have something to tell them.”

Having been a medical puzzle myself for many years, I can assure you that it was a huge relief to finally receive a diagnosis. The missing piece of the jigsaw was found and suddenly my medical history made sense. My ‘label’ has not caused me to become fixated with illness, rather it has helped me to understand my condition more fully and to take responsibility for my own health. When I consult a medical doctor, it’s because I want to find out what it is wrong and receive advice on how best to deal with the symptoms. I think that doctors would do well to remember that not all patients have symptoms that fit the label and very often, these are the patients who most need their help.

Doctors Are People Too

It always makes me smile when I walk into a doctors’ waiting room and find everyone sitting in nervous silence. I find myself wanting to shout “Hey! it’s okay, the doctor won’t bite” but instead I usually end up talking about something mundane like the weather. Anything to break that awful tension in the room.

I’ve never been able to understand why people treat doctors with such reverence. Yes, they are highly qualified professionals who are deserving of our respect but they are also real people who in the main, enjoy having a good rapport with their patients. Think about it – if you had a job where everyone who came to see you was so petrified that they could barely speak, you’d soon tire of having to reassure them before making any progress. A visit to a doctor can be an intimidating experience but only if the patient allows this to happen. I’ve always found it useful to employ humour when appropriate. It’s a great tool for breaking down barriers and getting to the point. It’s important to establish a 2-way conversation so that the consultation is a shared process. Remember, your doctor learns a great deal from what you tell them. If something is said to me that doesn’t quite make sense, I will always question it and if necessary, argue the point. I find that doctors respect when you take an interest and work with them to find the best way forward. The patients who sit in terrified silence throughout a consultation, are really missing out. Of course, bad news is never easy for anyone involved but if a good rapport has been established, then it’s likely to be a little easier to digest.

Doctors are real people with real lives just like you and I. Most of them are under huge day to day pressure, with their busy working lives constantly vying for more time at the cost of their personal lives. They do make mistakes sometimes but they’re only human after all. Show them you care and they’ll respect you for it.

One of the many joys of blogging for me has been the discovery of some great medical blogs written by doctors, nurses and medical students. My favourite ones are on my blogroll where you’ll find medics writing and sharing their everyday lives with anyone who cares to join in. It’s good to see patients, like myself, join the debate as I believe that we have a lot to learn from one another, for the benefit of all.

I’ll finish here by saying that there’s a new blogger on the block who’s making waves with great ideas to sort out the mess within the HSE. Dr. Jane Doe has joined the team of Irish doctors and nurses over at Two Weeks on a Trolley, and she makes for very interesting reading. Our Minister for Health would do well to take note.

All I want is…

It’s reached that time of year again when big money has to be found to renew my health insurance policy. I freely admit that this has proved to be a good investment over the years as I have a complicated medical history which has resulted in higher than average expenses. I’m happy to pay out good money for health insurance but I would much prefer to contribute to a scheme that funds an efficiently-run single tier, not-for-profit health service rather than contribute to what is fast becoming an apartheid approach to healthcare in Ireland.

The Irish health service is set to be radically privatised over coming years. Tax incentives introduced by our government, are leading to the rapid development of private hospitals throughout the state. Some of these hospitals will be co-located on publicly owned land thus duplicating the need for highly trained staff in the one location. Privately insured patients will soon have every luxury imaginable available to them while public patients will continue to suffer in our poorly funded health service. Furthermore, the revised contract of employment for hospital consultants is set to complicate the system even more. Some of the consultants will be allowed to work with public patients only, others can opt to engage in limited private practice on the public hospital campus or in the co-located hospitals while a third type will work in the public system but will also treat patients outside the public hospital campus. It strikes me that this system of healthcare will benefit the consultants and the private insurance companies but does little to improve conditions for public patients. It’s no harm to bear in mind that every citizen in this state is entitled to a bed in a public hospital but with the chaos in existence, more than 50 percent of the population have opted to take-out private health insurance. With the escalation of private hospitals, it’s inevitable that a sharp increase in premiums will follow and more and more people will be forced to drop their private insurance. If the underfunded public sector cannot cope with it’s present burden, how on earth is it going to cope with a further influx from the private sector?

Patients shouldn’t have to negotiate a minefield of options when choosing health insurance. I don’t want to be forced to buy into a 2-tier health system where the type of care offered depends on the type of insurance held. When I become ill, all I want is to be guaranteed a bed in a clean, efficiently-run hospital which will provide good care when it’s needed. Public patients are presently being denied this basic right. I’m prepared to pay for this right but I believe that it should be available to everyone via a universal system of health insurance. What’s good enough for one, should be good enough for all. When I’m sick, I don’t want or need an á la carte menu. I want doctors who will treat me because I am ill, not because of the insurance I hold or because they can make a fast buck by offering me a bed in a high tech facility. The present plans for the reform of our health service are totally absurd. Is it really too much to ask for some common sense to be applied before it’s too late?

The real McCoy

If you enjoy fly-on-the-wall medical documentaries, then hold on to your seat as another series of Surgeons is about to begin. Following on from the success of the series produced by Mint Productions last year, this three-part observational documentary series returns to capture the real lives of both the practitioners and the patients in our hospitals. Prepare to be amazed.

The first programme looks at organ transplant surgery and the work of Oscar Traynor in St. Vincent’s Hospital and Freddie Wood in the Mater Hospital, in Dublin. The series also looks at some of the issues facing the health service today: waiting lists, public versus private practice, centres of excellence and hospital politics.

This is no docudrama. It’s the real thing and it provides an excellent insight into what goes on in our hospitals. The series uncovers some powerful human stories at the cutting edge of Irish medicine. If you’re squeamish, this may not be for you. Otherwise, I highly recommend it.

Thursday 22 May on RTÉ 1 @ 10.15pm. Don’t miss it!

Strange Cures

Some people will go to any lengths to rid themselves of hiccups. In the west of Ireland, a favourite remedy for hiccups is to distract the patient by getting them to visualise a green cow grazing in a blue field. One doctor in the US has found a unique way to terminate intractable hiccups.

“Hiccups can be a distressing symptom, especially when it lasts for some time. The term intractable is used for hiccups that have lasted for a month or more. Hiccups occur when the diaphragm goes into spasm, followed by a quick and noisy closing of the glottis. The diaphragm is the large muscle (shaped like and upturned sauces) that separates the chest from the abdomen; the glottis is the opening between the vocal cords that closes when we are eating to stop food entering the lungs. There is some evidence for the existence of a “hiccup centre” in the lower part of the brain. The vagus nerve, which controls the opening and closing of the glottis, is linked to it, as is the phrenic nerve which carries signals to and from the diaphragm.

Most bouts of hiccups have no obvious cause. They may be triggered by a combination of laughing, eating, drinking and talking. Occasionally, hot or irritating food is the culprit. Hiccups also occur post-operatively, probably due to irritation of the diaphragm, but they usually settle quickly. Persistent hiccups raises the possibility of a serious cause, such as brain tumour or stroke interfering directly with the hiccup centre in the brain.

No single drug treatment has been found to be effective, so a plethora of home and medical remedies have emerged over time. Probably the most popular is holding your breath while counting to 10 or breathing into a brown paper bag, both of which raise the level of carbon dioxide in the blood, which helps stop hiccups.

Stimulating the vagus nerve also helps. This is achieved by drinking water quickly or by swallowing dry bread or crushed ice. Gently pulling on the tongue or rubbing the eyeballs also introduces vagal stimulation. The pharyngeal nerve can be stimulated by drinking from the wrong side of the cup.”

A doctor in the US came up with an unusual solution when a patient of his did not respond to standard therapies. Aiming to stimulate the vagus nerve, he stuck his (gloved) finger up the patient’s rectum and gave the patient a digital rectal massage. To the doctor’s delight, the hiccups stopped and the doctor went on to publish a research paper on his cure, winning an award in the process.

I dunno what you think about this but I know I’d rather stick to my own home remedies. You’ve got to feel sorry for this guy though.

With thanks to Dr. Muiris Houston at The Irish Times for his informative article on hiccups.