Tuesday, December 11, 2012

Patients and pharmacists feeling the pinch

Reliance on community pharmacists for health advice and help meeting the expense of medicines is an ever-growing phenomenon around the country as the recession vice tightens and many struggle to afford basic healthcare.
More than 90% of pharmacists have attested to a huge surge in the number of people seeking help for minor health ailments, advice and support on obesity and smoking cessation, and heath screening services, since the start of the recession.
Pharmacists say they are also increasingly offering flexible payment options to patients, who are finding it hard to meet the cost of private prescriptions. Many fear that cash-strapped patients may cut back or stop taking their medication altogether.
Of course, the pharmacy sector itself is not immune to the ongoing recession and ever-shrinking income. Not only have community pharmacists reported that the bottom has fallen out of front-of-counter sales in recent times, they are also coping with massive direct and indirect reductions to their payments from the State.
The Irish Pharmacy Union (IPU) has recorded job losses of well over 1,600 staff in the pharmacy sector in less than two years, with a rising number of small independent pharmacies closing their doors permanently.
“We’re all being squeezed, that’s the reality,” says John Gleeson, a pharmacist on the outskirts of Limerick city. “Most definitely I’m seeing more and more people who are not able to afford their medication, including people with chronic conditions such as asthma or heart disease, who are not eligible for the medical card. My reaction to that, and every pharmacist’s reaction to that, is total horror.”
John tries to accommodate people in financial difficulty with easy payment plans but inevitably there are people who simply do not have the money.
“We try to help our customers in whatever way we can so that they will be able to get the medicine they obviously need. We can set up weekly instalments, or give them a bit of credit to tide them over. We do everything in our power to make sure that people still receive their medication, and yes, sometimes that means we don’t get paid,” he adds.
John runs a suburban city pharmacy, two miles outside Limerick, in a predominantly middle class area, which he says has been financially hard-hit by the recession. Over the past two years he has noticed a significant and worrying shift in purchasing patterns at his pharmacy that reflect the difficulties being experienced in the local community.
“There certainly has been an increase in people coming to me for their OTC cold and flu remedies because they’re self-treating; it’s the cheapest option. I’m also seeing less prescription business, particularly less one-off prescription business, and it’s not just because they can’t afford the price of the tablets, they often can’t afford the cost of visiting their doctor.
“The type of business we did see a lot of, such as children’s antibiotics and antibiotics for adults, has really declined. This can be a positive change in some ways because we were probably over using antibiotics, but for certain people who really need this medication but can’t afford to see a doctor let alone buy the tables, this is a very worrying development.”
He expresses concern that some of his regular medical card customers have had their cards withdrawn this year.
“We are seeing more people being refused the medical cards that had them in the past, that’s certainly an impact of the recession. Losing a medical card has a major impact, particularly if someone is on a lot of medication. Suddenly they’re going from paying maybe €10 per month up to €132 a month. That’s a huge jump, and I’ve had some patient confide in me their fears that they won’t be able to afford they medicine.
“Then of course, there are people in the same dire situation who you don’t even get to talk to. They just don’t come in. They’re too embarrassed.”
Kathy Maher, a pharmacist in Duleek, Co Meath, tells Modern Medicine of Ireland that she has also noticed an increasing number of people struggling to afford the medication they need.
“This is actually a huge trend, people are cutting back on their medicines or trying to make them stretch,” she confirms. “I’ve noticed this to be particularly stark for people still awaiting their medical cards. For example, they would come into me with their regular prescription but say they’ll just take the blood pressure tablets and go without the cholesterol tablets until they get their medical card.
“But if there is a long delay in issuing the card, and we’ve seen that it can be a very drawn out process, this can be very dangerous. You can’t have patients not take their medicines so we try to help them. It can get expensive for us, though, when you’re giving out that amount of tablets free of charge, but people just don’t have the money to give.”
Kathy also highlights the upsurge in requests for health advice. “We’re inundated with requests for free advice because people are holding off going to their doctor. I’m not complaining about that, it’s what we’re here for and that is certainly one of our key roles, but it can be difficult sometimes when you tell them that your advice for that particular health query is to see their GP. People are crest fallen, ‘please don’t tell me that,’ they say, because they simply don’t have the money to spend.”
Patients are not the only ones feeling the pain of the economic downturn. Independent pharmacies across the country are suffering too, faced with leaner budgets, streamlined staffs, and more State cuts in the pipeline.
In Ireland, the State pays for approx 80% of all medicines, amounting to an annual cost of almost €2 billion – one of the highest State pharmaceutical bills in Europe. The pharmacy sector has already contributed nearly €400 million in savings to the Exchequer through reductions in payments introduced under the Financial Emergency Measures in the Public Interest (FEMPI) Act in 2009.
With the new Health (Pricing and Supply of Medical Goods) Bill likely to pass into law by the year’s end – heralding a new system of generic substitution and reference pricing - the Department of Health hopes to shave €50 million off the annual drugs bill. A further cut in the cost of medicines will be realised in a new agreement between the Irish Pharmaceutical Healthcare Association (IPHA) and the Department of Health, which is at an advanced stage.
Pharmacists are finding themselves caught between the proverbial rock and hard place as they welcome savings to patients and the exchequer while also lamenting the damaging impact cuts are having on profitability, stability and viability of the community pharmacy sector.
“It’s very difficult, both as a small business owner who has already been forced to close one business, and as a pharmacist who wants to help her patients to the best of her ability. You want to do the very best for your patients, but you’re feeling the pinch every which way,” admits Kathy, who is Vice-President of the IPU.
In February this year, Kathy had to shut the doors of her pharmacy in the small village of Donore, Co Meath, after a little over three and a half years in business.
“My husband, who is also a pharmacist, and I bought the pharmacy in Duleek six years ago, and we opened a pharmacy in July 2008 in Donore village, but after so many cuts to our income, and having curtailed services to the point that I worked there without a wage, we just couldn’t maintain the business. That means an entire community now has no pharmacy service because it was the only pharmacy in that area.”
Her IPU colleague Rory O’Donnell has had a similar unfortunate experience. In 2006, he purchased a pharmacy in Letterkenny, Co Donegal, but was forced to close this year.
“During the past couple of years business declined drastically at a rate of knots, despite every effort to keep it on the road. It was difficult, particularly for my patients and my staff,” he recalls.
His pharmacy in Gweedore, Co Donegal is largely a GMS business, in that 90% of income is from medical card patients. “The direct cuts imposed since 2009, which have impacted the State schemes, have hit us very hard here,” Rory explains.
“The biggest threat to Irish pharmacy in terms of finance is the ongoing cuts that have devastated pharmacy, there’s no question about it. Pharmacy has survived but many are hanging on by their fingernails.
“Front-of-counter sales have also declined severely, and recent CSO figures would back this up; front of counter pharmacy sales have fallen probably more rapidly than most of the retail sector. That side of the business is evaporating no questions about it.”
Kathy agrees that sales in OTC medicines, cosmetics, toiletries and other luxury goods have dropped drastically.
“When we bought the business, the split might have been 60% medical card and 40% front-of-shop. Our latest reconciliation a few months ago showed that income from front-of-shop is now only 9%.”
A recent IPU Business Trends Survey revealed that six out of 10 pharmacy owners say the business environment is getting worse, and almost a third of pharmacists report that costs have increased, due to hikes in energy costs, waste charges, commercial rates and rents.
As President of the IPU, Rory says the challenge now is to ensure that community pharmacy is enabled to diversify and deliver new services, which requires a more strategic approach to be agreed for the delivery of community based healthcare.
“We need to extend the roles of pharmacists as part of the primary care network, introducing initiatives such as medicines use reviews, repeat dispensing, and switching more medicines from prescription only to pharmacy only, so that we can treat our patients in a more timely manner. These initiatives will benefit pharmacy going forward,” he stresses.
It appears the notion of pharmacy as a recession-proof profession has gone the way of bank job security and property portfolios. As John points out, when the country isn’t doing well, pharmacy will feel the impact.
“We are very heavily dependent on the Government who is our biggest customer, and when your biggest customer is the Government, how could you be recession proof?”

Pharmacists can help with depression

The Irish have a hard time opening up when they’re feeling down. Depression is still a difficult subject for people to talk about in this country, with one in five (20%) admitting in a national survey that they are embarrassed to discuss depression with others, including healthcare professionals.
Depression is a common and serious illness but fortunately the majority of sufferers, even those with the most severe depression, can get better with treatment. Medications, psychotherapies, lifestyle modifications and other methods can effectively treat people with depression. However, far too many people with a depressive illness will never ask for help.
A recent nationwide campaign is encouraging people who are struggling with depression to seek advice and support from their local pharmacists. The Lean on Me Pharmacy initiative - a follow on from the Lean On Me depression awareness campaign - aims to reinforce the pharmacists as an important point of contact and support for people with depression.
Research has confirmed that community pharmacists can play an integral and multifarious role in tackling depression, such as identifying those suffering from a depressive illness, enhancing management strategies by providing patient education, assisting in monitoring treatment effectiveness, improving medication adherence and identifying and managing side effects.
While most people are very comfortable talking to pharmacists about physical conditions like colds, headaches and minor injuries, they may not necessarily associate pharmacists as source of support for depression. Only 35% of people surveyed in Ireland are aware that a pharmacist is able to advise about depression.
Lean on Me Pharmacy Campaign
The new Lean on Me Pharmacy campaign is the first step in strengthening this association and making the Irish public aware of the availability and accessibility of pharmacists as health experts who can offer a helping hand to people with depression.
“Community pharmacists are healthcare professionals who are just as qualified to support people living with depression as they are to advise on other chronic physical ailments like diabetes and high blood pressure. While research shows a significant number of people do feel they can approach their pharmacist about depression, we want to reach out to everyone who may have depression, which is why the Irish Pharmacy Union (IPU) has joined the Lean on Me campaign,” said Rory O’Donnell, IPU President, at the launch of the campaign in May.
About 500 pharmacists in Ireland participated in certified training courses around the country, under the Lean on Me Pharmacy initiative. These refresher courses offered pharmacists an overview of medical depression and the benefits of optimising anti-depressant therapy, as well as new engagement tools and how they can offer support for customers living with depression.
“Many people still have difficulty talking about their depression,” said Ultan Molloy, proprietor pharmacist at HealthWest Community Pharmacy in Ballindine, Co Mayo, who took part in the training course. “Figures from a national survey published at the time of the Lean on Me Pharmacy launch were quite astounding to me. Four in ten people said they would not want to know if a friend or loved one was suffering from depression, and a similar number said they would be embarrassed to talk about their depression with others, including with a health professional.
“That’s very unfortunate. I hope community pharmacists can help make a difference and change that situation,” he told Modern Medicine of Ireland.
Ultan’s pharmacy in Mayo has earned a widespread reputation for it’s friendly approach to customer service and last year was a finalist in the national JCI friendly business awards.
“We’re a community pharmacy in a rural area so our customer care is as much about having the chat as it is about dispensing medicines. Given the stigma that still exists around mental health, if we want people to open up about their depression, trust is key. They need to trust the person they’re talking to and they need to see that you are a competent professional, someone who can in fact guide them,” he pointed out.
Ultan Molloy and staff at HealthWest Community Pharmacy
“I believe pharmacists in general have very engaging and positive relationships with their patrons. We’re not just a drug delivery system. We’re health professionals and we’re available for long hours at the counter or in our consultation room to have a chat to someone if they need that extra time.
“The more we help people to trust and open up to us, the more we can engage them and ensure that they are getting the most appropriate treatment for their symptoms. It may start off with a bit of a chat then gradually they can open up and tell us what is going on with them. When they are in that zone of feeling comfortable and feeling cared for, they are more likely to confide in you.”
International primary care surveys show that only 50% of people with depression seek help: of those who do, only half had depression diagnosed and adequately treated. By expanding community pharmacist involvement in the identification of patients with depression and in their care, health authorities hope to maximise the impact health professionals make on the lives of those who suffer from the disease.
For patients with a diagnosis of depression, community pharmacists can help improve outcomes at every step of the patients' treatment by provide patients with realistic expectations, recognising drug interactions, managing side effects, and recommend alternate treatment options.
The importance of not stopping medication too soon is a message that can also be reinforced by a community pharmacist. Non-compliance with antidepressant medication is a serious issue. Patients with depression are three times more likely not to take their medications as compared to the general population.
“The pharmacist is a critical point of contact really. With the majority of anti depressants that are most popularly prescribed, the patient will only see an initial effect after two to three weeks, and for that interim period the patient may be a little up and down. So it’s important that they have positive expectations and a belief in the benefits and efficacy of the treatment, and that they don’t abandon their medication before it has been given the opportunity to work,” advised Ultan.
The Lean on Me Pharmacy survey confirmed that the majority (65%) of people would accept advice from a pharmacist if advised to continue on antidepressants, which underscores the relationship of trust that already exists between the pharmacist and patient.
Community pharmacists are also an important point of information and practical advice, Ultan emphasised. “We can provide educational material around the nature of their illness and encourage people to talk things over with their friends or a self help group. Some dietary supplements have also been shown to have benefit, such as Omega-3 and vitamin B complex, which can be good in terms of reducing stress and has been shown to improve mental functioning.
“A healthy balanced diet and sufficient exercise is also vital; addressing some relatively minor lifestyle changes an have a significant impact on how one functions day to day”
“In my mind, drug therapy is great and it has a very important role but whatever the issue was at the start of drug therapy, if someone wants to address their mental health issues then they will need to strive to address any underlying issues when they are feeling up to it,” Ultan suggested.  “One can externalise and say ‘the medicine will fix me’, but I would be encouraging people to look at how they can address the problem as themselves as much possible through lifestyle modification and counselling - basically empowering them to put strategies in place and giving them the opportunity, while they’re on the drug therapy, to tackle the root causes of their depression.  There are of course unfortunately some cases where patients will need to stay on medication over a long term, and we’re here of course to make ourselves available and support them. Patients can touch base with us and with their GP periodically until we get to an appropriate effective dose.”
Community pharmacists also play an important role in recognising cases of undiagnosed depression. Ultan remarked that, in his experience, it is quite common for a person to not even realise that he or she is suffering from depression.
“It has happened countless times; someone will come in looking for something to help them with a minor complaint, such as sleeplessness or they have stomach problems. They may not be aware that the cause is actually that they may be depressed.
“With experience and engagement you can prompt people to bring the real issue into their consciousness, which can help in terms of acknowledging that there is a problem. Simple things, such as asking ‘do you feel like you’re under pressure at the moment?’ or ‘it sounds to me like you’re not performing the best’.
“For example, someone comes in with sleeping problems and during our chat I might tease out why they’re not sleeping and maybe identify other symptoms of depression.
We can then talk these things through with our patients and refer them on to their GP for diagnosis and prescribed treatment where appropriate
For some people, admitting that they’re feeling depressed can be very difficult, people may see it as a weakness or something they have done wrong or done to themselves. Whereas, the message we need to be getting across is if you have a chest infection you get an antibiotic, if your mental health is off kilter then you get that sorted out as well, it’s just as important, if not more important,” he stressed.
“The main message for pharmacists is that we need to get out from behind the counter and start engaging with patients. That’s where it is at, in my mind. We’re not a drug delivery service, we’re healthcare professionals. It’s up to members of the professional to start connecting with customers in a real way, get to know them and see how you can help them, and give them that added value.”

Thursday, September 20, 2012

Placebo - an underrated treatment?

If you thought the placebo effect was all in the mind, think again.
A placebo is traditionally defined as a harmless pill, medicine, or procedure prescribed more for the psychological benefit to the patient than for any physiological effect or in research, a substance that has no therapeutic effect, used as a control in testing new drugs.
For most of us, the potency of sugar pills is synonymous with the power of positive thinking; it works because you believe you’re taking a real drug. But new research continues to rattle this assumption and peel away further layers to the inner workings and potential therapeutic applications of the ‘powerful placebo’.
Most recently, researchers at Harvard Medical School’s Osher Research Center and Beth Israel Deaconess Medical Center (BIDMC) found that placebos work even when administered without 'deception'.
It is broadly understood that to prescribe a placebo openly as an actual treatment would risk undermining the effect. But data on placebos are so compelling that Harvard associate professor of medicine Ted Kaptchuk teamed up with colleagues at BIDMC to explore whether or not the power of placebos can be harnessed honestly and respectfully.
To do this, 80 patients suffering from irritable bowel syndrome (IBS) were divided into two groups: one group, the controls, received no treatment, while the other group received a regimen of placebos – honestly described as 'like sugar pills' – which they were instructed to take twice daily.
“Not only did we make it absolutely clear that these pills had no active ingredient and were made from inert substances, but we actually had ‘placebo’ printed on the bottle,” says Prof Kaptchuk. “We told the patients that they didn't have to even believe in the placebo effect. Just take the pills.”
For a three-week period, the patients were monitored. By the end of the trial, nearly twice as many patients treated with the placebo reported adequate symptom relief as compared to the control group (59% versus 35%).
Also, on other outcome measures, patients taking the placebo doubled their rates of improvement to a degree roughly equivalent to the effects of the most powerful IBS medications.
This particular aspect of their discovery has been mirrored in other studies and is proving quietly disconcerting for pharmaceutical companies who pour billions into developing lucrative new drugs only to find that, on occasion, the placebo group in their clinical trials fared just as well or even better than the active arm.
For a range of ailments, from pain and nausea to depression and Parkinson’s disease, placebos – whether sugar pills, saline injections, or sham surgery – have often produced results that rival those of standard therapies.
But, of course, there are limits to even the strongest placebo effect. No simulation could set a broken arm or clear a blocked artery. It can ease the discomfort of chemotherapy, but it won’t stop the growth of tumours.
For the most part, placebos appear to affect symptoms rather than underlying diseases, although sometimes, as in the case of depression or irritable bowel syndrome, there’s no meaningful distinction between the two.
For more than a decade, scientists have made tremendous strides in demonstrating the biological truth of the placebo effect. Numerous studies have shown that these inert pills can trigger verifiable changes in the body. The enduring search now is to uncover the precise mechanisms that elicit placebo-related effects, and to understand how these can be reliably harnessed.
Advances in image processing are aiding investigators in this quest. A study, published in Science in 2009, utilised functional magnetic resonance imaging (MRI) to scan the spinal cords of 15 healthy volunteers, homing in on an area called the dorsal horn, which transmits pain signals coming up through the spinal cord into the pain-related areas in the brain.
During the scan, the volunteers received laser 'pinpricks' to their hands. The volunteers were told that a pain-relief cream had been applied to one of their hands and a 'control' placebo cream to the other. But unknown to the volunteers, an identical 'inactive' control cream was administered to both hands.
When people believed that they had received the active cream, they reported feeling 25% less pain and showed significantly reduced activity in the spinal cord pathway that processes pain.
Previously, it has been shown that placebo causes the release of natural opioids in areas of the brain involved in pain control. 
“We’ve shown that psychological factors can influence pain at the earliest stage of the central nervous system, in a similar way to drugs like morphine,” said Falk Eippert, of the University Medical Centre Hamburg-Eppendorf, who led the study.
A world authority in this field, Fabrizio Benedetti, professor of clinical and applied physiology at the University of Turin Medical School, has devoted more than 15 years to mapping many of the neurobiological mechanisms of the placebo effect, uncovering a broad range of the body’s self-healing responses.
He says that placebo-activated opioids, for example, not only relieve pain, they also modulate heart rate and respiration. The neurotransmitter dopamine, when triggered by placebo treatment, helps improve motor function in Parkinson's patients. Mechanisms like these can elevate mood, sharpen cognitive ability, alleviate digestive disorders, relieve insomnia, and limit the secretion of stress-related hormones like insulin and cortisol.
Impressed by such findings, some researchers and clinicians hope to import them somehow from bench to bedside – adding placebo, in a structured way, to the doctor’s medical repertoire. But any attempt to harness the placebo effect immediately runs into problems. To present a dummy pill as real medicine would be, by most standards, to lie.
And yet, research has shown that many doctors incorporate the placebo into their therapeutic arsenal. For example, a 2004 study in the British Medical Journal found that 60% of doctors in Israel used placebos in their medical practice, most commonly to ‘fend off’ requests for unjustified medications or to calm a patient.
So if the medical profession see little harm in prescribing placebos, should they should be more widely available to the general public? After all, they are the ideal medicine: placebos typically have no side effects, are essentially free, and have clinical research to back up their beneficial effects.
Actually, a variety of placebo cures are available on the internet. One of the most popular is Obecalp, natural cherry-flavoured chewable tablets for children. Launched in 2008, Obecalp claims to be the first standardised, branded and pharmaceutical grade placebo on the market. Its name is ‘placebo’ spelled backwards.
The idea is a seductive one – to harness the placebo effect to comfort children who are a little unwell, without risking side-effects. They are designed for when 'children need a little more than a kiss to make it go away'.
However, Obecalp has received mixed reactions from the medical profession. One issue is that the pills will be used without medical supervision, creating a small risk that parents may delay bringing children with a serious illness to their GP because symptoms are masked for a while by the placebo effect.
Dr Clare Gerada, vice-chair of the Royal College of General Practitioners, described the pill as 'medicalising love'. Douglas Kamerow, associate editor of the British Medical Journal, highlighted a more serious threat. He pointed out in his editorial that by giving children a tablet for every ailment, parents may encourage them to think that popping a pill is the be-all and end-all of health.
“Sure, there are kids who end up wanting a colourful plaster for every ache and injury, but I have never seen an adult addicted to plasters. I have seen many adults who want a pill for every ill.”
But perhaps the real source of the placebo’s effect is the medical care that goes along with it, that the practice of medicine and the trappings of medical care is providing tangible healing influences.
For example, a study published in the British Medical Journal in 2008 described experiments conducted on patients with irritable bowel syndrome. Two groups underwent sham acupuncture, while a third remained on a waiting list. The patients receiving the sham treatment were divided into two subgroups – the first was treated in a friendly, empathetic way and the second group had their care delivered in a businesslike fashion.
None of the three groups had received ‘real’ treatment, yet investigators reported sharply different results.
After three weeks, 28% of patients on the waiting list reported 'adequate relief,' compared with 44% in the group treated impersonally, and fully 62% in the group with caring doctors. This last figure is comparable to rates of improvement from a drug now commonly taken for the illness, without the drug’s potentially severe side-effects.
The lead investigator was Harvard Medical School’s Prof Ted Kaptchuk. In this research, and his 2010 IBS study mentioned earlier, he emphasised that, rather than mere positive thinking contributing to the placebo effect, there may be significant benefit to the actual performance of the medical treatment ritual.
If this is true, then the takeaway message is not necessarily that doctors should be prescribing more fake pills but that as much thought should go into the medication selected as to the context in which it’s given.
Prof Anne Harrington
The definition of placebo effect has now broadened beyond dosing with inert pills to include questions about whether healing is still in part an ‘art’, and issues such as how the relationship between doctors and patients affects treatment outcomes.
At its best, that doctor-patient ritual activates positive expectations, triggers associations with past healing experiences, and eases distress in ways that can alleviate suffering.
Prof Anne Harrington, professor of the history of science at Harvard University and author of the book The Placebo Effect: An Interdisciplinary Exploration, suggests that a better way to think about the placebo effect would be as “the sum total of effects”.
Part of that experience might be going into a waiting room where the patient sees lots of certificates on the wall, and where a confident doctor walks in with a white coat that designates him as a professional expert. “All of these things produce the placebo effect,” she says.
Perhaps the secret of the placebo is rooted in the patient-doctor relationship. It may be about how people respond to symbols and about the intangible parts of medicine, such as the inherent capacity of human beings for self-healing.

Wednesday, September 19, 2012

Journey to the other side

The indomitable spirit of Dr Kate Granger
I am surprised how often our conversation is lifted by her laughter. The spontaneous cheerful bursts are unexpected. Dr Kate Granger is terminally ill with a rare and highly aggressive type of sarcoma, yet somehow she is at ease with the prospect of her impending mortality. It is a bleak reality she has had only months to absorb but her adjustment is extraordinarily pragmatic. It’s quite inspiring.

Kate was diagnosed, out of the blue, with Desmoplastic Small Round Cell Tumour (DSRCT) in 2011. She was 29 years old, happily married, with a hectic career she loved as a third year Elderly Medicine Registrar working at Pinderfields General Hospital in Yorkshire.

She describes her cancer journey as horrendous and convoluted. On the advice of an Irishman - one of her bosses, Dr Frank Phelan, a Consultant Physician at Pinderfields - Kate wrote her story down, initially for therapeutic benefit and to fill the countless insomniac nights in hospital. But her personal diary has evolved into a poignant book, The Other Side, which has sold well over 3,000 copies since it’s publication in February 2012 and raised £20,000 for the Yorkshire Cancer Centre.

The Other Side is an emotive, uncompromisingly honest and often harrowing account of a doctor's struggle as a patient coming to terms with a devastating diagnosis, her difficult journey with an incurable disease, and her ultimate decision on New Year’s Day to cease treatment in order to retain some quality of life for the time she has left.

Kate’s book is targeted at health professionals, offering them a rare insight into a patient’s plight through the eyes of a fellow medic.

“I’m a doctor and I love being a doctor but, having experienced the other side of the healthcare system as a patient, I think some of us could learn about how to be good doctors by remembering to be good human beings. I know this experience has made me a better doctor,” says Kate.

“I want doctors to stop and think about what it is really like to be a patient. How our behaviours can have such a massive impact, whether positive or negative, on the people we care for. Little tiny things like when someone holds your hand, or sits beside you, or is really kind to you, or if someone is dismissive of you.

“I hope that, by reading the book, healthcare professionals will have a better understanding and empathy for their patients, and from the reviews I have been receiving I think I may have achieved this,” she says happily, speaking from her home in Wakefield.

At a vineyard the day before Kate was admitted to hospital
Kate was on summer holidays in California with her husband Chris in July 2011 when she started to feel unwell. Within days the niggling right-sided backache turned into a searing pain and she was hospitalised.

An ultrasound identified bilateral hydronephrposis and her creatinine was 485. A subsequent CT revealed several soft tissue masses in her abdomen and pelvis. Kate’s fear was realised: ‘Oh my God, it really is cancer.’

She was in renal failure and in constant pain. Ureteric stents were successfully inserted on both sides by a dashing young surgeon, who Kate sensed was more than a little smug about the whole situation: ‘It feels as though he is giving himself a virtual pat on the back for being such a great surgeon.’ 

She realised of course that this was a temporary solution to her problems and that months of investigation and treatment were to follow.

Back in the UK, she was admitted for a pelvic ultrasound but the following morning she noticed that MRI is written next to her name on the ward white board. She knew that it is a completely appropriate investigation but was fuming that no one had bothered to discuss this with her, not simply out of professional courtesy but because she is absolutely petrified of confined spaces.

She concealed her claustrophobia, not wanting to be a nuisance, but when the MRI technicians finally returned to the scanning room to fetch her, she was a total wreck. The paper sheet was stuck to her with sweat and she dared not open her eyes despite their reassurances that it was over.

At the time, Kate wondered how older people cope with MRI scans, especially if they have some cognitive impairment, and she silently vowed to only ever request really clinically essential scans if she ever returned to work.

The third day of admission brought her an unfortunate example of doctor’s communication skills at their worst under the most painful of circumstances. That morning, a junior doctor who had obviously ‘pulled the short straw’ entered her room and without much preamble blurted out: ‘your MRI shows evidence of spread’.

“I was so devastated,” Kate recalls, speaking so softly her words are almost inaudible. “A gynaecology SHO came to see me and he basically told me out of the blue that I have metastatic disease. There was no groundwork prepared, no exploring baseline knowledge and concerns; there was no warning shot. I wasn’t even given the option of having someone with me. I’m sitting there in a bed, in pain, alone, questioning my own mortality and being told that I have metastatic cancer. I was 29 years old and it hit me like a steam train. Then he left me alone in the room and I never saw him again. That could have been handled so much better.”

Kate also expressed disappointment that her consultant didn’t visit her until the following day. “I still think that the concept of professional courtesy should exist. I’m not saying that as a doctor you should get special treatment, but if you can’t even get special treatment and you’re in the profession, it makes you wonder about the average patient.”

The severe pain Kate experienced in the Sates returned and she feared that her stents were failing. Her creatinine level increased and she was transferred to a specialist cancer centre where she was amazed at the difference in the quality of both medical and nursing care.

Kate, ill in hospital
Kate was scheduled for an urgent nephrostomy. “Being a doctor and having experience of things before they happen to you can be really difficult. I’d seen an elderly man have a nephrostomy when I was a student and it was horrendous; the poor man had been screaming. And there I was on my way to having my nephrostomy done and all I was thinking about was him. This is going to happen to me, I thought. Sometimes ignorance is bliss,” she laughs.

Later that day, a ‘lovely consultant’ dropped by to see her. In the book, she remarked on his ‘very gentle personality’ and that he broke all the infection control rules by sitting on the edge of her bed for a chat.

“I’m not sure anybody has actually ever proven sitting on a patient’s bed is such a horrendous thing to do and I certainly used to do it all the time. Sometimes being closer to your patient to comfort them when they need you is more important than microbiology,” Kate observed.

Within days it became apparent that the nephrostomy had failed and she was scheduled for a return trip to the Interventional Radiology Room – or ‘torture chamber’ as she called it - to have another inserted. Afterwards, Kate wrote about the determined efforts of a nurse, who was distressed seeing Kate in constant pain, to make her comfortable before her shift ended. She inserted a subcutaneous cannula and proceeded to give Kate alfentanil every half hour until she was relaxed and pain free.

“It takes five injections. I cannot believe her effort and dedication, but I am so thankful that for the first time in what seems like forever I can now actually close my eyes and sleep peacefully.”

The respite was short lived, however, as Kate soon has need for the third time in five days to revisit the ‘torture chamber’ for reinsertion of the troublesome nephrostomy and to remove her infected stents. Fortunately, the new nephrostomy was a success and her renal function normalised.

Her doctors had thought Kate was suffering from ovarian cancer but a series of tests confirmed that her cancer fit into the ‘small round blue cell tumours’ – a rare, diverse set of cancers including various sarcomas and lymphomas that usually affect children and teenagers.

Kate jokes that she felt strangely disappointed that despite having a very rare tumour it did not have a cooler name. “Let’s face it not much imagination has gone into ‘small round blue cell tumour’!” she laughs.

She remembers fondly how a Teenage and Young Adult (TYA) consultant, who dropped by to discuss her diagnosis and treatment plan, pulled up a chair, sat at her bedside and explained everything at the right level with amazingly adept communication skills. On the subject of palliative chemotherapy, Kate became emotional and he instinctively reached out to hold her hand.

“This touch is extremely comforting as inside the distress and turmoil of having to decide between spending months of what life I have left undergoing chemotherapy with all its side effects and simply walking away from the hospital to die properly sets in,” she wrote.

Kate was started on ‘baby doses’ of chemotherapy but this changed once a definitive diagnosis was established – Kate had Desmoplastic Small Round Cell Tumour (DSRCT). “This news hit me hard and I was not ready to hear it,” she admits. “All that I had read about DSRCT was that it was an extremely aggressive tumour with poor response to chemotherapy and dismal survival rates.”

The consultant gently questioned if she wanted to go ahead with more chemotherapy given the fact that it was very much a palliative situation now with no hope of cure. She decided to give ‘proper chemotherapy’ a try, more for Chris and her family than for herself.

Each of her five cycles of chemotherapy was accompanied by severe side effects, including neutropaenic sepsis. But just as she was verging on abandoning treatment, test results revealed significant reduction in the size of the pelvic masses and improvement in the bone disease. This gave her the strength to persist.

A friend’s husband - an interventional radiology consultant – suggested getting metal ureteral stents inserted as a means of losing the nephrostomies permanently and Kate took this up with her doctors.
“Lots of people have asked me if I think in some respects it was easier for me being a doctor because I know what I want and I can advocate for myself. Well, this was definitely an example where that was the case.

“After ten weeks with bilateral nephrostomies, the metal ureteral stents changed my life but I had to fight quite hard with my doctors to convince them that this would work for me. They were reserved about the idea and not very receptive initially but I nagged and nagged and eventually I got them in. If I’d been a regular patient I might not even have known about this option and I might not have been able to fight my corner quite as much,” she tells Scope.

Kate’s fifth cycle of chemotherapy ended on Christmas Eve but soon after she developed more complications and once again she found her self in hospital with an excruciating abdominal pain. She had been weighing up the burden of treatment versus the benefits for a number of cycles but that New Year’s day as she lay in her hospital bed, she decided to stop treatment.

Chris and Kate renewing their wedding vows
“I don’t know how long I have left, I don’t want to know, but I’m determined to be positive. I’ve started back at work part time and I have my bucket list. Chris and I renewed our wedding vows in April and we’ve gone to Paris and London and Spain. I’m just doing lots of really nice things and sort of dragging everyone along with me on this positivity trip,” Kate chuckles to herself.

Of late, life for Kate has taken an exciting and unexpected turn. When The Other Side was self-published in February, the initial modest run of 100 copies sold out in three days. Another, larger print was ordered. But then her book was plugged on the enormously popular ‘Medical Registrar’ Facebook page and ever since Kate has been caught up in a blitz of media interviews and invitations to address medical colleagues at workshops and meetings.

She has been inundated with overwhelming support from medics and patients alike, for her remarkable courage as much as her book. Kate decided to write a sequel, The Bright Side, which is her story about living with a terminal diagnosis, the struggle to maintain positivity, and how her experiences as a patient have changed her practice as a doctor. The Bright Side was launched on Sunday 16, September.

With so much to live for, Kate is returning to hospital for more chemotherapy – albeit a lower dose on an outpatient basis.

“Despite me thinking I am all sorted and can get on with living until I die, I don’t think I’m as ready to died as I thought I was,” she confides. “I can only do my best to keep smiling and keep positive. I’m not ready to give up yet.”

The Other Side and The Bright Side can be purchased online at http://theothersidestory.co.uk/ and is also available to download for the Kindle / iPad from amazon.com
Keep up to date with Kate’s news on her Facebook page:

Monday, September 10, 2012

The surgeon-major and the Coachford poisoning case

After the untimely death of his first wife, the hasty remarriage of Dr Philip Cross to his pretty young governess raised eyebrows in 19th-century Cork. The subsequent exhumation of the late Mrs Cross revealed evidence of poisoning that led to the death sentence for the doctor, writes Eimear Vize 

Famed Victorian hangman James Berry executed more than 130 criminals, but the figure that returned to haunt his dreams most often was Dr Philip Henry Eustace Cross. The Cork doctor, who had slowly murdered his wife so he could wed the pretty young governess, was one of the bravest men he ever executed, he said.
“When you read of a man walking firmly to the scaffold, it is nonsense. Some walk, some are carried. Of all the men I hanged Dr Cross was the only one who walked firmly,” Berry recalled.
“He told his attendances that he did not fear death, for he had met it face to face more than once on the battlefield. He died unmoved, without a word,” the hangman wrote in his 1892 autobiography, My Experiences as an Executioner.
However stoical a figure Dr Cross cut as he strode to the noose, he was nevertheless a murderer. He was tried and found guilty of poisoning his wife by slow, excruciating degrees, and has the dubious celebrity of being the last person executed in Cork County Gaol.
It was a deliberate, cruel and cowardly act of betrayal. The mother of his six children was the only obstacle between him and his 20-year-old lover, Miss Effie Skinner – a former governess at their home, Shandy Hall, in Dripsey, County Cork. And Dr Cross, a highly regarded retired British army doctor 63 years of age, plotted his wife’s demise and watched for weeks, under the guise of her carer, as she was gradually poisoned by arsenic. He was the only person with her when she died. He would later tell a friend, “she died screaming.” The case was described by the prosecuting counsel at Dr Cross’s trial as “the most cruel and bloodthirsty of the century”.
Victorian court reporter William Roughead recounted the scandalous case in his book, The Murderer’s Companion. The chapter on Dr Cross is aptly titled ‘The Shadow on Shandy Hall – What love cost an old man’. In it Roughead expresses surprise at how this “qualified slayer bungled this homicide”. The incompetence of a skilled practitioner such as Dr Cross really passes belief, he said. “The inexpertness of the expert is inexplicable.”
But then Philip Cross was often described as “very reckless” and, as a lad preparing for his profession, many stories were told of his pranks at the paternal abode, Shandy Hall. A sketch of the house shows an unpretentious dwelling of two storeys, standing amid trees in the garden, the front railings of which bordered the road to Coachford.
As Surgeon-Major Cross, he was for many years attached to the 53rd regiment, and served in the Crimea, Canada and other foreign stations. He does not appear to have been popular in the army, although it is recorded that his courage was indomitable, and that with fearless bravery he repeatedly saved the lives of others at the peril of his own.
In 1869, at the age of 45, Dr Cross wooed and won, despite the opposition of her parents, a well-born and attractive young English lady, Miss Mary Laura Marriott, who was 18 years his junior. The couple married in London on August 17 at St James’s Church, Piccadilly, and after a term of service overseas, the doctor retired and they began their life partnership at Shandy Hall some two miles from Cork.

Shandy Hall, Dripsey

When Mrs Cross’s father died in the 1870s, Dr Cross succeeded to her fortune of £5,000, which allowed him to comfortably occupy his time as a gentleman farmer. He was also an avid hunter. This led to trouble with the neighbouring farmers and the doctor suffered the current local penalty of popular disapproval: boycotting. But he was not a man to take things lying down, as Roughead recalled: “attacked with stones by roughs at a coursing meeting, he made such a good use of his riding whip – without which he seldom appeared in public – that his assailants were soon glad to beat a retreat.” Some may not have liked him but, in general, Dr Cross was highly regarded as an intelligent and well-bred gentleman who could claim friendships in the grandest social circles.
Life for the doctor and his wife was relatively uneventful, punctuated every year or so with the birth of another of their six children. That was, until the arrival of the bewitching young governess, Miss Effie Skinner. Dr Cross had never been a ladies’ man, and often expressed his aversion to what he termed ‘chattering females’. So for a time, everything went on smoothly in the doctor’s house. But it was the calm that preceded the storm.
Dr Leonard Parry observed in his 1928 book, Some Famous Medical Trials, which details the ‘Coachford Poisoning Case’, that Dr Cross had gradually become aware of Miss Skinner’s “many favourable points”. It was the summer of 1886, shortly after she had started work at Shandy Hall.
Dr Parry wrote: “He recognised her beauty, her good nature, her capability in the management of the home and the children, her cheerfulness and good temper; all these completely overwhelmed him, and an ardent desire for possession took hold of him. His infatuation became noticeable to his wife, who spoke to him on the subject, but, needless to say, unavailingly. One day he startled the governess, who had never given him the slightest encouragement, by suddenly seizing her in his arms and passionately kissing her on the lips.”
Miss Skinner fled from him but apparently never mentioned the incident to Mrs Cross. “And from this fact the doctor drew quite erroneous conclusions,” said Dr Parry.
But Mrs Cross could not fail to perceive the change in her husband’s behaviour and challenged him on the subject. He resented her interference and denied that his interest in the girl was other than paternal. For three months the wife’s suspicions continued to grow stronger, until finally she insisted that the governess should be dismissed, which, despite the doctor’s vigorous protests, was done. The subject remained a sore one and the domestic atmosphere was thundery.
According to Dr Perry, Dr Cross convinced Miss Skinner that she had to leave the house due to the “ridiculous and unreasonable jealousy” of his wife. The governess believed him. She went to live in Dublin and a correspondence began between them. Dr Cross paid frequent visits to the capital, and it was not long before they were staying nights together in a Dublin hotel under assumed names. “But this did not satisfy Dr Cross. He wanted Miss Skinner for his real wife. His dislike for his lawful partner grew intense but he was anxious to maintain his good name and position, and he determined to devise some means of getting rid of her without arousing any suspicion or scandal. The method he adopted was so silly and clumsy that it is difficult to imagine that an educated and clever man could have been so foolish. Detection was inevitable,” remarked Dr Perry.
The court case, as reported in the British Medical Journal of December 24, 1887, heard that Dr Cross had bought a pound of arsenic in 1886 “for sheep dipping”. It was from this supply, it is believed, that he began to dispense tiny quantities into his wife’s food. One of the prosecution’s witnesses, Miss Jefferson, an old school friend of Mrs Cross, visited her frequently at Shandy Hall. An avid diarist, her detailed accounts of Mrs Cross’s dramatically diminishing health proved invaluable in the case against her murdering husband.

In her diary she had recorded the whole story of Mrs Cross’s illness, with all the symptoms of slow poisoning by arsenic. “While Miss Jefferson was there Mrs Cross had an attack of ‘spasms of the heart’, with vomiting, cramps and diarrhoea,” the court was told. “This began on May 10 and it continued until her death. Her eyes were inflamed and irritated. Dr Cross was the only person to attend his wife. He said she was suffering from some form of bilious fever, and he hinted at typhoid.”
To save appearance, Dr Cross called in a medical cousin, who obligingly concurred with the doctor’s diagnosis: a bilious attack. To others, Dr Cross represented her case as heart disease.
Early in the morning of Thursday, June 2, Mrs Cross died in agony with only her husband present. One of the maids was awakened by her mistress’s “terrible cries”. Dr Cross remained alone with the dead body throughout the night. In the morning he announced to the maids, with callous levity, his loss: “Get up girls: the Missus is gone since past one last night.” He gave no explanation of the four minutes of screaming in the night.
Dr Cross certified the death typhoid fever and buried his wife with “indecent haste” at 6am on Saturday, June 4. He gave her a paltry five-guinea funeral, and in attendance by her graveside was a publican, the driver of the hearse and the devious widower Dr Cross.
Less than a fortnight later he married Miss Skinner. Perhaps he would have gotten away with murder were it not for the suspicious speed with which he replaced his recently deceased wife.
He was reunited with his lover in London less than a week after the funeral – the court heard that a hotel bill for two people was found on Dr Cross covering dates from June 10-13 – and they were married on June 17 at St James’s Church, Piccadilly, the very church in which his first marriage was celebrated. After a short and somewhat superfluous honeymoon, Dr Cross brought his blushing bride home to Shandy Hall, and installed her as the new mistress. Their homecoming proved to be the last straw.
“Suspicions being aroused, the body of the late Mrs Cross was exhumed on July 23, and a post-mortem examination having been held, arsenic was found, and the prisoner was arrested,” the BMJ court reporter stated.
William Roughead said the trial of Dr Cross for the alleged murder of his wife by poison began before Mr Justice Murphy, presiding judge at the Munster winter assizes, on Wednesday, December 14, 1887. “Immense interest was taken in the proceedings; admission to the court was by ticket, and for such there were several thousand applications,” he said. “Throughout the four days’ hearing every available inch of space was occupied, a great number of ‘ladies’, so called, having secured seats.”
The BMJ account of the court proceedings identified Dr Charles Yelverton Pearson, professor of materia medica in Queen’s College, Cork, as the man who made the post-mortem examination. In his evidence, Dr Pearson confirmed that there was no sign of putrefaction in the intestines and that the heart and lungs were healthy. There was no sign of typhoid fever.
However, he found white particles in the gullet, which were arsenic. In the liver he found 1.28 grams of arsenic. He also found arsenic in the spleen and kidneys. The quantity of arsenic present was quite sufficient to cause death, he noted. He also found traces of strychnine. It appeared that the unfortunate lady had been slowly and regularly poisoned with arsenic, and the finishing stroke given with strychnine – which doubtless caused the characteristic screams heard at midnight by the maid. In these circumstances, Dr Cross, protesting his innocence, was found guilty and sentenced to death.
The final resting place of Mary Laura Cross, aged 46
Once the verdict of guilty had been returned, the prisoner addressed the court, which he did for half an hour. “He protested his absolute innocence. The arsenic he purchased had all been used for the dipping of his sheep. None had been found in the house,” said the BMJ report. “He was 63 years of age. Did they think that, having regard to his age and to his poor children, he was likely to do such a thing! He never did it. Why should he? He had stood to lose £40 a year by her death, and other money that was likely to come from her brother.”
He produced two prescriptions from a doctor to show that arsenic and strychnine had been prescribed for his wife, and he said his wife had talked to Miss Skinner about the effects of arsenic on the complexion. Finally, he claimed that he had married Miss Skinner because he had “done her a wrong” and because he wanted her to look after his children. Judge Murphy sentenced him to be hanged on January 10, 1888.
By the time it came for his execution Dr Cross’ hair had turned white. The hangman was James Berry. The execution was not one of Berry’s most successful ones because of a problem regarding the proud criminal involved.
For most of his life Dr Cross had been a well-born gentleman, and his friends in the area of Cork were from the aristocracy and upper classes. In fact the governor of the prison did not attend the execution because of his feelings about Cross (he sent a deputy instead).
Berry found that these friends were at the execution to give the condemned man some emotional support. Dr Cross, grateful for their attendance, wanted to stand at attention with respect to them, facing as he died. Berry, however, traditionally faced his subjects at executions towards the wall. But each time Berry turned Dr Cross to the wall, the doctor would turn around again.
For all the notice that the man he was going to kill took of him, Berry might not have been there.
Finally, an official ordered Berry to stop this silliness and allow the doctor to die facing his friends, reminding him that Dr Cross was a respected soldier. Berry did as he was told, and Dr Cross died without a word.

The reluctant hangman

James Berry
James Berry was Britain’s hangman during the latter half of Queen Victoria’s reign. A man of strange contradictions – capable of cold, callous detachment but so affected by his job that he was often unable to speak before an execution – Berry was the last hangman able to write freely about his work.
Berry was an ex-policeman who took a genuine interest in his ‘victims’ – even creating his own ‘black museum’. Aiming to be both efficient and merciful he worked to a table of drops of his own creation. Unfortunately, this did not prevent a few horrific incidents. The most notable was the execution of Robert Goodale who was decapitated by the force of the drop. In contrast, in the famous case of John Lee – “the man they couldn’t hang” – Berry was unable to open the gallows trap. After three attempts – during which the gallows trap worked perfectly when Lee was removed – Lee was reprieved.
During his eight years as hangman, Berry executed over 130 men and women – and even claimed to have hanged Jack the Ripper. He enjoyed publicity and toured the country talking of his experiences and showing lantern slides of grim prison scenes and executions. Yet in later life this contradictory character suffered from depression and became almost suicidal.
He was haunted by nightmares of the people he’d killed and eventually became a preacher and ardent campaigner against capital punishment

Friday, August 24, 2012

One asthma death too many

Tisha Smith 1993 - 2008
One person dies every week in Ireland from asthma. It's a shocking statistic and despite improvements over the years in asthma management and patient awareness, this tragic statistic remains unchanged.

There is no loss more devastating than the death of a child, a painful reality that Waterford couple, Geraldine and Martin Smith, and their family are struggling to live with every day.
Their 14-year-old daughter, Trisha, died en route to hospital in 2008 from an asthma attack. Trisha's brother and sister, Stephen and Claire are heartbroken by the loss of the sister they loved so much.
"Our Trisha was the most beautiful girl. She was very academic, was well liked at school by students and teachers, and she was my treasure and strength, particularly after her brother Martin died in a drowning accident, 12 years ago now," Geraldine recalls.
"My husband is asthmatic and Martin was asthmatic. Trisha was diagnosed with asthma as a child. She was allergic to the pups we had - that's how it started.
"Her asthma was quite mild, but she still carried her inhaler around with her. It never stopped her being active and having fun, in fact she had walked a marathon for a cancer charity only three weeks before she died.
I'm her mother and I would never have thought that asthma would rob my baby of her life," says Geraldine, her voice brittle with a sorrow that is never far from the surface.
"It was only when Trisha turned 14 in December 2007 that her asthma started acting up. She had an attack in January and I brought her to the hospital and once she got the nebuliser she was grand. Then in June, she had a cough for a couple of weeks so I brought her to the GP. I didn't know that the coughing was asthma-related.
"I thought it was an infection. I was so worried about her. The GP listened to her chest, gave her antibiotics, and advised me not to be so anxious. I know I was an overprotective mother, but I was all too aware of how fragile life is - I had already lost a child. I wrapped Trisha up in cotton wool and I still lost her. She used to say to me ‘mammy, why do you love me so much?' I told her every day of her life that I loved her, because of Martin.
"I wouldn't have associated death with asthma but look what I lost. Trisha was my strength when Martin died. She was a beautiful child, a beautiful child to rear and everything. It's not real what we're going through as a family. I do blame myself, I didn't take asthma seriously enough."
Geraldine struggles deeply with the knowledge that she was not at home when Trisha died. Each year on the anniversary of her son Martin's death, she and her husband went away together as a means of coping with their pain. That weekend, Trisha was staying nearby with family friends.
"She and her friends were in the house chatting and laughing, doing the ordinary things that teenagers do. Trisha got a fit of laughing and she couldn't catch her breath and she panicked," Geraldine recalls.
"Her friends called a taxi to bring her to the hospital, and she got the attack in the taxi. The taxi driver being very well meaning, put her in the recovery position, which you're not supposed to do with people with asthma, they're supposed to sit up but few people would know that. He was doing his best to help.
"I wrapped Trisha up in cotton wool and I still lost her"
"They called the Gardai and the Garda on duty performed CPR but I'd say at that stage Trisha was dead. She was 14 and a half," says Geraldine."I wouldn't have thought that my Trisha would die of an asthma attack in a million years. I'm paying a very high price for something I didn't know. I'm living without Trisha and that's just a nightmare. You have to believe that they're in a better place. But I hurt a lot."
Over the past decade, Ireland along with many other western countries has seen a significant increase in the prevalence of  asthma. More than 470,000 Irish people suffer from this increasingly common and often debilitating condition and prevalence in Ireland is now the fourth highest in the world.
While death from asthma remains an uncommon event, reducing these preventable fatalities and improving the quality of life for asthma patients is the driving force behind the work of the Asthma Society.
"Asthma deaths in this day and age are unacceptable. The vast majority are preventable, but without the correct information, treatment and support these tragic deaths will continue and more families will be left devastated by the loss of a loved one," says Dr Jean Holohan, CEO of the Asthma Society. 
Asthma mortality figures in Ireland have remained static over the past five years, in the range of 55 to 60 deaths per year.
When this number dropped dramatically to 34 deaths in 2010 - a 40% decrease on the previous year and the lowest recorded figure to date - the Asthma Society was cautiously optimistic that perhaps this tragic trend was reversing.
"Unfortunately, we have just received mortality figures for the first half of 2011 and they are already back up to 38 deaths. We have no idea why the number was so low in 2010, but what is clear is that we are not having an impact on the number of asthma deaths in this country and this has to change. That is why we have decided to make asthma deaths the focus of World Asthma Day this year," Jean explains.
Most asthma deaths occur in older patients, many of whom may have other complicating health issues such as a chronic respiratory or heart conditions. However, the Asthma Society was shocked to hear that two Irish children recently suffered fatal asthma attacks.
"These are the first young deaths that we've been aware of in the last couple of years, and it's absolutely heart-breaking," says Jean.
"In previous years we've focused on very positive messages for World Asthma Day - we've been encouraging people to use our information, to use our services to enable them to optimise their own asthma control. But this year we felt that we had to highlight the terrible tragedy of asthma deaths, and that with the correct management, most of these deaths can be avoided."
Most people are surprised to learn that a child is as likely to die from poorly controlled mild to moderate asthma as they are from severe asthma.
While a breakdown of risk factors for paediatric asthma deaths is not available in Ireland, the UK National Review of Asthma Deaths (NRAD) has confirmed that about 50% of deaths occur in children with mild/moderate disease.
The confidential review enquiry also found that of the 20 children who died between 2001-2006, approximately two-thirds did not have a written asthma management plan and only one-in-four had a peak flow measurement recorded. Seven children had spirometry recorded, only one of whom had mild/moderate asthma.
Importantly, almost half of the children who died were poorly compliant with prescribed medication and one-in-three had poorly controlled asthma despite taking their recommended treatment (which was therefore considered to be inadequate). That's according to the first report on asthma deaths in children in the eastern region of the UK, which was published in March this year in the Primary Care Respiratory Journal.
"The key to keeping your asthma under control is to have a written asthma action plan from your doctor or asthma nurse, take your controller medication regularly, every day - even when you're feeling well," advises Jean.
"That's because it works over a period of time to give your airways the protection they need. Keep your controller in a handy place - so that taking it becomes part of your daily routine. It is estimated that 20,000 emergency department attendances per year are as a result of asthma, and many of these could be prevented with simple measures."
Jean reassures people with asthma and parents of children with asthma that their condition can be controlled with appropriate treatment. When controlled, there should be less flare-ups and severe exacerbations should be rare.
"The UK confidential enquiry found that about 50% of children died between June and August, indicating that their flare-ups may have been allergy-aggravated. This suggests that clinicians should really be very thorough about helping people to identify what their asthma triggers are so that they can take extra precautions at those times of the year when they might be vulnerable."
"I think we cannot stress the message enough that people need to be aware of and manage their own asthma, which for most patients is mild to moderate.
"Everybody needs to make sure that they have the best advice, that they are compliant with their medication, and that they are aware of their triggers and take the necessary precautions, even when they're well.
"Don't take risks with your asthma by reducing your controller medication without clear guidance from your GP or respiratory specialist. Get an asthma plan, if you don't have one already, and discuss it with your doctor - it is key to monitoring your condition and being able to identify when you need to seek help, and when you should do so urgently. Never hesitate, and if in doubt seek urgent help."
"It is also vital that the people around you, responsible for you - in schools, in sports clubs - that
they are aware of the simple but very important steps to take in the event of an asthma attack," she suggests.
"Always make sure you have your reliever medication with you - don't leave the house without it; in the school bag, in your handbag, in the sports bag. For younger children it's really important to carry a spacer device. And be aware of the five step rule - it says exactly what people should do, either for yourself or if you're looking after someone.
"Never be afraid of making a fuss, particularly at night. If you or someone else having an attack is not responding, don't worry about upsetting other people. Call for help, and don't take any risks."

The Five Step Rule for Asthma Attacks
1. Take two puffs of reliever inhaler (usually blue) immediately
2. Sit upright and stay calm
3. Take slow steady breaths
4. If there is no improvement take one puff of reliever inhaler
every minute
• You can take up to 10 puffs in 10 minutes
• Children under six years can take up to six puffs in 10
5. Call 999 or 112 if:
• Symptoms do not improve after following steps 1-4 OR you
are worried (If an ambulance does not arrive within 10 minutes repeat Step 4)
During an asthma attack, extra puffs of a reliever are safe!
• Don't put your arm around me or lie me down - this will
restrict my breathing
• Do use a spacer if available
• Do listen to me - I have had attacks before 
From the Asthma Society of Ireland Asthma Attack Card'