Do you remember the drug thalidomide? It was first launched in 1957 by a German company, Grunenthal. It was sold in 46 countries and marketed to pregnant women around the world as an anti-morning sickness pill. The drug was banned in the early 1960’s after it was found to cause deformed limbs in the children of women who took it in early pregnancy. Around 10,000 babies around the world were born with defects caused by the drug, ranging from malformed limbs to no arms or legs. An estimated 3,500 survive worldwide, and 31 of these are in Ireland.
Thalidomide sufferers are a tenacious bunch of people. They have lived all their lives with pain and disability and now as they enter their 40’s and 50’s, they are noticing a sharp deterioration in their physical condition and want the government to improve their ‘meagre’ compensation. In 1975 a settlement was made with the Irish government which comprised of a lump sum and a monthly pension for life to supplement the compensation awarded by the German government, which eventually accepted liability. While Irish authorities never accepted liability for the tragedy, the Department of Health was the regulatory authority for drugs when it was on the pharmacy shelves. The lump sums at the time, when those affected were around 12 years old, amounted to a few thousand euro. Depending on the level of disability, the pension now ranges from €16-€35 per day. A lot of sufferers are now in crisis and are having to leave work or are struggling on in jobs they can’t afford to leave. They are facing difficult life choices and need financial security as they struggle against rapid decline.
Governments all over Europe are sitting down with those affected by thalidomide to sort out a proper financial package and Irish survivors are hoping that the Department of Health will look sympathetically on their case. The Irish Thalidomide Association hasn’t gone back to the government for support in 33 years. Surely it’s not too much to ask that they should now be afforded the dignity and justice they so rightly deserve?
With thanks to Roisin Ingle of the Irish Times, for her informative article on this topic.
I accompanied my elderly mother to a high-tech private hospital yesterday for a check-up with a specialist. While she received nothing but the best of care, I couldn’t help but feel very uncomfortable with the whole experience. The gap between the public service and the private sector seems to be ever widening and I really fear for the future of our health service if privatisation continues to be seen as the way forward.
My mother is a long-term resident in the dementia unit of a large public nursing home. She is severely physically disabled and suffers from an unusual form of dementia. When she was admitted to the nursing home some years ago, I was told that she would no longer require health insurance as all care is fully covered by the public health system. Knowing what I do about the state of our health service, I ignored this advice and opted to maintain my mother’s basic insurance cover. Every citizen in this state is entitled to a bed in a public hospital but the reality is, only the very sickest patients and accident victims succeed in getting a bed when they need it. Otherwise, the waiting lists for specialist appointments, out-patient services and elective admissions, are atrocious. I wanted to keep her insurance as a safety valve in case we ever needed to access specialist intervention for her.
As things turned out, my mother developed a nasty auto-immune condition recently and required urgent specialist attention. The nearest appointment we could get for her at the local public hospital involved a four-month wait. A private appointment was available at the Beacon Hospital for the following day so naturally I gave the go-ahead to proceed with this appointment. Her insurance policy covers out-patient expenses incurred for investigations carried out in a private hospital but it offers little or no help with appointment charges. Frankly, I didn’t care how much it all cost as long as my mother got the urgent help she needed. As it transpired, she required day surgery and her insurance thankfully covered this expense so the charges for her appointments pale into insignificance by comparison. She will have to be carefully monitored until her condition settles.
The Beacon Hospital is quite literally a beacon of the private healthcare market. It’s quiet and efficient but it’s also ‘over the top’ in luxury and exudes wealth out of every corner. The leather armchairs were so huge in the waiting area where we checked-in yesterday that it was almost impossible to manoeuvre a wheelchair. The sight of my poor mother slumped in her wheelchair could not have been more incongruous with the exclusive surroundings we found ourselves in. Her world in the nursing home is very far removed from this plush hospital environment and I felt sick just thinking about how inequitable the whole health system has become. Why are we forced to access care in ‘over the top’ facilities like this when all that’s needed is a basic health service that works efficiently? Why does there have to be such a contrast between public and private care? I hasten to add that my mother was treated with the utmost respect at the Beacon and I’m very grateful for the treatment she’s received there. However, she’s also treated with the utmost respect at the nursing home but her surroundings there leave a lot to be desired. Why does it have to be so different? Why can’t we have a public health service that treats all citizens and especially it’s oldest ones, with the dignity they deserve?
The Beacon Medical Group has won the tenders to build three of the co-located hospitals that are due to be built on public hospital sites (Beaumont Hospital, Cork University Hospital and Limerick Regional Hospital). If what I saw at the Beacon Hospital yesterday is what our Minister for Health envisages as the way forward for our health service, then I despair. When are people going to wake-up to what’s happening to healthcare in this country, and shout STOP?
Yes, it’s that time of year again. For the next two weeks, I shall be glued to the television screen at every available opportunity, watching the Ladies Singles draw unfold. This year, my money’s on the Serbian player, Ana Ivanovic to win the title. She’s the top seed and the world No. 1 player having just won her first Grand Slam at the French Open, so she’s got it all going for her.
I’ve been hooked on Ladies tennis for as long as I can remember. I used to love playing the game myself but my funny joints (EDS) put a stop to play so these days, I merely enjoy it as a spectator sport. Last year, I made my first ever trip to Wimbledon to see the real thing. I booked the flights in advance of my operation in March so that I’d have the trip to look forward to after the surgery. It was a fantastic experience but now that I’ve done it, I’m happy to watch the Championships from the comfort of my own home. In all of the many years I’ve had surgery, I’ve never managed to time it right so that I can really put my feet up to enjoy the tennis. My family always groan when Wimbledon fortnight arrives as meals have to wait their turn. Even blogging is likely to suffer so don’t say you weren’t warned!
I’ve just dropped my daughter off to the airport for an early morning flight to the sun. She’s knows better than to stick around when Wimbledon is on. It’s every man for himself for the next two weeks. Perhaps my marriage vows should have read “For better or for worse, in sickness and in health, and for Wimbledon.”
When it comes to medical emergencies, it could be said that I’m a bit of an old-timer. You see, I have a long history of emergency admissions to hospital and friends and family tend to joke me about it. I never quite know what lies around the next corner but as the saying goes, “if you’ve gotta do it, at least do it in style.” I do my best.
No one pays much attention to their sinuses until they start to hurt. I’ve suffered from sinusitis all my life so headaches are commonplace but pregnancy really exacerbated the problem. The hormones of pregnancy can have a direct effect on the lining of the sinuses and in my case, it left behind a real legacy. Having successfully delivered my second child after a pregnancy fraught with difficulties, I continued to have severe sinus headaches. A CT scan revealed that an abscess had developed in the frontal sinus, very close to the base of my brain. Endoscopic surgery was carried out to drain the abscess and the relief was instantaneous. However some months later, the pain began to slowly return again until one day I awoke in so much pain, I knew I was in real trouble. On calling our family GP to the house, he immediately decided that emergency treatment was required and contacted the surgeon who had previously operated on my head. The surgeon was in the operating theatre at the time but the hospital he was in, did not have the surgical instruments he required for my head. He recommended that I should be transferred to another larger hospital by ambulance to await his arrival. I was duly rushed to hospital and taken straight to theatre to be prepared for emergency surgery on my skull. Despite being in severe pain, I have a vivid memory of lying on the operating table while one of the theatre nurses took a call detailing the ETA of the surgeon and his anaesthetist as they both rushed across the city to come to my rescue. The drama of the occasion resembled a scene from Casualty except that there was nothing fictional about this episode. It was all too real.
I awoke several hours later feeling decidedly frail having had several holes drilled in my skull to relieve the pressure. The surgeon appeared looking totally exhausted and announced that he’d needed my emergency operation about as much as “a hole in the head.” I knew exactly how that felt. It hurt to laugh but it was hard not too.
This evening a debate is due to take place in Seanad Éireann to discuss the future of the HSE. Last week, the Labour Party announced a set of proposals to reform the HSE. It has now put forward a motion to the Seanad seeking it’s support in facilitating reform of how healthcare is delivered in Ireland.
Senator Alex White leader of the Labour group in the Seanad writes “The motion is not a personal attack on the Minister, the Government or anyone else, nor is it a retreading of old arguments; it is comprised of a positive set of proposals regarding how the HSE can be reformed.”
The wording of the motion and the Labour Party’s six step recovery plan can be found here.
You can learn more about the Labour’s plans for reforming the HSE by clicking here.
Having listened to RTE’s recent Prime Time investigation into the HSE where our health service was described as a poorly integrated, fragmented, poorly structured, inadequately resourced, appallingly planned service, I think the HSE would do well to take heed of some positive suggestions.
I welcome any debate which facilitates the best way forward for our health service. Otherwise the road ahead looks depressingly bleak.
On reading Grannymar’s post One Armed Bandit last week, I was reminded of a time in my own life when I fought a one-armed battle. I have an inherited connective tissue disorder known as Ehlers-Danlos syndrome (EDS) which leaves me with a tendency to stumble and fall a lot. Being right-handed, my right shoulder has taken many blows over the years but it’s still going strong.
When I was in college many moons ago, I slipped and fell dislocating my right shoulder in the process. Luckily it went back into it’s socket spontaneously but the damage had been done. The anterior ligaments of the joint were torn and my arm needed immobilisation in a sling for many weeks to facilitate repair. From that day onwards, my right shoulder was unstable and certain movements were extremely painful. The joint would easily sub-locate and on numerous occasions this happened when swimming, leaving me stranded in pain with one arm stuck up in the air!
When my first child was a toddler, I stumbled one day while carrying him and again badly tore the shoulder ligaments. As my arms were full, I could not reach out to save my fall and landed on my right elbow sending the full force of the blow through my shoulder joint. I was seen by an orthopaedic surgeon who recommended an operation to stabilise the joint. I underwent open surgery (it’s done by micro-surgery these days) to have the ligaments of the shoulder joint re-structured to form a support network and they were also shortened to limit movement in the joint. A large metal screw was used to hold the re-attached ligaments in their new position. When I awoke from the anaesthetic, my whole right arm was tightly strapped across my chest and it was a struggle even to breathe. I was to spend the next six weeks in this tight strapping with only one arm usable. It was a difficult time as I had a small toddler to look after but we soon devised ways and means to get around most problems. I became a dab left-hander at doing most tasks though it took a while to get used to getting dressed one-handed and trips to the toilet took rather longer than usual. You try pulling up and down your clothes with one hand and you’ll realise what I’m talking about!
Once the ligaments had healed, all the strapping was removed and I started on a long programme of physiotherapy to recover movement in the joint. This was a very painful process and as time went on, the pain got worse instead of better so I was sent back to the surgeon for review. He was puzzled by the pain and recommended further rest for the arm, in a sling. A few weeks later I noticed a protruding lump at the top of my right arm which was very painful to touch. The metal screw used to fixate the ligaments had wriggled it’s way loose and x-rays showed that at least one inch of it was protruding from the bone. Back I went into hospital for more surgery to remove the piece of offending metal which I still have to this day, as a souvenir. Yet more weeks ensued with my arm in a sling before I was allowed to start physiotherapy again. You have no idea what pleasure it was to finally eat a meal using a knife to cut my food.
One of the aims of the surgery was to restrict movement of my arm in certain directions, to reduce the likelihood of further dislocation. No matter how hard I try, I cannot rotate my arm outwards and have learnt instead to rotate my body to reach objects on my right-hand side. I used to love playing tennis but my restricted shoulder movements made this impossible. Not to be defeated, I went back to tennis lessons starting at beginner level and learnt to play the game left-handed. Anything is possible when you’re determined to succeed. This all came to abrupt end however with another stumble which resulted in torn ankle ligaments but that’s another story. These days my right shoulder joint makes lots of strange creaking noises but it remains pain-free. I only wish the rest of my joints were as good.
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.
Ever heard of sleep apnoea? The most common form of this is known as obstructive sleep apnoea (OSA). It is a chronic condition which causes poor quality sleep and results in excessive tiredness during waking hours. OSA can affect people of any age and of either sex, but it is most common in middle-aged, somewhat overweight men, especially those who use alcohol. During inhalation, the airway will collapse causing pauses in breathing for about 30 seconds, then the person usually startles awake with a loud snort and begins to breathe again, gradually falling back to sleep. OSA has the potential to have serious negative effects on a person’s quality of life and many people go undiagnosed. In order to confirm the diagnosis, it usually requires an overnight stay in a specialized sleep laboratory where sleep is monitored and measurements are taken while the person sleeps.
In Dublin, there is only one sleep apnoea clinic available to patients in the public hospital system and this is based in St. Vincent’s Hospital. There is a delay of at least two years for an appointment to see a specialist in this clinic and if sleep apnoea is suspected, the patient is referred on to the specialized sleep laboratory at the hospital to be monitored overnight. Again there is a long waiting list for an overnight bed in this unit. At present the sleep apnoea unit in St. Vincent’s Hospital is undergoing renovation and the old casualty unit at the hospital is being used as a temporary sleep laboratory.
A recent radio programme exposed major flaws in this temporary accommodation. The conditions sound horrendous. Firstly, the one toilet in the unit, is filthy and unfit for purpose. The unit is used as a pain management clinic during the day and by evening time, it’s unsuitable as a sleep environment. The windows cannot be opened due to noise outside in the corridor and patients complain that they cannot get to sleep due to the heat and lack of air. It is a shared unit for men and women, with little or no privacy. It makes no sense whatsoever to call it a sleep laboratory if the conditions are so bad that patients cannot sleep. And remember, these are patients who have been waiting for years to be monitored. Frankly, this is sleep deprivation of a different kind and it could even be called obstructive.
Just another example of bureaucracy gone mad, while patients continue to suffer.
You can listen to a podcast of the programme by using the link below.