Room 101

Room 101 is a BBC comedy television series in which celebrities are invited to discuss their hates with the host in order to have them consigned to the eponymous chamber from the novel Nineteen Eighty-Four. My own experience of Room ‘101’ was far from humorous though it did succeed in banishing forever, the mystery of my medical condition. The year was 1993. The location was a hospital. The journey was tough but the race was won!

Years ago while recuperating at home following surgery, I developed unforeseen complications and was rushed back into hospital as an emergency. I was to remain there for a further week while undergoing treatment to stabilise my condition. Within 36 hours of arriving home for the second time, I became seriously unwell again and was rushed back to hospital by ambulance. That night I did something I’ve never done before, or since – I shared my bedroom with a strange man. You see I’d been admitted to a cardiac unit for observation and found myself installed next to a man with a seriously hairy chest. We were the only occupants of the room and all I could do was laugh at the situation I found myself in. I hasten to add that we were both hooked up to monitors and all activity was closely observed!

The following morning, I was declared fit enough to be moved out of the cardiac unit into a single room, number 101, to undergo further investigation under the care of a physician. I was very unwell at the time and this second relapse was a mystery to everyone. The new physician examined me thoroughly and then disappeared, leaving behind a lot of unanswered questions. Over the next few days, I reached the lowest physical and psychological ebb I’ve ever experienced. A whole month had elapsed since the surgery and I appeared to be losing the battle. My children were both very young at the time and my husband was under huge pressure trying to manage everything on his own. I remembering phoning home one Saturday evening to check that our 3-year old had settled for the night only to find no-one at home. This totally cracked me up. I was so low at that point, I couldn’t fathom out what was happening and that’s when the realisation hit that life was going on without me, regardless. I cried myself to sleep that night.

The next morning things started to improve. My husband phoned to say they’d had a lovely meal out at our friends’ house the previous evening. He sounded on such good form, I hadn’t the heart to tell him how low I’d felt as a consequence of being left out of the loop. Shortly after his call, I turned on the television to find the London marathon in progress and having nothing better to do, I watched the whole thing from beginning to end. I spotted a female competitor with the number ‘101’ on her chest and from that moment on, she and I became an inseparable team. As the race entered the final straight, my running friend was placed third and was steadily gaining on the two women ahead of her. I watched with enormous excitement as she overtook them both and crossed the finishing line as the winner. I was ecstatic and cheered my little heart out. I knew this was a sign that I too, was going to be a winner in the long run. Later that same day, the physician reappeared at my bedside having researched my condition in the interim. He had established that I had an underlying genetic condition known as Ehlers-Danlos syndrome (EDS) and this diagnosis unravelled the puzzle of my illness. The battle was won.

An Update: Thanks to my son, Robin, I can now tell you that the winner of the 1993 London Marathon was Katrin Dörre-Heinig… number 101. Talk about a flash-back!

Another Year Waiting

With Ireland’s entry for the Eurovision song contest featuring in the news today, I found myself humming along to the tune of “What’s Another Year?”, Johnny Logan’s winning entry in 1980. Those were the days when we were told to tighten our belts while those in power were quite literally feeding off our taxes. Our health service was starved of funds at a time when it’s infrastructure required huge investment to meet with the demands of a rapidly expanding population. Hospitals wards were closed down causing delays throughout the system. Our present crumbling health service is testament to the government neglect of that era. Today’s waiting lists have escalated to the point where people are dying while they await treatment. The lyrics of the song below are very poignant when you consider the number of people suffering as they wait to see a specialist, in order to access crucial treatment.

I’ve been waiting such a long time,
looking out for you
But you’re not here
What’s another year?

I’ve been praying such a long time
It’s the only way to hide the fear
What’s another year?

I’ve been crying such a long time
With such a lot of pain in every tear

What’s another year? What’s another Y-E-A-R?

Susie Long sadly wasn’t able to wait another year. Her premature death from bowel cancer last October, was directly attributable to a long delay on a waiting list. By the time her diagnosis was made, it was already too late. Susie bravely used her own plight to highlight the inadequacies in the public health system. She succeeded in mobilising the country into thinking about where we are going as a society. I still feel outraged for the way our health service failed her. Yesterday should have been Susie’s 42nd birthday.

We’ve waited for long enough. It’s time for our Minister for Health to get off the stage. She gets “Nil Pointe” from me. And by the way, Dustin gets my vote for Taoiseach!

The Health Debate

Well, actually it was more of a discussion than a debate and even though I didn’t succeed in getting to have my say, I’m glad I tuned in to Your Call on Newstalk106 yesterday. As was predicted, both our Minister for Health and the CEO of the HSE, declined the invitation to take part in a live debate on the health service. Not one to be easily dissuaded, Brenda Power went right ahead and chaired a lively discussion with a panel of experts which included a well-known retired cardiac surgeon, a GP, a health economist and Newstalk’s own economics editor plus contributions from various phone-in callers. While the opinions of the panel differed at times, everyone was in agreement that morale within the health service is at an all-time low.

The following is a brief synopsis of the opinions expressed during the programme: “We do not have a health service – we have a dysfunctional, immoral state system. Services are not joined-up and are hampered by a dysfunctional transport system. The health service is a black hole with €15 billion spent on it last year and further massive cutbacks in health spending are inevitable. The GP’s have not been consulted on hospital development plans and funding has been pulled from GP training schemes and out-patient services. Management problems within hospitals are directly affecting vital services such as cleaning. The prevalence of MRSA and other superbugs, has caused a widespread fear amongst patients of going into hospital. Over 52% of the population take out health insurance because of the rationing in the system. The National Treatment Purchase Fund (NTPF) is ‘like a finger in the dyke’ and is not cost-effective. The NTPF pays more than private health insurance schemes to secure treatment for public patients in private hospitals and in the process, is denying access to patients who pay for top health plans. Emergency departments (A&E) are unfit for purpose. Bed capacity is a big issue and few are in agreement with the HSE’s opinion that more beds are not needed. Rehabilitation facilities are almost non-existent throughout the country. Psychiatry has been badly neglected as a service. The plans for co-located hospitals are a joke. It is immoral to have one standard of care for public patients and another (better one) for private patients. Focus should be put on the public service but there is no incentive in place at the moment. Numerous reports have been produced on the health service but they have not been acted upon. The hallmark of quality service is ‘morale’ and the present ethos within the health service is one of low trust, low morale and no sense of direction.”

So, while nothing particularly new or startling came out of this discussion, it did provide a good overview of the problems that exist. The bureaucrats within the Dept of Health and the HSE should hang their heads in shame at this long litany of dysfunction. Patients have suffered for too long without the basic healthcare they deserve. The general consensus of opinion from the panel was that trust has broken down and a change of mindset is needed if a way forward is to be found. Many feel that our Minister for Health should resign as the level of confrontation has become too great for co-operation. Progress will only become possible if the powers-that-be learn to engage with the people on the ground, and listen to their views. We can only hope this process started yesterday.

Have Your Say

I am a patient; I am an MRSA story; I am one voice; I am not alone.

If you have a story about the health service in Ireland and would like to air your views, here is your opportunity.

Newstalk 106 would like to hear from you about your experience, be it good, bad, happy, sad or inspiring.

You can email your story to healthfamine@newstalk.ie or text HEALTH to 53106 (texts cost 30c).

All day on Wednesday 20th February 2008, Newstalk radio will be taking your calls, comments and stories about the health system. Stories will be aired throughout the day.

On Thursday 21st February, your comments will be fed into a live debate on Your Call with Brenda Power from 9am.

This is your chance to have your say about the health service. Don’t miss it!

Public or Private?

Do you have private health insurance? I do, as does over 50% of the Irish population. I have no problem in admitting that it offers a welcome safety valve in an otherwise chaotic system of healthcare. I can think of lots of other useful things to do with the money I spend on health insurance but I choose to make healthcare my priority. It’s not a decision I take lightly. I firmly believe that the way forward for our health service is a system of universal health insurance, funding a single tier health delivery model which promotes equity of health care. However as our health service is in such complete disarray, I feel I’ve no other option other than to continue to invest in health insurance. I’ve certainly had reason to be thankful for it over the years though it has proved at times, to be a bit of a double edged sword.

In late 2004, I was told that I needed some complex surgery carried out to arrest a chronic frontal sinus infection. I was under the care of a consultant surgeon who operated a private practice as well as a public service contract. With my health insurance policy, I’m fully covered for surgery in a private hospital with accommodation in a single room. However, my choice of doctors and hospitals is limited as I have a complicated medical history. On this occasion I was informed that the surgery would have to be carried out in a large public hospital where the necessary back-up facilities would be available. I was duly given a date for surgery and booked for post-op recovery in a high dependency ward. Two days before the operation, the hospital phoned to ask me to report immediately for admission. I initially protested at the stupidity of taking up a bed for two days pre-op but was told that a bed could not otherwise be guaranteed. I had no option but to agree to this crazy plan. By the time I had my overnight bag packed, the hospital phoned again to say that the bed was no longer available due to an admission from casualty. This process was repeated several times over the following two days until eventually, my surgery was cancelled due to the failure to secure a bed. The surgeon was furious as an operating theatre and a surgical team had been booked solely for my lengthy operation and it all went to waste that day. Frustrated by the restrictions imposed, the surgeon suggested that a stop-gap procedure be carried out in a small private hospital. I was duly admitted the following week and underwent some relatively minor surgery. However, this action also backfired as the surgery was unsuccessful and within months I had to return to discuss the bigger operation. The surgeon again insisted that the surgery should be carried out in the large teaching hospital and in order to secure a bed, he put special arrangements in place to allow me to be transferred to the nearby private co-located hospital, to recuperate. This was only possible because I had health insurance. It should not have been necessary.

I duly checked into the co-located hospital early on the morning of my operation and within hours, was whisked away to the operating theatre in the main hospital where I remained for the rest of the day. When I next came to, I was back in the private hospital in a shared room with three other women. I now had a sophisticated stent in my skull to facilitate drainage and a surgical wound over my right eye. I received good post-operative care and was discharged home feeling extremely lucky that all had gone so smoothly. About two weeks later, my post-operative pain began to worsen and I developed severe swelling around both eyes. I was asked to report to the busy A&E department in the main hospital where I was assessed and admitted. My health insurance again secured a bed for me in the private hospital and I happily settled into a 5-bedded room, secure in the knowledge that I was lucky to have a bed at all. Three days later, it was discovered that my surgical wound was infected with MRSA and thus began a lonely journey which continues to this day. The following week while I was longingly gazing out of the window of my isolation room, I spotted a woman I recognised in the car park. I’d shared a room with her in the private hospital a month previously, immediately following my operation. I waved frantically to attract her attention and she came over to chat to me through the open window. That’s when I learnt that her problem had turned out to be an MRSA infection and that’s when the penny dropped!

The airwaves are constantly buzzing these days with sad stories about the failures within the public health service but private hospitals are not the answer to the problem. They are selective and only serve to perpetuate the upstairs downstairs model of healthcare in this country. They do no offer A&E services which means that all patients requiring emergency treatment must be processed through the chaotic system in the public hospitals, regardless of their insurance status. Those with complex medical/surgical conditions generally cannot be treated in private hospitals because the medical back-up there is too limited. And anyone who takes out health insurance in the belief that they’ll be entitled to a single room, is in for a big shock if they are hospitalised. There is a huge shortage of isolation facilities across the country and single rooms quite rightly, have been prioritised for infectious patients and those who are dying. Our public health service is expected to provide all these service yet it’s on it’s knees through years of neglect and inadequate funding from the Government. Unfortunately, our Minister for Health continues to believe that the way forward is to promote the present unsatisfactory public/private mixture of healthcare by encouraging the development of co-located private hospitals. You have to question the wisdom of backing a policy that further perpetuates inequity of healthcare. We have a booming economy in Ireland but our health service is failing the most vulnerable people in our society. This is not about public versus private healthcare, it’s about saving lives.

MRSA and Infection Control

A recent report has shown that Ireland has the third highest rate of incidence of MRSA in the EU. The over-prescribing of antibiotics, poor hospital layout and poor hospital and personal hygiene are the main factors responsible for the high rate of MRSA infection. Following my own experience with MRSA, I concluded that our health service has serious infection control issues to resolve.

Some years ago, I was re-admitted to hospital due to complications (orbital cellulitis) following a complex frontal sinus operation. I was assessed in A&E before being transferred to a 5-bedded general ward. I received intensive IV antibiotics but my symptoms failed to respond to treatment and three days later a nasal swab which had been taken on admission, revealed that I was suffering from an MRSA infection. I was immediately moved to an en-suite single room and barrier nursed in isolation while undergoing specialised intensive treatment. So the delay in getting this result had meant that for three days I had been an infection risk to the other patients in the room. This regrettable situation came about simply because our hospitals do not have adequate funding or the laboratory resources to fast-track MRSA screening, and as a result infection control suffers.

Over the following months my infection gradually worsened and I was to be re-admitted to hospital on three further occasions for treatment, each time being processed through the A&E department before being transferred to a hospital bed. This policy would question infection control strategies. By this stage I was an officially ‘labelled’ MRSA patient and on arrival in A&E, I would be quickly escorted to a tiny walled-off area of the unit. This ‘box’ was the HSE’s answer to infection control and it really was worse than a bad joke. It had no en-suite facility so during the many long hours I spent in this hell hole, I used the same toilet facilities as all the other patients thereby defeating the purpose of isolation. No sign of an infection control protocol here. I used to dread the looks I got whenever I emerged from those four walls.

On another occasion after spending the night in A&E, I was transferred to a single room on a busy medical ward. Again this room had no en-suite facilities and I was expected to use shared toilet facilities. No sign of an infection control protocol here. The following morning I was told I was to be moved to the MRSA isolation unit to complete my treatment as my room was needed for another highly infectious patient. I was not happy about this as I instinctively felt that my own recovery would be compromised by moving to the MRSA unit where there is a high risk of cross-infection. If my room had been needed for a dying patient, I would have obliged but it was not my fault that the hospital didn’t have an adequate supply of individual isolation rooms for infection control. I’m afraid I dug my heels in and refused to move despite the huge pressure applied. I’m usually a very amenable sort of person but on this occasion I’d had enough and wasn’t prepared to risk my own health to facilitate any bed manager. Once the fuss had died down, I was quietly told that I’d earned huge admiration from the medical staff for standing up to the powers-that-be at the hospital.

As it transpired, several weeks later I was again re-admitted to the hospital having developed chronic osteomyelitis in my skull and on this occasion I did end up being transferred from A&E to the MRSA isolation unit. I’ve already written about the slack infection control policy here in another post. This unit was everything I’d feared, and worse but after weeks of treatment there I did get the necessary all-clear to be allowed to complete my treatment elsewhere. I assumed I was being transferred to a single room but you can imagine my horror when I found I’d been put back into the same 5-bedded ward where two months previously, I’d first received the diagnosis of MRSA. I again instinctively felt that I posed an infection control risk to the post-operative patients in the neighbouring beds. Despite a fear that I’d be transferred back to the awful isolation unit, I pointed out my concerns to the staff and luckily for me on this occasion, a single en-suite room was quickly made available. This action however sadly confirmed that my concern was justified.

It really is hard to believe the ignorance and confusion that still exists in the whole area of infection control. Comprehensive updated guidelines have been drawn up but they cannot be implemented because of inadequate resources, sub-optimal infrastructure and a lack of access to relevant expertise locally. Laboratories are chronically understaffed and cannot maintain even routine diagnostic work. MRSA is a huge problem that’s not going to go away unless infection control is properly tackled. In the meantime, the response from the HSE has been to spearhead a campaign to place the onus on patients to ensure that medical staff have clean hands. Proper hand hygiene is a major factor in stopping the spread of MRSA but it should be part of a multifaceted approach. If Ireland is to reduce it’s incidence of MRSA, the HSE needs to stop playing silly games with our lives and declare war on the superbugs.

Blog Awards

The Biopsy Report has been short-listed!

And the red carpet has been rolled out!

I was out for most of the day and came home to find ‘The Biopsy Report’ positively bubbling with excitement. This blog has made it through Round 1 of the Irish Blog Awards and it’s been awarded a Vanilla Award!

I learnt this evening that my blog has been shortlisted for an Irish Blog Award, in the Best Personal Blog category sponsored by Microsoft Ireland’s Developer and Platform Group. I’m not often stuck for words, but this news has left me flabbergasted. I am humbled to be listed alongside some eminent bloggers whose blogs I already admire and enjoy enormously. I am also proud to appear on this particular shortlist as thanks to the huge expertise of Damien Mulley, the Irish Blog Awards now have an impressive judging system in place. All of the nominated blogs have been assessed by a panel of judges and advancement to the final round, was based solely on merit. This is not a popularity contest and so I happily recommend you pop over to the Irish Blog Awards to have a look for yourself.

Then the absolute icing on the cake today, was to receive a Roar for Powerful Words award from Absolute Vanilla…(& Atyllah). Vanilla is a writer of enormous talent and her beautifully illustrated blog has a huge following of loyal fans. When Vanilla first left a comment on my blog, it blew me away totally. She has a powerful and very moving way with words and I feel privileged to be able to share in her world. I can highly recommend a visit to her blog.

When I started writing this blog last year, all I knew was that I had a story to tell as a result of my experiences as a long-term patient. I was a total newcomer to blogging but thanks to masses of help and encouragement from my son, Robin, I soon discovered a whole new and exciting world. I never could have imagined that the blogosphere would turn out to be so much fun. If you’d told me that I’d get a thrill out of hitting a button that says ‘publish’ or ‘submit comment’, I’d have laughed at you whereas now I’ll happily admit that I’m totally addicted to pushing those buttons. I’ve found friends, companionship, humour, insight, wisdom, interest, and much more through blogging. Thanks to everyone who’s contributed to this fun and I’d especially like to thank Absolute Vanilla and the Irish Blog Awards for giving ‘The Biopsy Report’ a real reason to be proud. I salute you all.

Exceptional Qualities

Chronic illnesses usually are viewed negatively, particularly in relation to employment. Society makes a sharp distinction between being sick and not being sick. The general image of health and sickness has resulted in sick people being negatively labelled. It’s important for employers to realise that people with chronic health problems have unique qualities and additional talents to offer. This inner strength can be a great asset to society if only it could be properly recognised.

I recently came across a report on the exceptional qualities of people with chronic illnesses produced by a patient’s organisation in the Netherlands. It describes people with chronic illness as:

* being good at crisis intervention

* having stamina and persistence

* being good organisers

* being good at personal energy policy and setting priorities

* being good at time management

* having the strength and willingness to shift boundaries

* being more patient and tolerant

* having a strong sense of responsibility toward society.

Most employers would jump at the chance to recruit someone with the above qualities, however they may be worried that people with chronic conditions will always be “off sick”. The reverse is often the case. Chronically ill people know their responsibilities and can set clear boundaries for themselves. People who face adversity on an on-going basis become remarkably adept at finding solutions. They have the potential to become valuable employees whereby the advantages outweigh, if not surpass, the disadvantages. The biggest difficulty faced by many people however is finding a way to convince potential employers to consider employing someone who represents a risk.

Are you an employer who’s willing to take risks? If so, I can be contacted at biopsyreport@gmail.com

I’m ready when you are! 🙂

Finding the Plot

Illness teaches us some remarkable lessons. Many of us go through life at such a pace, we rarely have time to dwell on the simpler things in life. We spend our days endeavouring to keep up with the demands of everyday life and it’s all too easy to lose the plot. When serious illness strikes, life is taken out of our control and we are forced into slow gear. For me, this has resulted in hidden benefits which have been beyond my wildest anticipation.

My medical history has taught me to expect the unexpected. This does not mean that I sit out my life waiting for the next thing to go wrong. Now, I’m no saint but I have learnt to appreciate the good things in life and to go with the flow when things aren’t so great. I’ve also found out who my real friends are and who I can rely upon for help, without needing to ask. I think one of the most important things I’ve learnt is that most people only ever want to hear that you’re well. I’m referring to that glazed look given in response to someone rabbiting on about their latest medical drama. When asked about my health, I will always respond positively even when the going is tough. If someone really cares enough they’ll probe further and if they don’t, then I’m not missing much anyway. I have experienced so much stop/start to my life through illness, it no longer holds any drama for me. Only those who need to know are informed. I know that if I showed my hospital CV to some of my family and friends, they would be astounded. That’s another lesson illness has taught me. Families are not necessarily the most supportive when recurrent illness strikes. A once-off event is fine and lots of fuss will be made but don’t expect to get sympathy on a regular basis or you might be in for a surprise. I’ve come to the conclusion that chronic illness is sometimes seen by others as some kind of failure and thus it is not openly acknowledged. I’ve been lucky in that my immediate family are very understanding and supportive and I also have some amazing friends who I never, ever have to ask for help. I used to despair over some people’s odd reactions to illness but these days I see that sort of behaviour as their problem, not mine and I’ve learnt to let it go. Illness does have some bonuses. Adversity sometimes brings out strengths you never knew you possessed and this all helps to ease the lonely journey. Illness has certainly helped me to become more insightful and I find this invaluable in everyday life. When life grinds to a halt, I get to see the world through different eyes. I have referred to this in the past as discovering magic and I can assure you that life takes on a whole new perspective. I’m not a particularly religious person but I’ve been left with a profound belief that I am not only incredibly lucky, I also think I’ve found the plot in life.

It’s a real privilege and a self-indulgence to have the luxury of this forum to share my experiences of illness with anyone who cares to read my story. I’ve received some lovely comments in response which I treasure and for which I’m truly grateful. In early January this year, my blog was short-listed as a finalist for a worldwide Medical Blog Award (Best Patient Blog category) and I was honoured to be the only Irish blog selected. Last week I was nominated for an Irish Blog Award (Best Personal Blog category) which again, is a totally unexpected bonus. I’ve put my story into words in the hope it will help others to see that there’s two sides to every story. My medical saga may not have ended but I live in hope of better times ahead, secure in the knowledge that I can cope with whatever comes my way.

I have one final plea which comes from the heart. I’d like to take the liberty of reminding you to reach out to anyone you know who may be unwell – it doesn’t matter how large or small the gesture is – I simply plead with you not to wait to be asked to help. There’s nothing lost, but plenty to be gained. Take it from one who knows!

Money Talks

I listened with interest yesterday to an interview on Newstalk radio about in-patient services for acute psychiatric patients. This interest soon turned to outrage when I heard about the latest insult inflicted on psychiatric care in this country.

St. Ita’s Hospital in Portrane, Co Dublin was built in 1902 to cater for long-stay patients with intellectual disability. It is also the centre for acute psychiatric in-patient care in Dublin north. These facilities have been massively ignored by successive governments over the years and allowed to deteriorate to the point of neglect. It is no coincidence that the complex is on prime development land. Negotiations were started with the Dept of Health as long as 20 years ago, to agree a plan to move the acute psychiatric unit to a new purpose built facility in the grounds of Beaumont Hospital in Dublin. Dr. Richard Blennerhassett, clinical director at St. Ita’s has personally been fighting this battle to improve services since he took up his post in 1998. Agreement was finally reached, the plans were drawn-up and planning permission was obtained for this unit to proceed. It has recently emerged that the plot of land allocated for psychiatric services at Beaumont Hospital has been re-allocated to the building of a new co-located private hospital on the site. St. Ita’s now has to return to the drawing board to start the process all over again.

Frankly, I think this matter stinks. Yet again some of the most vulnerable members of our society are being disadvantaged in favour of private (for profit) health care. Our Minister for Health is insistent on driving forward a 2-tier health system in this country while the public health service continues to crumble. The concept of building co-located hospitals on the grounds of public ones is a recent one. The plans to move services out of St. Ita’s have been on the agenda at the Dept of Health for over 20 years. I’ll let you draw your own conclusions.