Patients know best

March 31, 2010

Had you been wondering where I’d disappeared to? Sorry about that. My elderly parents are in need of an extra helping hand right now so I’ve been otherwise occupied. I’ve also had the little business of an operation to recover from and that’s kept me somewhat quieter than usual. This week, it’s definitely been a case of Steph nose best 😉

Recovery from surgery can usually be measured in steps. You know the way it is… two steps forward, one back until you’re over the worst and then it’s generally steady progress from then on. My recovery on this occasion has taken on a different pattern. The first 10 days post-op were the easy bit and it’s been a bit up and down since then. If there’s one thing I’ve learnt over the years as a patient, it’s never to doubt myself when it comes to reporting symptoms.

I requested another appointment at the hospital yesterday as I sensed something wasn’t right. The consultant examined my head endoscopically and was able to confirm my suspicions. Despite daily wash-outs since the surgery, the inside of my head had crusted up again and was in need of further Spring cleaning. I continued to insist that I could also smell decay. After working on my head for some time, the culprit was soon identified. The donor site for the graft was to blame. Some dead cartilage was visible on one side of the nasal septum where tissue had been removed and rotated upwards into my forehead, for grafting. Once this decaying cartilage had been cut away yesterday, my airway felt very much better. I was patted on the back for my skills of detection and sent on my way with a request to return if symptoms recur.

The culture of healthcare is thankfully changing from one of paternalistic medicine to one of participatory medicine. Everyone is better off when patients are encouraged to engage with the medical profession.

Patients Know Best is actually the name of a company whose website is already integrated into the NHS secure network and helps UK patients with chronic diseases, to manage their health care.


Emotional Storm

March 12, 2008

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I watched a television programme recently about Irish patients with cancer. Any journey with cancer is an emotional roller coaster and this programme was no exception. My emotions were completely raw by the time it was over. One particular scene strongly resonated with me and brought back a memory I’d completely forgotten about.

The programme did not make for easy viewing. If you had recently been diagnosed with cancer or had suffered a bereavement, I would imagine it must have been very difficult to watch. We were not spared the stark reality of cancer. One fine lady with a wonderfully positive outlook on life, was given the news that she had advanced terminal cancer which was inoperable. She amazed me in the way she took this terrible news totally in her stride. She died a few short months later. We watched another elderly man who had been diagnosed with rectal cancer, undergo pre-operative radiotherapy and chemotherapy to shrink the tumour before surgery could proceed. Thankfully in his case, his operation was totally successful and no further treatment was required. It was his return home that resonated with me. As I watched him sit down in his favourite armchair while his wife went to put the kettle on, I witnessed him experience the realisation of how good it felt to be finally safely home.

When I returned by air last year following complex surgery in the UK, I will never forget the emotional storm which took me completely by surprise as the wheels of the plane touched down. I’m not particularly patriotic about my country of birth but on this occasion I was never so glad to be back in Ireland. In preparation for the surgery, I had put meticulous plans in place so that life would run as smoothly as possible during my absence from home. Any thoughts on the experience that lay ahead never went further than hoping for a successful outcome to the surgery. It was a particularly risky operation but all went well thanks to the expertise of the surgeon involved. My post-op stay in the NHS hospital also went smoothly and before I knew it, the day arrived when I had to make the long journey home. Unfortunately, I became unwell on the way from the hospital to the airport and had to be wheelchair boarded on to the plane. This experience taught me a great deal about the difficulties faced by disabled people in dealing with the ignorance of those lucky enough to be able bodied. I found the flight home exhausting and it was a relief to see the night-time landing lights come into view. As the plane touched down, I was overcome with emotion and burst into tears. I think at that moment I had the same realisation that the elderly man with cancer had experienced. I’d been able to plan ahead for most eventualities but the one thing I hadn’t contemplated, was the enormity of the relief to have survived the ordeal. I can’t tell you how good it felt to be home.


Nursing Care in Hospital

September 19, 2007

I was referred to the UK earlier this year to undergo surgery in a specialist unit at an NHS hospital. This operation was unavailable in Ireland unfortunately so I had to pack my bags and head across the water to the unfamiliar territory of the NHS. Having ‘done time’ on numerous occasions in Irish hospitals, I was interested to see how the UK would compare. The conclusion I came to was that nursing care in the NHS has ‘gone bananas’.

My first impression of the hospital was a good one. On admission, my immediate surroundings appeared spotlessly clean and modern – a far cry from the appalling conditions found in many parts of the Irish health service. I was allocated a bed in a tiny room (no en suite facilities) beside the Nurses’ Station – this room had glass doors to it to facilitate observation of the patient. I thought that this easy visibility would limit any hope of privacy but in fact, it worked to my advantage. The glass doors provided a ‘bird’s eye’ view of the daily activities of the ward staff and this was a source of much entertainment throughout my stay. I did wonder however if the fact that I was a ‘Paddy’ with a history of previous MRSA infection (and recurrence) might not be the real reason why I’d been put in this room. Anyway, I was duly installed as a patient and was whisked off to theatre a few hours later, to go under the knife.

When I next ‘came to’ I was back in the same little room but this time I had to share it with all the paraphernalia associated with having had major surgery – the drips, drains, monitors etc. I lay there in a morphine-induced stupor in full view of the nurses and watched the world go by. I waited and waited for a nurse to appear at my bedside to offer some reassurance but as time went on, I realised that this was a false hope. The nurses only came into my room whenever they had to record my vital signs and even then, there was little or no personal interaction. It was like as if the patient was superfluous to the job in hand. When I was originally diagnosed with MRSA, I was barrier nursed but now this was different type of isolation. I could see endless activity at the nurses’ station with nurses filling out forms etc. but it appeared that very little time was actually spent with the patients. In Ireland, the nurses generally (though not always) interact well with their patients despite also being very busy. It soon became obvious that huge differences exist between our two healthcare systems in terms of nursing care. The NHS may be better in some respects than it’s counterparts here but it lacks the personal touch that thankfully still exists in Ireland. I cannot complain about the medical care I received from the NHS but the standard of nursing left me cold. Not once during my stay did any nurse ask the simple question of “how are you today?“. My medication was dispensed at regular intervals throughout the day without any explanations given. I simply wasn’t consulted at all. And there was definitely no humour to be had despite my best efforts to attract a smile. I have a lot of experience of spending time in hospital and so I’m not easily unnerved by hospital procedures but I can still imagine how frightening it must be for inexperienced patients to be left alone to cope in an unfamiliar environment. I appreciate that nursing these days is very hard work and sadly, it is also often a thankless task. However I’m in no doubt that patient care is compromised when nursing loses it’s personal touch.

After several days of observing the activities of the NHS, I devised a plan to put the ‘system’ to the test. Every morning a junior nurse would come into my room to offer a simple breakfast menu of “Weetabix/Cornflakes, Tea and Toast?“. The choice never varied. Each item of food dispensed had to be ticked off on a list by the nurse. I decided to ‘rock the boat’ one day and request a banana with my cereal. The nurse looked at me in despair having studied the menu, and replied “we don’t ‘do’ bananas at breakfast time“. It was hard not to laugh at this reply but I persisted in my request (out of sheer devilment) and the nurse got more and more flustered as she continued to scour her list for a ‘banana’ box to tick. Eventually I had to tell her that I knew that there were bananas in the ward kitchen and all she had to do was to walk a short distance to fetch one. After a long pause, she left the room and returned with the said banana. I felt like I’d scored a victory! Sad, isn’t it? But this is the sort of behaviour you’re reduced to when subjected to hospital care that is not patient-centred. This is a small, but clear example of how target driven the NHS has become. Nursing care it seems, is now all about ticking the boxes. I got such pleasure out of beating the system that day and by the way – the banana was delicious too!


Miscarriage

September 10, 2007

I wrote recently on the subject of miscarriage and commented on how things have changed for the better over the years. Well, it appears that hospital practice has yet to change in some hospitals. My heart goes out to the parents in this instance in an NHS hospital in the UK. The treatment they received recently following the loss of their baby through miscarriage, is unacceptable. It will have done nothing to help the grief process. When I miscarried my baby son twenty years ago, my husband and I were asked if we would like to see him. He was brought to us lying in a blue injection tray with his tiny little body covered by paper towelling. I remember thinking that this was an undignified way in which to present us with our baby but as I was so overwhelmed with grief at the time, I never commented on it. However, I’ve never forgotten the distressing image of that blue plastic tray and sadly, my experience is in no way unique.

The Miscarriage Association of Ireland some years ago set about addressing this problem in our maternity hospitals. They designed a little fleece wrap to enable babies that have been lost through late miscarriage, to be handed to their parents with the dignity and respect they deserve. Thankfully today, these wraps are now part of hospital supplies in each maternity unit in Ireland. The NHS, it appears, still has a lot to learn.


That’s Life!

August 30, 2007

I heard an item on the radio this morning concerning an article written by the journalist Kevin Myers, in today’s Irish Independent. In this piece he refers to the perfect contours of the late Princess Diana’s nose which, when combined with her appealing eyes, made her into a real photogenic beauty. It started me thinking about the contours of my own nose and forehead which have been altered by recent surgery. My medical history is complex – I’ve had a lot of surgery, in various specialities and have the surgical scars to show for it – but none of these compare to living with a slight facial disfigurement.

I was admitted to an NHS hospital in northern England earlier this year to undergo a complex operation at a specialist Head & Neck surgical unit. This surgery is unavailable in Ireland unfortunately. I have a long history of serious sinus infection which has necessitated regular surgical intervention and intensive antibiotic treatment over the years. As a result of this, I now also (surprise, surprise) have a history of recurrent MRSA infection. The MRSA presented itself as orbital cellulitis following my last episode of frontal sinus surgery and this infection manifested into chronic osteomyelitis in the frontal bone of my skull. All surgical efforts to establish drainage from the frontal sinus had failed and despite intensive antibiotic treatment, I continued to develop abscesses in the bone close to the base of my brain. As this had an associated risk of developing into a brain abscess/septic meningitis, I was referred to the UK for assessment. Here I was advised that the most effective way to stamp out chronic osteomyelitis would be to have all the infected/dead bone removed, and an operation called the ‘Riedel procedure’ was recommended. I was fully informed that there would be a cosmetic disfigurement post-operatively and having considered my predicament very carefully, I finally agreed to proceed.

My little friend, the superbug, is thankfully still responsive to a tetracycline antibiotic, Vibramycin (Doxycycline), and this enabled me to obtain the requisite ‘all-clear’ from MRSA screening prior to the surgery. The operation itself went very well and was completed in just under four hours. My head was opened from ear to ear (zig-zag coronal incision), my ‘face’ was peeled back to the bridge of my nose and the anterior and inferior walls (bone) of both frontal sinuses were removed completely leaving a large hollow in my forehead. The margins of the frontal sinus along with the supraorbital rims were then ‘chamfered’ (planed) to make a gentle curve rather than a sharp step out of this hollow. This allows the soft tissue of the face to fall in and line the vacated frontal sinus area and improves the cosmetic defect which results from the procedure. My ‘face’ was then put back where it belongs and the coronal incision was stapled together before a pressure bandage was applied with a drain in situ to minimise haematoma formation. I had no post-operative complications other than vomiting copious amounts of blood when in the recovery room – this had drained into my stomach during the surgery. Ten days later when I had the staples (59 of them) removed from my scalp, the incision was healing beautifully and I was well on the way to making a good recovery.

That all happened five months ago and I remain free of infection. The post-operative numbness of my scalp has almost resolved though it has left behind an unpleasant neuralgia which requires medication. The surgery has left a definite legacy – a facial cosmetic defect. The bridge of my nose ends abruptly where the large hollow begins in my forehead. I’ve got used to seeing my new ‘look’ in the mirror although photographs still tend to take me aback. I’ve also had to get used to having conversations with people, usually strangers whose eyes are firmly fixed on my forehead while they try to work out what’s happened to the contours of my face. I’ve had a few tactless comments but nothing that humour can’t handle. You have to keep things in perspective – I’ve been given a second chance at life – not everyone gets that chance. My surgeon has offered re-constructive surgery (a split calvarial bone graft/titanium plate) in the future but for the moment anyhow I’ve no wish to go there and certainly no wish to invite further trouble. And anyway, I’m proud of my war wound – my husband refers to it as the ‘bomb crater’- it was a hard fought battle and I’ve come through it still smiling 😀

I’ve just gotta face it – I’ll never be a Princess Di. But then, that’s life!


MRSA – R.I.P.

June 6, 2007

Well, my check-up in the UK went great yesterday. The surgeon was happy enough and as long as he’s happy, I’m happy. It’s 10 weeks exactly since the surgery to remove a large section (anterior wall of both frontal sinuses) of the frontal bone of my skull. My head was opened from ear to ear (I’ve a very fancy zig-zag scar across top of head) to gain access to the area. This frontal bone was chronically infected following years of recurrent frontal sinus infection which had been complicated by MRSA.

I had a repeat operation performed in July 2005 and subsequently developed cellulitis around both eyes post-op which turned out to be an MRSA infection. I was to have several more admissions to hospital during that summer (each time going through the A&E ordeal) for treatment with IV antibiotics specific to the treatment of MRSA. I also sadly had to have the stent removed from my skull as it was thought to be a possible source of infection (all in-dwelling catheters are suspect when MRSA strikes). By the end of September of that year, I was still on powerful oral antibiotics but was feeling no better and pus continued to discharge from my head. Blood tests showed that my liver function tests were abnormal, the inflammatory factor (CRP) was too high and I also had developed significantly raised blood pressure. A CT scan revealed that chronic osteomyelitis had developed in the frontal bone of my skull and so I was re-admitted to the hospital (back to A&E again!) but this time I ended up in the MRSA ‘unit’ for intensive IV treatment. This isolation unit proved to be a total nightmare of a place but the treatment received there finally stamped out the infection and four weeks later I emerged delighted to be free, not only from the hospital but free of MRSA as well – or so everyone thought…

Almost a year later (August 2006), an aggressive frontal sinus infection recurred and the pus again tested positive for MRSA. I was gutted. I began to feel that I’d never be rid of the damned superbug! Again I underwent prolonged treatment with powerful antibiotics until I tested negative for MRSA but by Christmas the chronic pain had recurred and a new CT scan revealed that the frontal bone had deteriorated further. This time the bone was described as ‘moth eaten’ (a process that happens when bone dies) and there was evidence of new areas of infection as well. It was at this point that I was referred to the UK, to consult a world-renowned frontal sinus surgeon, as all avenues of treatment available in Ireland (both surgical and non-surgical) had been tried, and had failed. This surgeon recommended a highly specialised procedure (Riedel) to remove all the infected bone. This type of extensive surgery is only performed as a last resort as it results in a cosmetic defect post-operatively but it is a highly effective way to eradicate all frontal sinus disease. I had the operation in March in an NHS hospital and it appears to have been very successful. While the procedure has resulted in some facial disfigurement, this pales into insignificance when compared with the second chance I’ve been given.

Today really does feel like the first day of the rest of my life!


Post-Op á la Ryanair

June 4, 2007

Tomorrow I fly to the UK for a check-up with surgeon following major surgery at an NHS hospital last March. It’s going to be a long day but thanks to Ryanair, not an expensive one. I booked the day return flight online a couple of weeks ago when they had a “free seats” offer. I’ve often checked these offers out in the past and been dissappointed by all the extra charges. I couldn’t believe my eyes when I went to pay by credit card and the total cost was only 2 cents. No extra charges, not even a credit card fee! How good is that? It was so good I went straight back and booked my daughter onto the same flights so that we can have a fun day out together once the hospital visit is over. I don’t often seem to have luck on side but this time I was a winner. Now I’m just hoping that the check-up will go equally well.