A Force for Change

If you’ve read this blog before you’ll know that I’m continually harping on about the crisis in the Irish health service. Put simply, the public health system in is melt-down. When the HSE was first set up, we were promised better services – we got patients on trolleys. We were promised better conditions for health staff – and we got a jobs freeze. We were promised value for money – we got mismanagement and dictat. Yesterday, I was given reason to believe that this health crisis will not end in catastrophe.

An estimated crowd of over 4,000 people turned out in Dublin to demand a better public health service. People travelled from all over the country to take part in the rally. It was the first time that patients, consultants, hospital staff, unions and patient pressure groups all came together to declare “Enough is Enough” and demand a decent public health service. The Irish Nurses Organisation (INO) and Irish Medical Organisation (IMO) gave their support. Eamonn Gilmore (leader of the Labour Party), James Reilly (Fine Gael health spokesman) and the Lord Mayor of Dublin all participated in the rally. The march was well-organised with the Gardaí providing an escort of outriders to facilitate movement of the large crowd through the city centre to Government buildings where the rally was addressed by speakers representing each of the groups.

ConorMacLiam, gave a very moving address to honour the wishes of his late wife, Susie Long. Susie’s untimely death last year was brought about by the direct failure of this government to provide an equitable health service for all. Conor claimed that as many as 5,000 people are dying each year as a result of cutbacks and delays in the health service. He also told us that the government has plans to privatise hospice care in this country. This government is determined to pursue against all advice, a policy of privatising the public health service and now we hear that it also plans to develop a 2-tier hospice service. How nauseating is that?

For me personally, there were many highlights to the day. I thoroughly enjoyed the camaraderie of the crowd as I walked alongside young and old, from all walks of life but all united in determination to fight for a better health service. They all had stories to tell of their travails with the health service. I was also encouraged to see two emminent hospital consultants join the rally and take to the stage to give their views on the health service. Prof. John Crown, a consultant oncologist, confirmed that we have been sold a ‘pup’ by this government in terms of healthcare and very soon when we enter a hospital it’ll be a case of “Turn Left” if you’ve health insurance and, “Turn Right” if you’ve not. Prof. Orla Hardiman, a consultant neurologist and spokeswoman for Doctors Alliance (a lobby group formed in 2007 that advocates for better public healthcare), warned that we should be careful to support and protect those elements of the public health service which work well in serving the sick. Otherwise, the government will use the constant whining from the public as further reason to privatise healthcare in this country. I thought this was an excellent point. There are lots of good aspects to our health service and we need to preserve and protect them from government interference.

Susie Long went public in the final year of her illness to highlight the inequities in the system. She turned her own personal tragedy into a force for positive change. She helped to motivate me and many others, to do more to highlight the failures within the health service. I was determined to be there yesterday to honour Susie’s memory and I can honestly say that for the first time in a long while, I felt the tide may be turning. Hopefully, this rally will prove to be the catalyst for change.

Enough is Enough

If you’re sick of our health service, or lack of one, here is your opportunity to campaign for better healthcare. A march and rally has been organised in Dublin to demonstrate public dissatisfaction with the health service. The time has come to show the Minister for Health that enough is enough!

An umbrella group of health unions and patient campaign groups are urging the public to come out in large numbers next Saturday 29th March, and support the march. The rally will assemble from 2.30pm at Parnell Square, Dublin where it will be addressed by speakers, before proceeding to Molesworth Street.

The following speakers will address the rally:

Prof. John Crown, Consultant Medical Oncologist

Conor MacLiam – husband of the late Susie Long

Representatives from the following groups will also contribute:

Doctors Alliance for Better Health Care

Irish Nurses Organisation (INO)

SIPTU

Health Services Action Group

Patients Together

MRSA and Families

Recent cutbacks in government spending have resulted in further suffering for Irish patients. Our government has failed miserably in it’s commitment to deliver an equitable health service based on need. The bureaucrats within the Dept of Health and the HSE should be shamed for the long litany of dysfunction within the health service. Patients have suffered for too long without the basic healthcare they deserve. It’s time for change.

Please support this march to show you care. I’ll be there – will you?

Memory Lane

This day last year, I boarded a Ryanair flight to Nottingham with a bag packed with enough things to last for six weeks. I had no idea how long I’d be away and yet I only had one spare set of clothes packed. This was no holiday. I was en route to an NHS hospital to undergo major surgery on my skull.

I had travelled over to Nottingham a few weeks earlier for a pre-op assessment and was therefore permitted to present myself for admission on the day of the operation. Because of my history of recurrent MRSA infection, I had also undergone a thorough screening process in Ireland in the weeks leading up to the surgery and had received the requisite all-clear. I was warned however, that if any active MRSA infection was found in my skull during the operation, I would have to remain in the UK for long-term intensive IV treatment.

My husband and I booked into a little hotel in the city centre the day before surgery and shortly afterwards, set off on a walking tour of Nottingham. We found an open-air music festival in progress in central square and sat in the late afternoon sunshine to enjoy the music and dancing. Knowing that we had a very early start the following day, we opted to eat in a lovely little French cafe/bar which we’d spotted on our walk. We had a delicious meal and I well remember sipping my wine that evening and thinking how surreal the whole situation felt. So far, so good anyhow – our wind-down for the ‘big’ day was going well. We returned to the hotel and having prepared everything for a quick departure in the morning, we hopped into bed early hoping for a good night’s sleep. I had taken the precaution of bringing sleeping tablets to make sure that both of us crashed out that night. We did but not for very long. Unfortunately, I’d forgotten to turn my mobile phone to silent and about an hour later, we were both woken from a deep sleep by my phone bleeping. It was a message from a relative, wishing me well for the following day. A kind gesture but by now I was wide awake and couldn’t get back to sleep. I lay there for hours thinking about what lay ahead and eventually decided to give up on sleep and instead treat myself to a final brew of coffee. I had been asked to fast from food and drink from 4am onwards so there I was at 3am, feasting on a breakfast bar and a delicious mug of strong coffee. I was ready to depart for the hospital at least two hours ahead of schedule.

It was a long day but all went well, apparently. I can’t remember much of it. The surgery on my skull took about four hours to complete and I was patched back together with 59 staples across the top of my head. The following morning the surgeon appeared at my bedside and informed me that during the surgery, three separate abscesses had been found in the front of my skull. If any of them tested positive for MRSA, I was there for the long haul. He also told me that my hair had been washed and dried at the end of the operation as it was matted with blood. I remember having a good laugh about this and asking if there would be an extra charge for his hair dressing service. He then proceeded to pull a drain out of my skull which I hadn’t even realised was there.  My head was very heavily bandaged and felt completely numb following the surgery but I will never forget the sound and the sensation of having that drain removed. It was horrible. However, I really didn’t care about anything much at that stage as it was such a relief to have the operation safely over. The next day the surgeon came back into my room with a big smile on his face and announced that the lab reports had all come back showing the bone specimens to be sterile. No MRSA was found. I would be free to go home as soon as I was well enough to travel.

I arrived back in Ireland, albeit in a bucket, just in time for the arrival of summer. Last year we had hot, sunny weather for the whole month of April and then it seemed to rain on and off for the rest of the summer. The sunshine proved to be the best get well present ever and to me, it’s still shining. You see, the MRSA infection which had dominated my life for two years, has never returned.

Tomorrow, Monday marks exactly one year since that operation. Writing this post has been a real trip down memory lane but now, as I’m sure you’ll be relieved to hear, the time has come to lay this story to rest. Rest in Peace, MRSA. I bid you farewell.

A Lifeline

Anyone who’s ever read a book they can’t put down, will know exactly what I mean by compulsive reading. The story draws you in and you find yourself totally captivated until the last page is reached. Well, last night I found myself in exactly the same situation only on this occasion it wasn’t a book I was reading. It was blog and it’s stunning!

On looking through my blog stats, I noticed several visits from a referrer called Distant Rambler. I didn’t recognise this name and on investigating further, I couldn’t believe my luck at the blog I’d found. It’s beautifully written, very moving and is totally spell-binding. I can honestly say that of all the blogs I’ve ever read about patients and their medical stories, this one stands out way above the rest.

This inspirational blog is written by Laura, a 28 year old with a PhD, who is presently in hospital undergoing treatment for ALM, an acute form of leukaemia. It is in effect, cancer of the blood. This is not Laura’s first time tackling ALM as she was first diagnosed with leukaemia when aged just 12 years. Her cancer recurred last year but this time she has also had to battle a tumour on her back. She spent her birthday in isolation and also missed out on a family wedding. It takes pure grit and determination to achieve a PhD and these qualities shine through in her approach to her illness. Laura has recently undergone a bone marrow transplant (BMT) and is presently back in isolation, counting down the days until her release. She writes her blog like a diary, detailing all the daily ups and downs of her journey with cancer. Her story is written with such clarity and honesty, it’s quite breath-taking. Put simply, Laura’s life is on the line. She has spent a great deal of time in hospital undergoing intensive chemotherapy and despite suffering many setbacks along the way, she still manages to find humour in her situation. I love her writing – Laura does not beat about the bush, she gives it to you as it is. She is incredibly brave in the face of adversity and deserves huge admiration.

Today is Day 17 post-transplant for Laura – she received her third bone marrow transplant on 29/02/08 and has spent the last 17 days in complete isolation. Today is also St. Patrick’s Day, a day when Irish citizens are celebrating around the world. Laura is too ill to celebrate but through her blog, she still managed to wish everyone else a happy day. Her laptop is her lifeline, her contact with the outside world. Her blog provides her with a welcome breathing space from her illness and continuing treatment. Laura is feeling very low at the moment. Please, could I ask you to drop by her blog and let her know that you are thinking of her. You will be, quite literally, throwing her a lifeline.

I hope tomorrow is a better day, Laura.

Emotional Storm

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.

Dementia Happens

Old age has no respect for class, creed, fame or fortune. It’s an inevitable process… that is… presuming you get to survive that long.

By 2030, almost a million people in Ireland will be over 65 and the older you get, the more likely you are to suffer from dementia. There are approximately 38,000 people living with dementia in Ireland today.

There is no immediate hope of a cure for Alzheimer’s disease and with Ireland’s ageing demographics, it makes sense to plan ahead for the needs of an ageing society. A new study has found that people with dementia in residential care need to feel safe, secure, occupied, at home and connected to their former lives. Sadly, for the majority of the 7,000 dementia patients in residential care today, very few actually benefit from specialised dementia units.

My 80 year old mother has been in full-time care since 2004. She is wheelchair bound due to severe osteoporosis and also suffers from an unusual presentation of dementia. She is totally dependent on others for her everyday needs. For her first two years in the nursing home, my mum was terribly unsettled and became very depressed by her increasing dependency on others. Her dementia left her unable to follow simple instructions and she had frequent falls when left alone. The family were advised that she would be safer if moved to the dementia unit within the home where she could be constantly supervised. We agreed to this plan and shortly afterwards, she moved into the secure unit where she settled in very well. The care is fantastic there but the conditions are far from ideal.

This dementia unit is a locked unit for women only, with it’s own dedicated and very caring staff. It is basically one long, narrow, open-plan room where eleven women are living out their final days in horribly cramped conditions. They have to eat here, sleep here, are washed and toileted here, entertained and most likely will die here too. This poorly ventilated, overcrowded room is their home. Personal space consists of a bed, a bedside locker with tiny wardrobe attached and enough room for a chair beside the bed but nothing else. The unit has two small toilets neither of which are wheelchair accessible so only the few who are mobile, can use them. The residents in wheelchairs must use commodes with the curtains drawn around their beds for limited privacy. Some of the residents are bed-bound and are doubly incontinent. Meals are served up in this environment at two small tables at the end of the room and most of the patients must wait their turn to be spoon fed by the staff. The only form of entertainment is a television and a DVD player which were donated by the family of a deceased patient. A CD player was recently purchased by the ward manager so that the ladies can enjoy calming background music with their old-time favourites played over and over again – not that anyone would notice. There are many different levels of dementia in the room. Some of the patients have withdrawn from the world and just lie or sit staring into the distance all day, every day. Others are agitated or aggressive and have to be carefully managed so that they do not upset the other patients.

Dementia is not a pretty disease. There is little or no communication between the residents of this unit. This fact nearly broke my heart when my mum first moved in as I felt she was being denied a basic right to enjoy the pleasure of interaction and would deteriorate rapidly as a result. To give the staff credit where credit is due, they were quick to recognise this problem and they go to great lengths to chat with her as they go about their duties. I must add here that the staff are wonderful and I have huge admiration for the work they do in very difficult conditions. They look after all the patients with great love and compassion and I know my mum is very lucky to be in such good care. I regard the staff as part of the family these days – we work together as a team through thick and thin.

The world of dementia is a frightening and bewildering place for sufferers. My mother is safe and secure in her present surroundings but her environment leaves a lot to be desired. It does not resonate of home and it is poorly adapted to compensate for the disability of dementia. How would you like to end your days in a shared room with minimal privacy or dignity afforded? We need to take a more holistic approach to dementia by providing social, psychological and environmental supports and not by just throwing drugs at it. Surely, with the booming economy we live in today, this vulnerable section of society deserves better?

A Vat of Porridge

Olivia O’Leary in her political column this week explains why she doesn’t like waking up these mornings. She is suffering from survivor syndrome. I admire her honesty.

http://www.rte.ie/podcasts/2008/pc/pod-v-040308-5m15s-drivetime.mp3

You see Olivia has private health insurance which allows her to skip the queue in order to get a quick diagnosis, while public patients must wait. She is uncomfortable with this fact, she knows it’s wrong but given the dangers of hanging around on a public waiting list, she feels she doesn’t have any other choice. She describes the Irish health service as being like a great big vat of porridge – a squidgy bureaucratic mass in which our Minister for Health is floundering around, desperately looking for something to hold on to.

I was disgusted yesterday to listen to Mary Harney and Brendan Drumm apologising to the women involved in the breast cancer misdiagnosis scandal of last year. Of course those women have my sympathy but this was obviously just a publicity stunt to distract from the appalling deficiencies within the HSE, as shown in the recently published reports. The apologies were so insincere as to be nauseating. Where are the apologies for the thousands of Irish patients who have been let down by our health service? Nobody has ever apologised to me for the fact that my life was turned upside down as a result of contracting an MRSA infection from the Irish health service. And of course nobody has been blamed for any of the failures in the service, we’re told that it’s a ‘system’ failure. It’s a whitewash – there is no accountability within the HSE.

Poor Goldilocks. I can’t ever see a time when her porridge will be ‘just right’.

Going Slow

I had to take to the bed yesterday as I was out of my head on drugs. Eh…prescribed drugs, that is, the sort used to alleviate acute back pain. I wasn’t alone in the bedroom either. Lots of people shared my bed and they were great company. You see I had a laptop on the other pillow so that I could keep an eye on the world. A big thank you to anyone who left a comment yesterday. It was the best tonic ever.

I returned from the GP’s surgery weighed down with pills and potions. I felt so spaced out on the new medication, I decided not to attempt to blog yesterday. Who knows what I might have said!!! I was prescribed some pretty heavy duty painkillers which when combined with Valium (an effective muscle relaxant) makes for a heady dose. My lower back is still rigid with spasm so the aim now is to break the cycle of pain with a constant top-up of the ‘fix’ until my back heals. The pain level is definitely less acute at rest today but when I move, it ain’t good. My doctor concluded that the problem is most likely a torn facet joint on one side of my lumbar spine. The pain definitely has a different sort of presentation to the back pain I’ve experienced in the past. The Doc was confident that it is not a ruptured disc so at least that was some good news. Treatment is conservative for now with rest and pain relief. Physiotherapy may be required at a later stage to strengthen up my back. My GP doesn’t think that this problem is related to the steroid treatment I’m on though he did opt to reduce the level of cortisone as a safety measure, and substitute it with something else. Years ago, I ended up in severe generalised joint pain following a short course of oral corticosteroids so extra caution is no bad thing.

You know this back spasm thing is a very strange business as my arms seem to have shrunk in length. I’ll leave you to work out how I discovered this 😉

So I’m staying put today. Not a lot of choice in the matter actually. I can’t get out of first gear.

Thanks again. I’ll be back…

It Never Ends

I’m in the wars again. Last month I was started on a potent steroid treatment for a medical condition unrelated to the connective tissue disorder (EDS) from which I suffer. The treatment has worked well for the purpose intended but it appears to have had some unwelcome side effects.

Last Saturday morning while out walking on rough terrain, I twisted an ankle while coming down a stony track. I have always stumbled a lot as my joints tend to collapse easily due to poor proprioceptive response. I have the hypermobility type of Ehlers-Danlos syndrome where lax ligaments are a classic feature. I’ve lost count of the number of times I’ve torn/sprained ligaments. However, on this occasion I escaped with only a mild sprain and was able to walk gingerly back to my car. This incident could easily have spoilt my chances of making it to the IBA awards that same night but luckily, I was fine and thoroughly enjoyed the ‘outing’ although my ankle was very swollen the following morning.

I awoke today with pain in my forehead and an obvious sinus infection so the day did not get off to a good start. Over the last few weeks I’ve noticed that my lower back has become progressively weak. I’ve found myself having difficulty getting up from sitting or bending and today my back finally gave way when I leant forward to do some very minor task. My lower back immediately went into acute pain and spasm and I knew instantly that I was in significant trouble. I’m well-used to back pain having developed an unstable pelvis during my last pregnancy. I spent the final three months of that pregnancy on crutches with my pelvis tightly strapped in a special brace to support a rapidly expanding girth. Ever since those days, I’ve suffered from chronic pelvic pain and recurrent tears of the sacro-iliac joints. Today’s pain in my lower back is somewhat different but very acute none the less. If I were to stop my life every time I experienced joint pain, I’d never get anything done so this morning I simply took a couple of powerful painkillers and hoped for the best. I eased myself into the car with difficulty and drove to visit my parents in their nursing home. A stupid decision. By the time I’d arrived, I could hardly get out of the car and was in such pain I could barely walk/talk, let alone push my mother around in her wheelchair. I only stayed a short while before making the painful journey home again. I found myself approaching traffic lights slowly in the hope they’d go green in time to avoid braking. I normally despise drivers who behave like this but after today’s difficult journey, I hope I’ll be a little bit more compassionate to other road users in future.

My conclusion to this tale of woe is that I’m highly suspicious now that the steroid treatment has affected my normal levels of resistance leaving me susceptible to infection and joint instability. I might be entirely wrong about this and I’m sure my GP will be able to advise further. I may not have been blessed with good fortune when it comes to health matters but I do have good powers of recovery so I’m confident I’ll be back on track in no time. I usually keep quiet when in pain and only confess to it, if and when I have to. Tonight, I’ve used the luxury of this outlet to offload my frustration. I don’t need sympathy thanks, just understanding. Thank you for listening.

Proud Mum

Wow! That was some surprise last night. I attended the Irish Blog Awards as a finalist in the Best Personal Blog category and ended up collecting the winner’s prize for the Best Technology Blog. And I know nothing about technology!

My son, Robin, was the overall winner of the Best Technology Blog award for his personal blog ByteSurgery. It was a well-deserved win but then I would say that, I’m his Mum and I’m allowed!

Robin is based in Singapore this year so couldn’t be present on the night. Over the years, he’s won many awards so I suppose I should have known better and had some words prepared for last night, to accept the award on his behalf.

So, Robin – sorry to embarrass you but here’s what I really wanted to say had I not been so overcome by stage fright…

Congratulations! I’m not in the least bit surprised you’ve won this award. Your technological skills constantly amaze people wherever you go and when combined with your innovative and leadership skills, you have the potential to go far, my boy!

I remember so well that as a baby, you hardly slept at all and you had us all exhausted by your ability to keep going and going. People would try to reassure me by saying that it was the sign of a very active brain. Active? It never bloody stops! And all your wonderful achievements in life so far are testament to this.

You are the reason that I got into blogging. You recognised in me a story needing to be told and I’ll never be able to thank you enough for pushing and cajoling me to start writing. I’ve never had so much fun in my life!

I’m very proud of you, Robin. Thank you for giving me another great reason to celebrate this Mother’s Day.

Keep up the great work. My nursing home depends on you!

I’m also really delighted to add that the category my blog was nominated for, was jointly won by Grannymar and Head Rambles (Grandad). I couldn’t have wished for a more fitting outcome. Their blogs are fantastic and they both hugely deserved to win this award. If you haven’t already done so, I highly recommend you go visit them.

Go! Grannymar and Grandad, Go!

Important Update: I forgot to thank my wonderful escort, and very skilled taxi driver for last night’s awards.

Thank you Poppy. You make Mother’s Day all the more special! 😀