A National Disgrace

October 13, 2010

I can’t remember when I last felt so passionate about something.

I don’t have cystic fibrosis (CF) nor am I related to someone who has, but that hasn’t stopped me feeling very angry about the lack of government commitment to the cystic fibrosis community in Ireland. While the Celtic Tiger roared in this country, young adult CF patients were left to suffer in conditions which continue to be described as dangerously inadequate. Many have died prematurely because of the failure of our government to provide them with the care and facilities needed. The plight of the adult cystic fibrosis sufferers in Ireland, is a national disgrace.

Ireland has the highest incidence of cystic fibrosis in the world and should have facilities and services that reflect this unenviable position. Instead of being a world leader in CF care, we fall way below the European recommended standards. The average life expectancy for a CF person in Ireland is the lowest average in a first world country.

The needs of the CF community are straight forward. They need funding to be provided for a dedicated cystic fibrosis unit with fully-trained staff who are knowledgeable about the disease; they need isolation in en-suite rooms where they don’t have to worry about the risk of cross-infection; but perhaps most of all, they need reassurance that when they require hospital care, they will be provided with the means to survive. Is this not the right of every citizen of Ireland?

Cystic fibrosis sufferers are some of the pluckiest people you will ever meet. Why? Because they have been born with a life-threatening inherited condition which leaves them fighting to breathe. CF primarily affects the lungs and the digestive system and becomes more severe with age. They are very susceptible to serious infection and as a result, they require frequent hospitalizations for treatment.

In other countries, CF in-patients are treated in single en-suite rooms to reduce the risk of cross-infection. In Ireland, adult CF sufferers risk potentially life-threatening infections every time they are admitted to hospital as we do not have a purpose-built unit in which to isolate them from other patients, as well as from each other. CF patients are not supposed to interact because of the risk of cross infection.

The plight of adult cystic fibrosis sufferers was laid bare on Liveline last week as outrage mounted about the appalling services provided for those affected. One CF patient after another and their relatives, described the appalling conditions to which they are subjected while waiting for a specialist unit to open at St. Vincent’s Hospital in Dublin, the national adult referral centre for CF patients in Ireland. A common thread to all the stories was that while CF patients are receiving excellent medical and nursing care at St. Vincent’s hospital, the conditions are far from ideal. They are being admitted to 6-bed wards where the nurses are not specifically trained in CF care and where they are exposed to cross-infection and constant exhaustion from being in a shared room. Rest and sleep are paramount when fighting a serious chest infection.

An independent review of CF services in Ireland by Dr R.M. Pollock, published in 2005, found that most adults with CF were being treated in facilities that were understaffed and dangerous. The Health Services Executive (HSE) responded by establishing a multidisciplinary Working Group to undertake a wide-ranging review of the current infrastructure for CF in Ireland. It took the Working Group until 2009 to publish it’s own Report on Services for People with Cystic Fibrosis in Ireland which simply endorsed many aspects of the Pollock Report.

Five long years have now passed since the conditions for CF patients were described as dangerously inadequate and very little has changed. Is it any wonder that they are demoralised about their plight and cynical about the many false promises from the HSE?

Following the public outcry last week, it was announced that building work on the long-delayed cystic fibrosis unit at St Vincent’s Hospital, is expected to start next Monday following the signing of the contract on Friday. The unit, which will be in a five-storey, 100-bed hospital block of which two storeys and 30-35 beds in individual ensuite units, will be developed exclusively for cystic fibrosis sufferers. It will be mid-2012 at least before the doors are opened. I won’t believe it until I see it happen.

Meanwhile, the wait goes on…

Further information:  The Cystic Fibrosis Association


At the Front Line

April 22, 2009

A draft document from the Department of Health has been circulated around HSE managers warning of further job losses in the nursing sector. Staff nurse levels will be cut by 700 this year as part of a move to optimise resources. The Irish Nurses Organisation (INO) has claimed that these further cutbacks will have an unsafe impact on frontline services and that patient care will be compromised. The HSE  is defending the proposal and continues to insist that frontline services will be maintained. I wonder what the VAD nurses would have made of today’s working conditions at the front line?

voluntary-aid-detachment3The British Red Cross Society formed the Voluntary Aid Detachment (VAD) in 1909 to provide auxiliary medical service in the event of war. While it was mostly men who fought on the front lines during the First World War, some women also worked close to European battlefields as nurses. These graduate nurses and members of the Voluntary Aid Detachment – a corps of semi-trained nurses – worked in war hospitals, drove ambulances, and served as cooks, clerks, and maids. Most women who volunteered with this unit were not professional nurses. They attended classes in first aid, home nursing, and hygiene with the St. John Ambulance Association for between three and six months and also volunteered in hospitals, making beds, taking temperatures, and performing other duties. Open-air drills also taught VADs to build and cook on camp fires, pitch hospital tents, and care for wounded soldiers.

The work was physically and emotionally taxing. Nurses worked long hours in crowded and chaotic hospitals treating severely wounded soldiers from the front lines. They slept on bunks, ate rations, and went without the usual comforts from home. Although the work was stressful and sometimes traumatic, it also produced a sense of satisfaction in many nurses by allowing them to make significant and public contributions to the war effort.

Image courtesy of the British Red Cross Museum and Archives.


Get It Right

April 17, 2009

I’m fed-up listening to the mixed messages coming from the Department of Health and the HSE. One minute our Minister is vowing to provide extra beds in the health service and the next we’re being told that we’ve got too many beds. It’s time that Harney and those muppets in the HSE made their minds up.

We have a new chief medical officer (CMO) of the Department of Health, Dr Tony Holohan and in his first media interview since taking up his appointment, he announced that the Irish health system has too many hospital beds. Brendan Drumm, CEO of the HSE, is also peddling the same message. Meanwhile, our Minister for Health’s solution to relieving the bottleneck in A&E, has been to promote private for-profit co-located hospitals as a means of fast-tracking new beds into the system. At the same time, the Dept of Health has deemed our smaller hospitals ‘unsafe’ and is busily closing them down without first adjusting the conditions in the ‘centralised’ units’, with adverse consequences predicted.

The reality is that as things stand at the moment, our health service is in disarray. We have chaos in our A&E departments because of the bottleneck caused through lack of beds. The reason for the log-jam is because our tertiary healthcare services have been neglected over the years and many OAP’s now have no choice but to occupy hospital beds long term. Instead of Harney wasting her time and our money on privatising healthcare in this country, the focus should be put on developing primary care. Nobody refutes the fact that hospitals are not the safest place to be when recuperating from surgery. Primary care is the way forward, with enhanced outpatient care taking place in GP surgeries and public health clinics. This would cut the need for bed numbers with patient care moved to an outpatient or a community setting.

However, the Dept of Health and HSE have repeatedly failed to explain their role. The mixed messages emanating from the Health department are doing nothing to improve public confidence in the health service. Let the new CMO of the Dept of Health come out and tell us what the plans are. We need to know that the problem of  overcrowding in our hospitals will be solved. We need to hear that primary care will get the investment needed to take the pressure off the hospitals. Stop the indecision, we need reason to be hopeful.

There’s one thing that mustn’t be forgotten in all of this and that is the patient. Think back to the last time you were in hospital. What meant the most to you? Was it the good/bad facilities or was it the friendly staff who cared for you? What really counts when one is ill, is kindness but sadly, this is rapidly disappearing as our health service is decimated by mismanagement. The Minister would do well to remember the need for a familiar smiling face.


Missing In Action

January 15, 2009

minister-for-health

Have you noticed that our Minister for Health, Mary Harney has been ominously quiet of late? What’s going on at the Department of Health? Leadership has been notably absent despite the spiralling chaos in our health service.

This is what Senator Fitzgerald, Fine Gael Senate Leader and Spokesperson on Health, has to say about Harney’s silence…

Silence from Health Minister as co-location big idea looks increasingly shaky

“In 2005 Minister Mary Harney announced her co-location big idea claiming it would deliver 1,000 extra beds ‘in the fastest and most cost-effective way in the next five years.’ Almost four years later, not a single brick has been laid and not a single bed opened.”

“Recent media reports revealed that six Beacon head office staff have been let go and senior management have agreed to pay reviews. Considering this group has won three of the tenders for co-located hospitals, it’s financial condition is pivotal to the project. Together with the lack of bank credit for developers, the whole project has to look increasingly shaky. The HSE’s own service plan for 2009 notes that projects will only be progressed to completion phase ‘subject to satisfactory banking arrangements’. The current crisis in banking does not bode well for the co-location project yet the Minister has had nothing to say on the subject.”

“Whilst co-location remains uncertain the reality for patients is that 500 existing public beds are currently closed and the Minister has rubberstamped a HSE plan to remove 600 more. The Minister is actively reducing capacity, not increasing it and the HSE are seeking a further €900 million in cutbacks for 2009. The result is her big idea is terrible news for patients meaning less isolation facilities to stop the spread of MRSA, more overcrowding in A&E, more cancelled operations and longer waiting lists.”

“The crisis in the health service continues unabated in the first two weeks of 2009 but the Minister for Health is missing in action. Many of the ongoing problems began long before the present financial crisis but while responsibility rests with this Government, leadership is absent. In December, the Minister signed off on the closure of 600 more acute beds and the slashing of €900 million from the health budget before riding off into the sunset. Instead she should be telling us how she intends to deliver long-promised reform, beginning with tackling waste and inefficiency in the back room rather than constantly hitting the front line and hurting patients.”

Well-said! Senator Fitzgerald. My thoughts exactly.

Source: Fine Gael website – Latest News 12/13 Jan ’09

UPDATE: Sara Burke, journalist and health policy analyst, may be able to solve the Mystery of the Missing Minister for us. She believes that there is currently a stand-off going on between the HSE and the Minister. You can read Sara’s excellent analysis here.

Source:  Irish Times online 29/12/08.


A Life of Struggle

October 12, 2008

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.


Whistleblower

August 29, 2008

This Sunday night, RTE will broadcast ‘Whistleblower‘ the first of a 2-part drama series based on the true events outlined in the enquiry into irregular obstetric practices at Our Lady of Lourdes Hospital, Drogheda. The Lourdes Hospital Inquiry Report by Judge Maureen Harding Clark was published two and a half years ago and highlighted the plight of 129 women whose lives were blighted forever by unnecessary caesarian-hysterectomies carried out by obstetrician, Dr. Michael Neary. The investigation described the number of peripartum hysterectomies performed at Drogheda as “truly shocking”. It’s probably the worst case of systems failure in Irish medical history. It took the tremendous bravery of a midwife to blow the whistle in 1998, to put a stop to the wrong doing.

Dr Michael Neary has never explained the failure in his duty of care to his patients nor has he ever apologised. What he did was tantamount to abuse over a period of 30 years, he ruined people’s lives. How did this happen? How could 129 women lose their wombs unnecessarily? The vast majority of these women were young, 25 of them were first-time mothers. The report praised the management of the hospital and the health board for dealing promptly and appropriately in setting up the investigation to take-on the consultant. However, opinions still vary on the reasons why Dr. Neary did what he did and nobody, except Dr. Neary, knows the real answer.

Click here to see a promotional video of the programme.

Anyone affected by the events depicted in this programme or by similar events can contact Patient Focus for support.
Website: www.patientfocus.ie
Phone: 018851611/ 17 /33/ 58.
Email: support@patientfocus.ie


Risk Equalisation

July 18, 2008

Does that affect me? The answer could be ‘”Yes”. ‘If you are old/suffering from a long-term medical condition then this week’s ruling in the Supreme Court could well end up costing you a great deal more for health insurance cover.

Risk equalisation is a scheme to ensure that community rating is implemented whereby everyone, young and old, sick or healthy, pays the same premium. It is a scheme that provides for insurance companies with fewer elderly subscribers to compensate other companies who have higher numbers of medically vulnerable subscribers. This week, the Supreme Court struck down legislation which our government had in place to ensure that risk equalisation was enforced. Up until now, this legislation placed restrictions on other insurers thereby restricting competition within the private health insurance market. The VHI is the longest serving health insurance provider and carries the largest number of elderly customers. It currently holds a monopoly with 70 percent of the health insurance market and as the state insurer, was protected up until now by risk equalisation. This week’s decision is without doubt, an embarrassment for the government and it may have serious consequences for the VHI and it’s subscribers. A more detailed explanation of the situation can be found here in this week’s online edition of The Irish Medical Times.

Competition is good but a balance has to be found whereby those most vulnerable in our society are not squeezed out of the private health insurance market. This latest development potentially represents a big upset to our Minister for Health’s plans to privatise the health service. Her future in the Department of Health, is looking more than a little bleak.