Look on the bright side

I’ve read two newspaper articles in the past week which have totally resonated with me. Life can be a bitch at times. I’m going through a difficult time with my health at the moment. I’ve been in hospital for weeks undergoing treatment following a complex operation on my skull.  Following the surgery I developed a complication known as osteomyelitis. In layman’s terms, this is infection of the bone and it’s a bugger to stamp out. I have also developed a fairly severe form of colitis which has complicated the treatment for the osteomyelitis. In order to stay sane, I really need to look on the bright side.

Last weekend, I read a case study in one of the Sunday mags about a woman who’d suffered a severe facial injury in a car accident.  She says “I began to see that it was an accident, that I couldn’t change it, that I had no control over it but that I could control how I would learn to live with it.”  I like her attitude. I can’t change what’s happened to me but I can control how I cope with the conseqences.

On Tuesday, the Irish Times Healthplus supplement featured an article titled “Look on the bright side”. Again, the words jumped off the page at me. “If you’re looking for what’s going to go wrong, you will always find it. If you’re looking for what works, life just gets a lot easier.”

I like this philosophy. It definitely helps to look on the bright side

About Turn

Harney has reversed her decision on the CF unit.

Full credit goes to the Cystic Fibrosis Association of Ireland (CFAI) for launching a major campaign to get the Minister for Health to honour her commitment to provide isolation rooms for CF patients. However, it is still too early to celebrate this victory as the building of the unit is dependent on a ‘build now, pay later‘ funding scheme which may yet prevent it from going ahead. It ain’t over ’til the fat lady sings!

The Minister for Health and the HSE promised to build by 2010, a new 120-bed facility with 30 en suite rooms for CF patients, at St Vincent’s hospital in Dublin. This €40 million unit will also have isolation facilities for patients with other conditions. Last month, following a reduction of 26 per cent in its capital budget, the HSE announced it didn’t have the funds to go ahead and that construction would be delayed until 2011 at the earliest. The uproar that ensued following this announcement has embarrassed Harney into making a u-turn on this decision and yesterday, she announced an alternative plan to fund this vital facility. She has proposed a scheme whereby payment will be made at the end of the construction phase. Builders will be asked to tender for the project on the basis that they would not be paid until the facility is completed, in about two years’ time. This is a different way of funding this project as it involves the construction company financing the development up to the final phase of construction.

The Government, the Minister for Health and the HSE have all failed in their duty of care to Irish people with CF. How a nation treats it’s most vulnerable citizens, is what determines it’s right to call itself civilised. Ireland has been found seriously wanting in this regard. I refuse to applaud Mary Harney for her ‘innovative’ plan to solve the CF accommodation crisis. She could have proposed this unusual funding plan years ago and saved a great deal of heartache in the process. But then it’s not about saving lives, is it? It’s all about saving face.

Cystic Fibrosis Scandal

Source: Irish Times

Patient Empowerment

The public, armed with useful non-jargon information, is rightly demanding a say in how healthcare is organised and delivered. Historically the patient has been expected to follow blindly the doctor’s advice with little input or participation in his/her treatment. The ability of patients to act as consumers and therefore participate in their own treatment has been severely hampered by medical secrecy and arrogance. The patient, on the whole, was not seen as having the training or intellect to understand complex medical issues and was therefore treated as a passenger and not a participant in their treatment. This lack of participation by the patient was caused in large part by a lack of appropriate information on which to make informed decisions.

The almost universal access to the internet has turned a bright light into what had been relatively dark corners. Patients, armed with useful non-jargon information, are becoming consumers of healthcare. They are insisting on doctors being measured, the publishing of meaningful outcome data, and access to healthcare based on their needs and not services based around what the health workers want.

Patients need to have a platform from which to make informed decisions and demand that they are participants and not passengers in their treatment. They can begin to measure around data points that are meaningful to them the quality of the treatment they receive and, most importantly, begin to shape the health service from a patient’s and not an employee perspective.

In France, (where the health system frequently ranks at the top of the World Health Organisation’s best providers) 40 per cent of health provision is supplied by the private sector. The French enjoy choice, clean hospitals and friendly staff, not to mention some of the highest quality outcomes in the world. France has embraced an agnostic system where providers are chosen and survive based on ability and quality of outcomes and not idealism.

For too long, patients have been allowed to suffer while high-level discussions take place around the politics of health.  France and others have proven that the discussion must centre around the patient and their needs. Most importantly, the patient must be at the centre of that debate and not be kept on its periphery.

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The above is the opinion of Ken Anderson, former commercial director general, Department of Health, UK. He is singing my song. The best and the most efficient health systems in other countries are based on universal provision where the money follows the patient. With further health cuts promised in the present economic downturn, we have never been more in need of new leadership and a new direction for our health service.

Source: Irish Times online.

Fighting For Life

People with cystic fibrosis are fighting a war against political negligence. After years of empty and broken promises, the Cystic Fibrosis Association of Ireland has had enough. It’s mounting a campaign, Irish War Crimes, to reverse the decision to delay the building of a new cystic fibrosis unit in Dublin. A campaign truck will travel the State over the next week and politicians will be canvassed locally and nationally to increase pressure on the Government to find funding for the unit.

At any given time there are up to 30 CF patients in St Vincent’s hospital queueing for the eight single en suite rooms.  Many CF patients are refusing to go into hospital to have lung infections treated because of the risk of cross infection. The new facility, which would have had about 30 single rooms for CF patients, had been promised for 2010 but last week it emerged that funding would not be available until 2011 at the earliest.

Seán O’Kennedy, Cystic Fibrosis Association chairman, said he made no apologies for the hard-hitting campaign. “People living with CF are fighting an ongoing war against CF but unfortunately they are also fighting a war against an Irish medical system that is totally insufficient for their needs.”

Seán added “The support from everyone, politicians on all sides of the Government, medical professionals, the general public and the media has been astounding and all are on board to wage a war against this injustice and human rights issue”.

People with CF deserve a chance at life.  They deserve proper healthcare.  They deserve to be free from the fear of cross-infection, the fear of watching their friends die. These are basic human rights.  The ultimate price of inefficiency, bureaucracy, politics, mismanagement and apathy is human lives. Twenty- five people with CF died in Ireland last year. As Orla Tinsley, leading campaigner asks, “Are human lives the new currency?”.

Source:  Irish Times online and The Cystic Association of Ireland.

The HSE recently published a HealthStat programme which aims to provide a snapshot of health services by measuring performance. In terms of CF care in Ireland, it deserves a great big fat red rating!

Red = Unsatisfactory, requiring urgent attention.

Time For Action

Here’s a follow-up to my recent post  ‘Did Not Attend‘ and the comments it generated. A new study has found there is a high rate of non-attendance by patients at hospital appointments and these ‘no-shows’ are placing a significant drain on time and resources. Now, there’s a surprise!

PATIENTS WHO do not attend their hospital appointments are a serious drain on time and resources, according to studies conducted by the medical profession.

Figures produced for two of Dublin’s biggest hospitals show that almost 25,000 did not attend appointments at St James’s Hospital last year and and the figure for St Vincent’s Hospital was almost 27,000.

A report in Britain estimates that those who do not attend (known as DNAs), cost the NHS almost €1 billion a year. No equivalent figures are available here, but the most comprehensive study carried out in the Republic to date, by Beaumont Hospital’s dermatology department, has indicated the extent of the problem.

More than one-third (36.5 per cent) of all patients did not attend their appointments in January and February last year, according to research carried out by consultant dermatologist Dr Gillian Murphy and by student doctors Hafsah Sazli and Sheena Gendeh.

An examination of other departments in the hospital indicate that the DNA rate at the dermatology department was not exceptionally high. “My students looked to see if it was disease specific and it wasn’t,” said Dr Murphy.

According to the research, 26 per cent gave not receiving their appointments as the most common reason why they did not attend. A further 22 per cent forgot their appointments, 17 per cent gave medical reasons such as a cold or diarrhoea and 12 per cent claimed they had cancelled but their names had not been taken off the list.

Other factors were wrong addresses, patient cancellations, a mistaken appointment date and work commitments. Emergencies such as a family bereavement, a broken down car or a cancelled babysitter accounted for only about 3 per cent of DNAs.

Appointments are more frequently broken by the elderly, mostly above 80 years of age, and patients with a record of previously broken appointments are more inclined to be serial absentees.

Dr Murphy said DNAs were not only a waste of hospital time, but also increased the burden on GPs whose workload was automatically doubled if they had to re-refer a patient for a hospital appointment.

Beaumont Hospital estimates that there are an average of 13-16 DNAs at the dermatology department alone on every day the clinic opens. It takes one-two hours a day to deal with the non- attendee administration.

“For all the additional work that is done in processing that information about those people, you could actually employ another secretary,” Dr Murphy said.

Luckily, modern technology offers two obvious and very cost-efficient solutions. Text messaging has been used with some success in the UK and e-mail could also be used as a back up.

Trials of a system called Managed Appointment Reminder Service (MARS) sends out a text message reminder to all patients’ nominated mobile phone at an agreed date ahead of the appointment. It has proved to be extremely successful in bringing down rates of DNAs.

Not only is it beneficial to the patient, but it also cuts down enormously on administration costs if a reply service can be updated automatically. Getting through to the relevant department can be a major problem for patients wishing to cancel.

The fundamental problem with text message, however, is that elderly people, who are more likely to miss appointments, tend not to use it.

However, Beaumont is examining if it would be possible for an elderly person to give the mobile phone number of a relative who then calls to remind that person of their appointment. Not only does it ensure that more appointments are kept, it facilitates cancellation of appointments by people who cannot keep their appointment. This in turn allows those appointments to be reallocated to others awaiting appointments.

Dr Murphy said more research needed to be done to ascertain why less than half of all patients receive their appointments in the first place, a figure which the hospital has found to be very puzzling.

However, she also said that patients must take responsibility for their own treatment and especially the nearly third of all patients who forget about their appointments or claim that they have cancelled but there is no record of such a cancellation.

“If people were more careful about their appointments, took them more seriously and were given a timely reminder closer to the date, the situation would improve.”

Source: The Irish Times Healthplus

It seems that The Biopsy Report and it’s merry band of commenters are a way ahead of the posse. We didn’t need the results of any study to know how to tackle the serious drain on hospital resources. Our health service is awash with reports that have never been acted upon. We don’t need any more reports, we need action!

Fighting MRSA

Hospital cleaners may one day use ionic liquids to clean wards. Scientists at the Queen’s University, Belfast have come up with a new way to kill off bacteria, including the hospital superbug MRSA. In this era of finite resources in our health service, any development which declares war on the superbugs, is to be welcomed.

Many types of bacteria, such as MRSA, exist in colonies that stick to the surfaces of materials. The colonies often form coatings, known as ‘biofilms’, that protect them from antiseptics, disinfectants, and antibiotics. Ionic liquids are up to 250 times better at killing ‘difficult to treat’ biofilms. Ionic liquids are essentially salts which are liquid at around room temperature. The liquid can be sprayed onto a surface where it will kill any existing bacteria. Significantly, the liquid doesn’t evaporate so once it is on a surface, no bacteria can withstand the treatment. It continues to destroy any bacteria that arrive subsequently provided the ionic liquid has not been wiped off. The liquid has low toxicity but has not yet been tested for use in human treatments.

The development was carried out by eight researchers from the Queen’s University Ionic Liquid Laboratories (QUILL) centre, supported by a grant from Invest NI. The research has been published in the journal, Green Chemistry. The Queen’s University group plans to introduce commercial products based on the technology, and is also studying possible uses with humans, eg as hand washes.

The prevalence of superbugs in Irish hospitals is thought to cost the HSE about €200 million a year. Poor cleaning, overcrowding, inadequate facilities, lack of infection control staff, poor management and a lack of accountability have all contributed to unacceptable levels of infection and death within our health system. Almost every year, we hear of a new breakthrough in the war against the superbugs. It remains to be seen if ionic liquids will become the weapon of choice.

Source:  The Irish Times and BBC News Channel (NI).

Health Access

Do you agree that all patients should be entitled to equal access to healthcare whatever their lifestyle choices? This was the motion put forward for last night’s Health Debate, the first of six debates to be held across Ireland in the 2009 Pfizer Health Debates series in association with The Irish Times. These debates on healthcare are open to the general public, free of charge, through advance registration and provide a forum for those attending to articulate perspectives and concerns. I couldn’t resist the temptation.

Last night’s debate was chaired by Irish Times columnist, Fintan O’Toole. Well-known economist, Jim Power argued against the motion along with Prof Charles Normand, professor of health policy and management at Trinity College, Dublin. They went head to head with Labour’s health spokeswoman, Jan O’Sullivan and Dr Donal O’Shea, consultant endocrinologist who spoke in favour of the motion. Before the debate commenced, the chairman asked the audience for a show of hands on the motion. Interestingly, there was fairly equal distribution of those ‘in favour’, those ‘against’ and the ‘don’t knows’.

Did you know that obesity accounts for 40% of all cancers? Add smoking to the equation and it becomes a 70% causal factor. Last night’s debate raised many philosophical as well as practical arguments. Should people who adopt risky lifestyle behaviours like smoking or abusing alcohol, be given the same access to healthcare as people who adopt healthy lifestyles? Is equity of healthcare, a fundamental right for everyone? Should people be judged by their lifestyle choices? How do we define which patients are worthy of treatment? Should our limited resources be put into educating people to change their behaviour? Who decides on these huge moral issues?

The debate was opened to questions from the floor giving the audience an opportunity for engagement before the final show of hands was taken. The motion was overwhelmingly carried in favour of equal access to healthcare for all patients regardless of lifestyle choice.

I voted against the motion and for good reason. I happen to believe that hard decisions need to be taken to stop the drain put on hospital resources through risky lifestyle behaviours. Look at the problems in A&E with the drunks and drug addicts. Are you happy that they get the same priority of treatment as the genuinely sick and the elderly? Instead of waiting to treat the problems caused by unhealthy lifestyle choices, healthcare resources could be allocated to educating people to take responsibility for their lives. I also believe that people with serious illness are being denying optimum treatment by our failure to prioritise treatment on the basis of genuine need. The poor survival rate in this country for cystic fibrosis sufferers, is the direct result of a system that refuses to make decisions. The cervical screening programme is another example of the failure to prioritise. It was rolled out last year, 21 years after the government first agreed on the need for such a programme. It’s time people woke-up to the fact that patient’s lives are being lost through lack of government leadership. Our health service is rudderless and it remains to be seen if Captain Harney and her First Mate Drumm, will stay with the sinking ship.

The next debate in the series takes place in Cork in UCC, on 29/04/09 and will discuss the hot topic of co-located hospitals. This issue has already generated much discussion nationally so it should be a lively debate.

Over My Dead Body

My daughter and I each took a deep breath yesterday evening and ventured into BODIES, the controversial exhibition which is currently showcasing in Dublin. Real human bodies are on display, all of which have been dissected to feature every organ in the body. The specimens have been preserved permanently by a process called ‘polymer preservation’ so that they will not decay. This exhibition is highly educational but it’s also raises something of an ethical dilemma.

The origins of the bodies used in this exhibition continue to create controversy, prompting an allegation, denied by the exhibitors, that some of the bodies are those of executed Chinese prisoners.The exhibitors claim that all the people whose bodies are being exhibited, died of natural causes. The ethical dilemma raised here is the fact that the exhibitors are profiting from displaying the remains of individuals who have not consented to their remains being used in this manner.

A sign on entry to the exhibition states that “the specimens  have been treated with the dignity and respect they so richly deserve.” I’ve no problem admitting that I found the exhibition far more interesting than disturbing. Having once studied anatomy and physiology using bodies donated for research, I loved having another opportunity to look inside the body and marvel at it’s sophistication. Our bodies are amazing things really when you consider how they function without us even thinking about it. My daughter has just completed a college semester in the dissecting room and she felt the exhibits helped her to put her recent learning into context. One curtained off part of the exhibition contains foetal and embryonic specimens but visitors are given the option to skip this section due to the sensitive nature of it’s display. A sign outside states that “all specimens perished in utero from complications during pregnancy.” While sad to look at, my daughter and I marvelled at  the various stages of development in utero and we were able to relate what we saw to my own experiences of pregnancy loss. This is not for everyone but it does form a useful learning experience and if nothing else, it makes you stop and think about how precious life is.

We left the exhibition feeling that we’d witnessed something very special. Some might argue that this exhibition teaches that there is nothing wrong with exploiting the dead in order to make a profit, as long as it is in the name of science or education or art. I believe that it offers a unique insight into the wonders of the human body and allows access to sights and knowledge normally reserved only for medical professionals. By understanding how the body works, you are in a better position care for your own body and keep it healthy. Having said all that, I’m happy to keep my body to myself.

Another article on the exhibition can be found here in the Irish Times.

Duchenne Explained

Muscular dystrophy is a condition in which muscles progressively get weaker and weaker.  Duchenne muscular dystrophy (DMD) is the most common and also the most severe form of muscular dystrophy. There are approx 150 boys with DMD in Ireland with diagnosis usually taking place between the ages of three and five years.

• Mostly affects boys (rarely girls).
• Often brothers or male relatives have same problem.
• First signs appear around ages 3 to 5: the child may seem awkward or clumsy, or he begins to walk ‘tiptoe’ because he cannot put his feet flat. Runs strangely. Falls often.
• Problem gets steadily worse over the next several years.
• Muscle weakness first affects feet, fronts of thighs, hips, belly, shoulders, and elbows. Later, it affects hands, face, and neck muscles.
• Most children become unable to walk by age 10.
• May develop a severe curve of the spine.
• Heart and breathing muscles also get weak. Child usually dies before age 20 from heart failure or pneumonia.

About 66 per cent of all Duchenne cases are inherited from the boys’ mother. A third of cases diagnosed are not inherited but caused by environmental factors. The disorder is caused by an error in the dystrophin gene, located on the X chromosome. This gene controls a protein, which is an essential element of muscle tissue. Without it, muscle cells break down and die.

In the UK, the life expectancy for those with DMD is between 27 and 28 thanks to new developments such as night ventilation treatments. In Ireland the life expectancy is somewhere between the late teens and early 20s. There is currently no cure for DMD.

The HEALTHplus supplement of The Irish Times recently featured an article Living in hope for our boys to highlight the problems faced by Duchenne sufferers in Ireland. No research into the condition is currently happening in this country. The best hope for children with DMD, lies in participating in UK clinical trials but this government has refused funding saying that it cannot find a way around the regulations governing it. Our government’s attitude is like a slap in the face to the parents of the 150 Irish children suffering with DMD, particularly since no such trials exist in Ireland. Not to be defeated, a group of six families have got together to set up a patient organisation called Duchenne Ireland with the aim of funding translational research into this rare disease, in an effort to drive forward effective therapies for their children. Time is not on their side.

Source:  HEALTHplus @ The Irish Times; Duchenne Ireland and Disability Information (DINF) Resources.

Cancer with a K

I was delighted to see Róisín Ingle give a mention to an inspirational new blog Mum Lives On, in The Irish Times today.

Eileen lost her Mum to cancer in March 2006 and recently decided to start a blog to keep her mother’s memory alive. Eileen’s biggest fear after her Mum died was that she would forget things about her, not just the fantastic things but the mundane as well.  Her love and admiration for her Mum shines through in her writing. As Róisín says “It could be mawkish but it’s a simply written poignant record of a cherished life”.

Eileen says “We all decided that Mum had ‘Kancer‘ rather than regular ‘cancer’. We referred to it as ‘Cancer with a K’. If Mum was going to have cancer she was going to do it in style! The funny thing about tragedy is that there is definitely a kind of celebratory aspect to it. Mum loved life, and everything about it, and to be honest in those first days she definitely loved the thought of cancer and the drama that was surrounding it.”

If you haven’t already discovered this blog, I recommend you go visit. Eileen writes with refreshing honesty about her Mum whom she says is her greatest inspiration. I can’t think of a more fitting tribute to a Mum, can you?