The Put Upons

Are you providing love, care and attention for an ageing parent? Do you get adequate support from your siblings or do you feel like a Put Upon?

Róisín Ingle is renowned for her ‘warts and all’ weekly column in The Irish Times magazine. Last weekend, she wrote about a subject which is very close to my heart. While it was sad to read, it sounded awfully familiar and left me feeling somewhat vindicated.

She told the story of one woman, Marion, who is providing the bulk of the day-to-day care for her ageing mother, with little or no help from her siblings. Marion is angry, feels taken for granted and wonders if others find themselves in a similar predicament. Read on…

Róisín Ingle on the Put Upons

“I REMEMBER YEARS ago, when Gay Byrne reigned supreme on RTÉ radio every morning instead of reigning supreme every Sunday on Lyric FM, him reading out a letter from a woman living, I think, on Ailesbury or Shrewsbury Road in Dublin, both of which streets live eternally purple in my mind on account of years spent staring at the Monopoly board.

I must have only been a teenager, but I’ve never forgotten her story.

The woman lived alone in a big house and the only time her children bothered to visit was Christmas Day. In the letter she told Gay that this year she’d prefer if they didn’t come. She couldn’t believe she had reared such an uncaring, thoughtless bunch of people. If she was alone, she reckoned, she may as well be fully alone on Christmas Day, the same as every other day. But she knew she would go through the charade, the house full of well-meaning visitors and cinnamon-scented cheer for at least part of this one day, their overburdened consciences eased for another year. She would shut the door and think about all the things she could never tell her children to their faces. So instead, as so many people did then, she told Gay.

She was an older woman then, I’m sure she’s long gone now but I thought about her the other day when I was in contact with a woman who calls herself one of the Put Upons.

That’s the term this woman, Marion, uses for the grown-up children who provides the bulk of the day-to-day love, care and attention for an ageing parent while the rest of the family do virtually nothing. Marion thought she was the only one with “selfish, uncaring” siblings until she started to talk to friends and discovered a wider community of Put Upons. But knowing she is not the only one doesn’t make it any easier.

Marion is in her 50s, working full time and angry. She thinks the main reason she is a Put Upon is because she lives the closest to her mother. In the beginning, when problems were smaller, it made sense for her to be the one taking action when any issues arose. But then her mother got older and Marion found herself in charge of making all the hospital appointments and bringing her to them and sorting out all the confusion over prescriptions. She does her mother’s shopping every week and brings bread and milk when she runs out, and sorts it when she has no batteries for the remote and organises a repair man for the telly or buys a new one if it’s really kaput. When she can’t do a particular thing, her husband and her children help out.

Oh, she knows there is a list of reasons as long as their arms why the other siblings can’t help out. They live abroad, or they are working, or they are on holidays, or they can’t afford the taxi fare to come and see her, or they have other members of extended family to care for, or they are just busy. Always busy. Too busy to agree to her requests for family meetings, or to come up with a rota so that the family can take turns making Sunday dinner. When their mother asks another sibling for help the reply is often “did you ask Marion?” She has become the de facto daughter. The default daughter. She feels like an only child and she feels taken for granted, as though her time isn’t as important as theirs.

I asked if she tells them how she feels, but she doesn’t, fearful that they won’t see her point of view and that it will cause ructions in the family. She also worries that they will tell their mother, which will make her feel like a burden – something she already suspects she is.

Marion would like her siblings to know a few things. That their mother spends far too much time alone and – look, it’s not rocket science – this means she is often lonely. One day Marion called to the house at 6pm and the lock was still on the door from the night before.

Their mother cries at night. Did they know? Their mother loves all her children and grandchildren, worries about them, talks constantly about their exploits. She longs for regular visits from them, something to look forward to. She wishes that when she rang and left them messages that they would be returned instead of ignored. Their mother is good and kind and, yes, needy but neediness, believes Marion, is not a crime in older age.

Why do Marion and the other Put Upons carry on as the default daughters or sons? “Because we love our parents. And we know we will have great memories, laughs and tender moments with them that the others lose out on.” In the end, the Put Upons win, she reckons. They have the “privilege” of supporting their older parents through their old age. They will bear no guilt when they go. And yet they also know how much richer their parents’ life would be if the others played their part.

As well as saying she’s a Put Upon, Marion also thinks she is a wimp for not wanting to rock the family boat. But she’s not a wimp. She’s a warrior for her mother. She just wishes there were others taking up arms in the name of unconditional love and battling together for the same cause.”

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I applaud Róisín Ingle for highlighting this difficult topic and for giving a voice to those who are quietly getting on with the job of looking after an ageing parent, with little help or acknowledgement from their siblings.

If this story resonates with you, I’d love to hear from you. As Marion says… we need to support one another in the name of unconditional love!

With thanks to Róisín Ingle and The Irish Times.

The fight against MRSA

I spotted this article yesterday in the Irish Times and felt compelled to share it. It’s a new step in the fight against MRSA…

New research has found that as the superbug MRSA resists antibiotics, it becomes less virulent. 

CLAIRE O’CONNELL

LIFE IS full of trade-offs, and it seems the hospital-acquired “superbug” MRSA is no exception. A new study led by Irish scientists has discovered that when the bacterium acquires resistance to antibiotics, it becomes less virulent, at least in a lab model.

The finding could help shed light on why patients who have compromised immune systems are particularly vulnerable to healthcare-associated MRSA infections.

MRSA develops when a bacterium called Staphylococcus aureus (SA) acquires resistance to a number of antibiotics and becomes methicillin-resistant Staphylococcus aureus (MRSA).

The new study, just published in the open-access journal PLoS Pathogens, looked at SA and MRSA infections associated with medical devices that are surgically implanted in a laboratory model, explains lead author Dr Jim O’Gara from UCD’s Conway Institute.

“Bacteria are naturally present on the skin, where they often don’t cause any problem. But if they stick onto medical devices that are put into the body they can get access through the skin’s barrier and then they can potentially establish an infection,” he says.

“They will form biofilms, which are communities of bacteria attached to the medical device, and those biofilms are almost indestructible. In that case you have to take the device out and put in a new one, which is not always a trivial thing for the patient.”

O’Gara and a colleague at Beaumont Hospital noticed several years ago that SA and MRSA biofilms looked different.

“Our early research in this area revealed a hugely surprising result – that MRSA and SA use different ways of forming biofilms,” says O’Gara.

Their discovery was that SA bacterial cells use sugars to stick to each other and to surfaces as biofilms, while MRSA instead use proteins to form biofilms.

With funding from the Health Research Board, his group brought the project further and looked at the effects of turning SA into MRSA in the lab. They used a preclinical model that introduced infection by allowing the bacteria to form biofilms on implanted medical devices.

Again, the results far exceeded their expectations: when SA became resistant to the antibiotic methicillin (and so became MRSA), its ability to cause illness was toned down.

“What the data show is that if you take SA and you make it resistant to methicillin, you change the way it forms biofilms, but you also make it less virulent in a preclinical model,” says Dr O’Gara, whose group at UCD worked on the project with colleagues at the University of Bath, Harvard Medical School and the University of Nebraska.

“It’s like the bacteria are making a decision to divert their energy towards becoming resistant to the drugs, and they are not going to expend energy producing as many toxins or enzymes.”

In essence, the findings suggest that hospital-acquired MRSA may have have adapted to the hospital environment by sacrificing virulence for antibiotic resistance, according to O’Gara.

“This trade-off works for the pathogen because patients in hospital, particularly in an intensive care setting, can be very immuno-compromised and the pathogen does not need to be very virulent,” he says. “On the other hand, the bacterium does need to be very antibiotic resistant, due to the necessarily high levels of antibiotic usage in intensive care units.”

O’Gara is now looking into how the discovery could be used to help make MRSA less nasty for patients who get infected. “It may open up new ways to find anti-virulence drugs,” he says.

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This article makes great sense to me as it goes some way to explain why my sinuses are chronically infected with MRSA yet I’m otherwise well. It also explains why I’ve had problems over the years with medical implants which have had to be removed having become contaminated with MRSA.

The question is… how the hell do you get rid of MRSA once and for all?

Source: Irish Times HEALTHplus magazine

Super Pillow

I’ve always had a ‘thing’ about bringing my own pillow (if possible) whenever I overnight away from home. And, that includes when I’m admitted to hospital… my non-allergenic, frequently washed pillow comes too plus a supply of my own pillowslips.

Why? There are lots of reasons why but chief amongst them is hygiene. I’ve never liked the idea of burying my head in someone else’s pillow. The crisp, white pillowslips found on hospital/hotel pillows, do not reassure me. According to an article in yesterday’s paper, my reservations are well-justified…

A recent clinical trial carried out by Bart’s Hospital and the London NHS Trust, concluded that the risk of infection from bedding is “grossly underestimated”. “Dead skin, bodily fluids and dandruff found on hospital pillows made them a potential source of more than 30 types of infection”. Read on… if you dare!

Pillow aims to halt the spread of superbugs

Carol Ryan

AN IRISH company has invented a pillow that may help to reduce the risk of picking up a hospital-acquired infection (HAI) such as MRSA from lying on contaminated bedding.

Gabriel Scientific’s “SleepAngel” pillow was the subject of a clinical trial by Barts and the London NHS Trust, which found its product to be more hygienic than regular hospital pillows.

Several international studies have found that hospital bedding can harbour bacteria if they become contaminated with the bodily fluids of a patient who has an infection.

While regular washing is a standard infection-control measure in all Irish hospitals, the Barts study concluded that the risk of infection from bedding is “grossly underestimated in clinical practice”, and that regular cleaning may not be enough.

The inventors of the SleepAngel pillow, Billy Navan and David Woolfsen, both worked in the health industry and saw the problems caused by superbugs in Irish hospitals. They thought the risk of infection from pillows was being overlooked in hospital hygiene policies and spent nine years creating their infection-control pillow.

Most of that time was spent searching for a material that could keep germs out of the interior stuffing while still allowing the pillow to “breathe”. A membrane normally used in heart stents was incorporated into a specially designed filter.

During the Barts study, their product was put to work alongside standard NHS pillows in UK hospital wards. Both were used on cardiac, vascular and respiratory wards and tested after three months.

The results showed high levels of contamination in the standard pillows. Some had bacteria levels which were described by Dr Arthur Tucker, who led the study, as a “bio-hazard”. Dead skin, bodily fluids and dandruff found on the pillows made them a potential source of more than 30 types of infection ranging from flu to leprosy. The SleepAngel pillows tested negative for interior contamination and were much less likely to have bacteria on the outside.

There was also some unpleasant news about domestic pillows – apparently you are never alone in bed because after two years of use, one-third of a pillow’s weight is made up of dust mites, dead skin and bacteria.

Infection control has become a big challenge for hospitals in recent decades. Dr Brian O’Connell, medical director at the National MRSA Reference Laboratory in St James’s Hospital, explained that the superbug problem first surfaced in Ireland during the 1980s and quickly became “endemic” in some hospitals. Rates of infection have declined in the past few years but cross-infection still creates a huge extra workload for hospital staff and puts patients at risk.

Of real concern is stopping the spread of MRSA, a strain of the common Staphlococcus aureus bacteria that has developed resistance to antibiotics, making it difficult to treat. If the bacteria gets into the system through a break in the skin it can cause infections but, in more serious cases, can lead to life-threatening diseases.

The HSE Infection Control Action Plan estimates that about 25,000 in- patients develop a HAI every year in Ireland.

The cost of treating and preventing HAIs is €23 million per year and about one-third of infections are thought to be preventable.

Source: HEALTHplus – The Irish Times

A good day?

I like it…

On Tuesday, Olivia O’Leary shared some thoughts on International Women’s Day.

Then yesterday, our new Taoiseach, Enda Kenny revealed his new Cabinet.

And, guess what?…

The Labour deputy leader, Moan Joan Burton, the party’s Finance spokesperson for the past nine years, did not get the portfolio with responsibility for public sector reform, for which she had been widely tipped. Instead, she was given Social Protection.

Also… two prominent female Labour TD’s, Roisín Shortall and Jan O’Sullivan were not promoted.

Add to that… there are fewer women in this new Cabinet than in the outgoing government.

Progress… eh?

As far as I can see, the only concession made was that a woman was appointed to the position of Attorney General…

Labour’s Máire Whelan, is the first woman to occupy the post of legal adviser to the government. Hur…ray!

Apart from all that, the good news is… this new coalition government has promised major health reform. The new Minister for Health, Dr James Reilly, is committed to developing a new universal health insurance (UHI) system which aims to end 2-tier healthcare and give everyone equal access to GP and hospital treatment based solely on medical need.

Bring it on!

Less Can Be More

I attended the sixth and final debate of the Pfizer Health Debates Series in association with the Irish Times. The series, which included six debates across Ireland in 2009, offered attendees an opportunity to hear important health issues being discussed in an open forum by leading commentators.The debates also provided an opportunity for audience engagement and open discussion.

The motion for the final debate was “This house believes that reduced health spending should not lead to poorer healthcare“. It transpired that the wording of the motion was somewhat misleading as both sides seemed to be in agreement that it isn’t about spending more money; it isn’t about cutbacks; it’s about spending more wisely. The motion was carried by a large majority.

These public debates have provided an opportunity for those attending to articulate perspectives and concerns through a question and answer session following each debate. They have been successful in raising awareness of the many wrongs in the Irish health system while also acknowledging the many good parts. At a time when the health service is facing cutbacks of over €1 billion, the positive message to take away from this debate is that money is not the sole factor in health. Better organisation will lead to better outcomes. Increased spending on healthcare does not necessarily lead to better results. Less can be more.

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!