Your Service, Your Say?

 

Your Service, Your Say?
by Breda Kerans

I’m sure you are all too familiar with this, favoured phrase of the HSE “Your Service Your Say”. What exactly does it mean? Well firstly it does not mean that “your” service allows you to access any information on how well it delivers “your” service. You might think that is the most basic of rights, in Ireland you would be wrong.

In 2007 AIMS Ireland was formed, by women, who wanted to see the service user have some say in their maternity service. I was one of those women. We quickly realised that in order to effect change we needed some basic information. We also found that we, as service users were not entitled to this information. I can access arrogated national data, but not information on individual hospitals.

In the Spring of 2013, following a tip-off from a member of staff in one of Ireland’s maternity units of rising rates, AIMS Ireland decided to look into rates of certain procedures and request the birth statistics in each maternity unit to publish for women to use when deciding on their birth options.

What kind of information did AIMS Ireland want to find out and why?

AIMSI requested birth statistics for several key interventions which have short and long-term affects on women. We wanted to know how many labours were induced, the current C-section rate per unit, the episiotomy rate, rates for forceps delivery, and how many women were breastfeeding on discharge, and more.

AIMSI requested this information because we knew from the hospitals who do publish annual reports that the rates of various interventions do vary, sometimes quite a lot.  Women have a right to this information. They have a right to know in order to make informed decisions about their care. If for example, breastfeeding support is really important to you, you might like to know what percentages of women are breastfeeding on discharge from the hospital you are considering.

This information should be openly transparent and easy to access within the public domain. This is important for several reasons (i) women cannot make an informed decision if they do not have access to all the information (ii) ensuring full transparency of birth statistics per unit and per individual health care provider holds units and health care providers accountable for wide variations of care (iii) If this information was readily available, it would protect women from individuals or units whom do more harm than good – exposing these inconsistencies quickly. For example, following the Cuidiu publication of birth statistics, a review* was promised by the HSE to look at why first time mothers in one maternity unit had a 50% Caesarean section rate – a huge variation from other units.  Another unit showed 43% of first time mothers will have an episiotomy.

Are we to believe that first time mothers in these particular areas are more likely to require an episiotomy or Caesarean?

Or does the local practice and policy within a particular unit or with a specific health care professional increase the likelihood of a woman having these procedures.

*While the review was promised, we are still awaiting the findings

Cuidiu Birth Statistics

Irish organization, Cuidiu, painstakingly wrote to each of the country’s 22 maternity units, (19 public consultant led unit (CLU), 2 midwifery led units (MLU) and 1 private maternity unit) asking for their rates of various procedures. Some hospitals promptly replied with all of the relevant information. A few did not reply at all,  and many others gave very incomplete or partial information. As there is no official duty to supply this information, it is solely at their discretion.

 Ironically, 20 of these hospitals, along with 20 Self Employed Community  Midwives*, collect all the data required and send it annually to the ESRI, who run the National Perinatal Reporting System (NPRS). The ESRI are not allowed to make available information on individual hospitals.

The question has to be asked, why do some hospitals choose to leave some questions unanswered in their response to Cuidiu, when it is clear that they already collect this information for the NPRS?

 

 

* Self Employed Community Midwives (SECMs) are required to provide birth statistics for every woman booked, events in pregnancy, labour, birth, outcomes, morbidity, etc, including transfers, however, the same is not required for each individual consultant obstetrician.

AIMS Ireland's Requests

AIMS Ireland has recently made a Freedom of Information Request to the HSE to try obtain this information for the public.  Our request was denied. We were informed that the HSE did not hold this information centrally, and as such the information does not exist. Individual member hospitals under the control of the HSE do however hold this information. We were informed that the NPRS does hold this data, but they are not allowed to produce data on individual hospitals, in order to protect patient confidentiality.

This is a new one. Transparency = violations of patient confidentiality?

How exactly does informing the public about the number of C-sections or episiotomies performed in each maternity unit affect a patient’s confidentiality?  

 The plain unvarnished truth is that many hospitals produce annual reports, which contain this data and AIMSI commend the hospitals who publish these figures. And the others, who choose not to publish this data, are protected by the HSE.

In summary:

• 20 of our maternity units collect a lot of data
• These maternity units send this data to NPRS
• The NPRS is not allowed to tell you about the data that Your maternity unit has sent them
• Your maternity unit is not obliged to let you see this data.
• Your HSE prefers to step aside and abdicate its responsibility in ensuring You have any right to see information about Your maternity unit.

How can You have a Say in Your Service if you have no information with which to inform Your Say?

Severe Maternal Morbidity Audit report - Points to consider before we start Congratulating ourselves.

This week, an audit report of severe morbidity in the Irish maternity system, carried out by the National Perinatal Epidemiology Centre in Cork in 2011, was published. This report was eagerly anticipated by AIMS Ireland and we have been quoting the need for such an audit for some time.

The reasons for a need to audit morbidity in maternity care are outlined in the AIMSI 42 weeks campaign aricle,  "Healthy Births for Healthy Mothers and Babies"

For a long time, the quality of maternity care has been measured by the rate of deaths to mothers and babies. But, many now argue that this is not a true reflection of care as technology, nutrition, disease control, and hygiene have reduced the rate of deaths drastically. Instead, a way of measuring care is to look at the rates of complications that arise in pregnancy, and during labour, birth, and the postpartum period. These complications are called morbidity and can affect the health of mothers and babies ranging from moderate to severe harm. Some procedures and care increase the chances of these complications and, as a result, morbidity is on the rise in Ireland.

“Results have shown that maternal morbidities in Ireland are common and changing. Analysis of national trends in maternal morbidities from 2005-08 show a statistically significant increase in rates of postpartum haemorrhage (PPH), pelvic and perineal trauma, and gestational diabetes.Over an 11 year period (1999-2009), the overall PPH rate increased from 1.5% to 4.1%, with a significant increase in the rate of blood transfusion co-diagnosed with atonic PPH.....Further increasing rates of Caesarean section have led to an increase in the incidence of peripartum hysterectomy for morbidly adherent placenta. Such findings stress the need for continued surveillance of maternal morbidities to guide clinical practice, focusing on aetiological factors, preventative measures and quality of care.” Measuring maternal morbidity, Edel Manning

AIMS Ireland are concerned about rising intervention rates, which can vary greatly between hospitals and even between individual health care providers. Interventions are known to increase the chances of harm to the physical and psychological health of mothers and babies. We all want mothers and babies to come through birth feeling healthy and emotionally complete.

Severe Maternal Morbidity Report

For the purpose of this report, only severe maternal morbidities were collected. To you and me that means the NEAR MISSES.

The 20 maternity units in Ireland (19 public units and 1 private) were asked to provide data on instances of severe maternal morbidity.

What is 'severe morbidity'?

According to the report from UCC its:

" 15 categories of maternal morbidity including: major obstetric haemorrhage (MOH), eclampsia, renal/liverdysfunction, cardiac arrest, pulmonary oedema, acute respiratory dysfunction, coma, cerebrovascular accident, status epilepticus, septicaemic shock, anaesthetic complications, pulmonary embolism, peripartum hysterectomy, admission to intensive care and interventional radiology. Major obstetric haemorrhage was defined as an estimated blood loss of ≥ 2,500ml, and or a transfusion of ≥ 5 units of blood and or documented treatment for coagulopathy."


Key Findings of Severe Maternal Morbidity Report

 

"Overall, 260 women were reported as experiencing at least one severe maternal morbidity, which translated as a national morbidity rate of 3.8 cases per 1,000 maternities or 1 in 263 maternities."
 "The majority of women (57.7%) were diagnosed with one severe morbidity and one third (32.3%) were diagnosed with two severe morbidities. A small proportion was diagnosed with three or four morbidities."


"The perinatal mortality rate among women experiencing severe maternal morbidity was 32.6 deaths per 1,000 births. This was substantially higher than the national rate, which was estimated recently at 6.6 per 1,000 births." "Key findings and rates of women experiencing MOH mirrored findings from successive SCASSM reports. These include: Uterine atony was the most frequently reported cause of MOH, followed by: other specific causes; retained placenta; and placenta praevia. The majority of cases of MOH occurred in the postpartum period, with Caesarean section the most common associated mode of birth. MOH was also the most common morbidity associated with ICU admission."

With Ireland's rising Caesaeran Section rates, the rates of severe maternal morbidity look set to rise also.

And finally:

 "The incidence of severe maternal morbidity was disproportionately higher among ethnic minorities."

Does this send a red alert? It should.

AIMS Ireland has been highlighting concerns regarding care received by ethic minorities for some time. Clare Daly has put in numerous Parliamentary Questions from AIMS Ireland on the disproportionate instances of maternal mortality and morbidity among women of ethic minority backgrounds.

According to UK and Irish data, maternal deaths, while a rarity, nonetheless  statistically affect non-national emigrant women almost twice as frequently as women born in either the UK or Ireland (CMACE, 2011; MDE, 2012).  

Maternal Death Enquiry Ireland (2012) Confidential Maternal Death Enquiry in Ireland, Report for Triennium 2009-2011, Cork: MDE.
http://www.mdeireland.com/

This report adds to concerns that ethnic minority women are not receiving appropriate, safe maternity care.

Limitations of the Audit

Unfortunately, there are limitations to this audit which result in unknown and misleading results.

1) Only 19 of 20 maternity units participated in the audit, the unit which did not participate has not been named. Transparency and availability of information have been issues raised by AIMSI to the Minister for Health (twice), and HIQA. This is a 'National Audit' - every unit must participate and those who do not, should be named so that women know that their maternity unit has (i) not been included in the findings (ii) has chosen not to participate  (As an aside, AIMSI have been campaigning for the full disclosure of annual audit reports of birth statistics per unit available to the public online in order to aide informed choice. Information such as episiotomy, caesarean section rate, assisted delivery, induction rates, pph, etc should be available per unit and per individual health care professional so that women can decide which units and professionals they choose to attend for their care.)

2) AIMSI have been informed that only 6 (yes 6) of Ireland's maternity units has an electronic record system, such as the MIS system. Relying on handwritten records increases the risk of unreliability and quality of the data available to audit.

3) Some of the records from units within the audit were only partial. When looking at the audit report, we see in the 'maternal characteristics' that 2 cases did not provide maternal age and 54 cases did not provide data on ethnicity. 71 cases were missing data on smoking habits and 93 cases had no background data on alcohol habits. BMI data was missing for 1/4 of women's cases. When reports from units are based on partial recording, it is difficult to (i) have a clear understanding of the true extent of instances (ii) some of the missing data would be important to draw conclusions to risk factors contributing to rising rates of severe morbidity (iii) the integrity of the information is put into question - if data is missing or only partially recorded, can we trust the data provided is accurate?

4) Most women with severe maternal morbidity had Caesarean sections. However the report says that 1/5 of women with severe maternal morbidity had spontaneous vaginal deliveries (SVD). However, in this report, SVD is defined in terms of mode of delivery, not mode of management in labour. This is incredibly significant. It means that all vaginal births are being classified in the same way, regardless to how the labour has been managed. Evidence has shown us that some interventions used to manage labour significantly increase the risk of maternal morbidity, such as PPH. To categorize all vaginal births together, regardless of intervention, is misleading.

5) This audit, while welcomed, only measures severe maternal morbidity; the near misses, within the definitions of the classifications. A woman with a PPH of 1500ml, which is still a significant bleed, has not been included in this report. Also, everyday maternal physical and psychological instances of maternal morbidity have not been measured. AIMS Ireland has seen an increase in these types of morbidity and they have a huge impact on the physical and emotional short and long-term health of mothers and babies.

Maternal morbidity is an important aspect in measuring the quality of care within our maternity services and the care we provide to women and babies. In many instances, less severe classifications of maternal morbidity are not considered as significant as a medical means of measuring the safety of maternity care, yet, the impact on women can be lifechanging. Injury from episiotomy, for example, can lead to chronic pain, urinary and fecal incontinence, and can greatly impact on women's self esteem, ability to be active/sport, and maintain a healthy sex life. Women can also suffer from psychological morbidity - depression, PTSD, anxiety - following such interventions.

Before we start congratulating ourselves on our low rates of maternal mortality and severe maternal morbidity in Ireland, we must look at the whole picture. Recording deaths and near misses is not enough - the health of mothers and babies, in the short and long-term must be protected.



Read More:

Just one-in-263 pregnancies has severe difficulties http://www.independent.ie/lifestyle/mothers-babies/just-onein263-pregnancies-has-severe-difficulties-29369343.html

Full Report: http://www.ucc.ie/en/media/research/nationalperinatalepidemiologycentre/NPECSevereMaternalMorbidityReport2011.pdf

AIMSI and NWCI - Working Together to Improve Maternity Services

AIMSI motion voted on and passed at NWCI AGM

The National Women's Council of Ireland (NWCI) held their AGM on June 14th, 2013 - their 40th anniversary - in the Clarion Hotel (IFSC), Dublin. The diversity of members at the AGM was a stark reminder of how women from all over the country - and all over the world - have converged into this one organisation so that they have a platform from which they can stand strong together and call for changes to women's rights in Ireland. With the support of these members, AIMSI submitted a motion at the AGM that calls for changes to maternity services that will ensure women are treated with the dignity, respect and equality of health that is inherent in a woman's basic and inalienable human rights.

The motion was voted on by the NWCI members and passed, meaning that AIMSI will be given the support as well as the extensive knowledge and experience of the NWCI in seeking to improve Irish maternity services. 

The day was inspiring as it gave NWCI members a chance to vote not only on the motion submitted by AIMSI, but also on other motions put forward by fellow members. The issues ranged from a call to influence and broaden the inclusion of women in school history books to combatting domestic violence against migrant women. The calls were passionate and articulate - each one presenting a worthy and just case for support and action. In the true spirit of democracy, each motion was voted on and each one  passed. 

Here is an excerpt from the AIMSI motion:

"Ireland has the highest birth rate in the EU yet our maternity system is primarily focused on one patriarchal model of care, in which women have limited choices and a limited voice. On an administrative level this has fostered a grave lack of accountability and transparency, and a lack of equity in access to care based on geography, ethnicity and wealth.  The media rarely picks up on the extreme cases of violations to women’s autonomy and human rights in maternity services and the HSE does not investigate unless they are forced to do so. Recent years have seen maternal deaths, forced c-sections and hundreds of other cases of maternal morbidity go almost completely unnoticed. Disturbingly it would appear that these affect non Irish and disadvantaged women disproportionately. Other less extreme cases, but equally as damaging, may involve restricting or ignoring a woman’s choices in childbirth or forcing certain procedures on women in this setting without seeking informed consent/refusal. The common thread in all of these cases is that the maternity units will ultimately put the rights of the unborn child before the life and health of the mother, sometimes with fatal consequences. AIMSI believes that a woman’s human rights should not be compromised in pregnancy, labour and birth or, indeed, at any other  time in her life."

So what does this mean for AIMSI?

The NWCI encourages its members to put forward motions at the AGM that are in line with the Strategic Plan of the organisation (see here). In their guidelines on motions, the NWCI states that "this will ensure that the work of the NWCI is carried out in a focused and strategic manner; resources are used efficiently; and the best interests of the affiliates are served".

When a motion is passed by the majority of members at the meeting, it informs the policy work of the NWCI and will be acted upon within the resources of the strategic work plan. Essentially, it is an opportunity for members to put their issues forward and to gain support for their work.

This means that AIMSI will have the extensive support and invaluable resources of the NWCI to progress our mandate of improving maternity services in Ireland - with a particular focus on lobbying and campaigning for clear guidelines and legislation that uphold women's rights in maternity services. AIMSI looks forward to working with the NWCI to further our work in making improvements in Irish maternity services.

For more information on the NWCI, see http://www.nwci.ie/

HSE fail Savita Halappanavar - in Life & in Death

Today, the HSE published the long awaited report into the death of Savita Halappanavar who died of Sepsis following a miscarriage after being denied a termination in October of 2012.

You may read the full report here:
http://www.hse.ie/eng/services/news/nimtreport50278.pdf

While the nation digests the report findings, there are two issues which raise immediate red flags indicating that despite all the effort which has gone into the theatrical display of expert opinions, grave expressions, and urgent comments, the HSE hasn't learned from this process one iota.

1) Recommendations following the inquest of Savita Halapanavar included the need for 'proper and effective communication'. You might recall that the same recommendations have also been put forward following the death of Tania McCabe, Bimbo Onanuga, the Miscarriage Misdiagnosis Scandal.... (are we making our point?). Despite this, Praveen Halappanavar is reported today as being 'unaware' that the HSE report was to be published today. #IRONY?

How can we trust a health body to enforce recommendations when they can't get something so basic as effective communication with Praveen right?
http://www.irishtimes.com/news/health/savita-s-husband-not-made-aware-report-is-being-published-1.1427122

2.) The HSE report into the death of Savita Halappanavar has the inclusion and full disclosure of all pre-admission history with her GP on confirmation of pregnancy and details from Savita's booking appointment to UCHG prior to the onset of her miscarriage. The amount of intimate personal history detail included in this report is mindboggling.

We just want to make sure we get this straight, the HSE protects their staff by not naming HCPs involved in the case within the report, but they can include the dead woman's weight, her HIV status, previous medical history,  her need for GTT, blood group, medications during pregnancy, if her pregnancy was planned or not, her height, if she planned to breastfeed, her scans, etc?

We are all for transparency but something here just doesn't feel right.

It would appear violations in repsect, dignity, and patient rights linger in life and in death.

Inquest for Bimbo Onanuga resumes July 5th 2013

 Information about the Inquest for Bimbo Onanuga, 18^th April 2013; 5^th July. 2013

Bimbo Onanuga was a Nigerian woman from Lagos State who died in the Rotunda Hospital on March 4^th, 2010.

Bimbo was almost thirty weeks pregnant when she was admitted to the Rotunda Hospital with an intrauterine foetal death at the beginning of March, 2010. She was admitted to the Rotunda late on the 3^rd March for treatment to deal with the foetal death. Bimbo died the following day. 

At the time of her death, Bimbo left behind her daughter, Nellie, who had been born in Limerick Regional Hospital in 2003. Nellie was quadriplegic and Bimbo was her principal carer. Ten months after her mother’s death, Nellie herself died from complications relating to her complex condition.  

Bimbo’s partner, Abiola Adesina, who was with Bimbo that day in the Rotunda, and Bimbo’s family have pressed for an inquest about Bimbo’s death to discover and understand the unfolding train of events leading up to this tragedy. There has also been continuing concern and unease in the Nigerian emigrant community in Dublin about the circumstances of Bimbo’s death. 

Maternal deaths, while a rarity, nonetheless have been shown statistically to affect non-national emigrant women almost twice as frequently as women born in either the UK or Ireland (CMACE, 2011; MDE, 2012). 

The Dublin City Coroner has granted the family’s request for an inquest. The first session was held  on the 18^th April. The second session will resume on the 5^th July, 2013 at 11 am. sharp.

It would be wonderful if there were visible support for Bimbo and her family in the court.

The Coroner’s Court is in Store Street behind Busaras:

http://www.coronerdublincity.ie/contact.htm

 

 

References

CMACE (2011) Saving Mothers’ Lives: Reviewing maternal deaths to make motherhood safer: 2006-2008 March 2011 The Eighth Report of the Confidential Enquiries into Maternal Deaths in the United Kingdom BCOG 118 Supplement 1 March 2011.  

Maternal Death Enquiry Ireland (2012) Confidential Maternal Death Enquiry in Ireland, Report for Triennium 2009-2011, Cork: MDE.

 

COMING SOON: "42weeks" Campaign: Be a part of it! Send in YOUR positive birth stories and beautiful images

Are you getting excited?!?!

Only 16 more days until the launch of our 42 weeks campaign!!!

We need your help! AIMS Ireland are looking for positive birth stories  and your precious birth images for this campaign. Our hope is to grow a library of wonderful stories to have as a reference for women giving birth in Ireland; rather than American or UK stories.

Help us celebrate the positive aspects of births in Ireland  - please send in your birth stories and beautiful birth images!!

A positive birth story is a personal reflection of a woman's experience during birth. We seek stories from women who birthed in Ireland and felt they had a positive experience. "Positive Birth" comes in all shapes and sizes - the 'how' and the 'where' will be different for every woman and we hope to have a wide variety of stories to share.

Beautiful birth images - we are looking for photographs and videos of women birthing in Ireland. Bump shots, labour, birth, caesarean, meeting your baby, dad's first cuddle, breastfeeding, new baby, first bath - you name it!

Please send stories and images to: 42weeks@gmail.com 
All stories and images are anonymous unless specificed

Don't forget to follow us on Twitter: @42_weeks
A Facebook page for the "42weeks" campaign is Coming Soon!

BREAKING NEWS: Mini Marathon for Social Justice

 

 

BREAKING NEWS:

 

One of our amazing supporters, Sylda Langford, will be running the Flora Mini Marathon to raise money for AIMS Ireland on the 3rd of June! AIMS Ireland are in desperate need of funding - not only for the everyday running of AIMS Ireland (website, insurance) but in order to support women and improve services.

AIMS Ireland has had a request for financial support for legal justice regarding a maternal death inquiry. We need to raise €800. Be a part of social justice - all money raised by Sylda will go towards this maternal death inquiry.

 

To sponsor Sylda, please donate through the 'donate' button on the AIMS Ireland website and note that it is for the mini marathon.

** OUR PROMISE: AIMS Ireland is run solely by volunteers and funded through donations and fundraising. Volunteers cover their own costs (travel to meetings, parking, childminding, phone costs). All money donated to AIMS Ireland goes directly back to women and support

Sponsor Sylda at AIMS Ireland: http://www.aimsireland.com/homepage/?topic=home