Wednesday 27 May 2015

Strategic review of the maternity services: the importance of service user representation

On Saturday 23rd May 2015, the Irish Times printed an article which highlighted a letter sent from the Institute of Obstetricians and Gynaecologists of Ireland to the Minister for Health Leo Varadkar about the Membership of the Strategy Review Steering Group.

AIMSI Ireland through their Chair Krysia Lynch has a place on the committee representing the views of service users. Also on the committee are two service users whose babies died in Portlaoise Hospital.

In the letter, Prof Robert Harrison, said his members were "dismayed about the make-up of the group". He stated that the presence of three obstetricians and no anaesthetists or critical care specialists, compared to nine people from a midwifery background and three lay people, “does not reflect a fair balance of those who work in maternity services today”.

The letter implies that those who work in the maternity services should dominate how future maternity services are delivered and planned. It  discusses ratios of those that work in the maternity services today and assumes wrongly, as it turns out, that obstetricians should have the majority of seats. There are many more midwives working in the maternity services than obstetricians; it is logical that the majority view around the table should be from midwives. Perhaps what the statement really means to imply is that obstetricians have grown accustomed to dominating discussions surrounding maternity services, and suddenly finding themselves not in a majority is unfamiliar and unwelcome territory.

The reporting of the letter in the Irish Times implies that the querying of the service users by Prof Harrison was insensitive and inappropriate given the way these women had been treated by the members of his own profession.

Whilst the comments re service users made in the letter received a lot of publicity, little commentary was made on the demands from the Institute of Obstetricians and Gynaecologists of Ireland for the inclusion of a critical care representative and  the inclusion of an anaesthetist representative; both of which were duly appointed following the request from the Institute. 

An interesting question that the letter does not address is whether the inclusion of two service users and one advocacy organisation is sufficient. AIMSI would argue (along with the other service users representatives) that 70,000 maternity care service users might deserve even more than two service users representing them. To this end AIMSI also wrote to the Strategic Review Committee suggesting the inclusion of a further consumer representative who had perhaps experienced a different model of care and a different outcome to those already included. AIMSI were told no further representatives could be added.

On Tuesday 25th May 2015 AIMSI issued the following statement:
 

"The recent comments in the Irish Times questioning the inclusion of two service users was unhelpful. This group might not be sitting if it were not for the experience of the service users on the committee. Their bravery in coming forward  and the support they received from advocacy groups is an important aspect of improving maternity services for women in Ireland, and AIMSI would if anything be advocating for more service user inclusion on the group"

The full article can be read here
http://www.irishtimes.com/news/health/obstetricians-query-inclusion-of-mothers-in-group-1.2222952

The second article following Prof Harrison s resignation can be read here
http://www.irishtimes.com/news/health/institute-of-obstetricians-withdraws-portlaoise-letter-1.2224543

Monday 18 May 2015

SHOUT BACK - YOUR SAY: A Note on the Issue of Balance

AIMSI have received quite a few messages on our SHOUT BACK - YOUR SAY submissions; passionate pleas to include positive stories in the interest of balance.

AIMS Ireland spent 42 weeks highlighting positive, healthy birth in Ireland. (www.42weeks.ie)
42 weeks was well received, particularly by health care providers. However, during this campaign, many women contacted us who felt isolated; that their voice and experience was not represented.

SHOUT BACK - YOUR SAY represents a safe place for women to share their experiences which were not positive. These submissions are vitally important as they represent a voice which rarely has the opportunity to be heard; those who survive. AIMS Ireland passionately believe that experiences of abuse, disrespect, assault, unsafe care practice should not matter less simply because the woman and baby survive.  Yet these experiences are too often dismissed consistently by our politicians, policy makers, care providers, and media.

Baby alive. Mother alive. Non story. Regardless of the profound impact on the physical and psychological wellbeing of women, babies, families - the health and lives of all involved.

Assistance with complaints and birth trauma is the #1 reason why women make contact with AIMS Ireland. The SHOUT BACKs representing a small percentage of what comes into our inbox.

We need to be very careful that in a desire to create balance, we do not dismiss the experiences of women who have not had positive experiences. The SHOUT BACKs are difficult to read. They represent everything we hope to change in the Irish maternity system. These experiences are real and need to be heard in their own light, not buried. Its so important we do not dismiss these women's experiences by asking for the focus to change - to make us all feel more comfortable, by including positive stories.

It is in everyone's interests that these experiences are acknowledged and the courage that these women and families have shown in coming forward is respected. They are heartbreaking and very difficult reading but their place in the maternity care system is of huge importance; it is as a result of this opportunity to share, just at this particular time, that REAL change may come about.

Balance is about hearing and facing up to the difficult things. People are living with the repercussions of such treatment - often alone, isolated, while taking care of their young families - and up to now they have remained unheard and unacknowledged.

It is vital that we do not look back at this opportunity in 20 years time and say "if only we'd listened".





Friday 17 April 2015

More of this please! Positive stories set the bar

MORE OF THIS PLEASE!

AIMSI are delighted to hear that women are reporting positive experiences and hopefully this trend will continue.

We acknowledge the many individual care-givers, unit leaders, and other individuals in the Irish maternity system whom are attempting, in so far as hospital protocols allow them, to introduce more woman-centred care which realises evidence based findings and the significance optimum care has on women's physical, mental and emotional well-being; which has far-reaching impact on not only her health, but that of her family and baby.

The long term benefits of providing evidenced, supportive, women-centred care would also be seen down the line in terms of demands on the health services and other resources.

It is becoming clearer, as more research is done internationally in this area, that disrespectful and uncaring, and thoughtless treatment of a woman at such a significant time leaves lasting, very often hidden scars, unresolved physical injury, and often serious trauma which can go unrecognised and untreated. AIMS Ireland's support and advocacy services witness this on a daily basis.

It is wonderful to read this positive story in the Times, however, AIMS Ireland recognise that this level of care is not offered to all women accessing maternity services in Ireland. This should not be.

AIMSI will continue unceasingly in its efforts to ensure that every woman in the Irish maternity system has access to evidence based, kind, supportive care with a strong emphasis on informed decision making in order to support each woman to make the best decisions for her and her baby in her unique circumstances.

Very much remains to be done to realise this reality, including:

recognition of woman's rights in pregnancy
Informed decision making; consent, refusal
providing clear, unbiased information
a range of evidence based, safe care options
effective use of resources
listening to women and their experiences
humanising care for women with "high risk" status and caesarean births - such as skin to skin, baby in recovery, individual assessment, etc

Women should not have to be dependant on the attitude of individual care-givers or unit leaders for respectful and optimum care. Nor should women's care vary depending on the opinion/ routine practice of the care provider they see.

Women should be able to put trust in their maternity care and care providers.

There are very many extremely overworked and exhausted midwives and HCPs - stressed because they are unable to provide the care they know is evidence based and safe. There is much attention placed on the faults of our maternity system, to which there are many. However, AIMS Ireland fully recognises the very many wonderful care providers, who strive to bring the best practice and evidence based care to those they care for. There are pockets of amazing, supportive care in Ireland and these individuals are the backbone of these stories!

AIMS Ireland hope that maybe, someday, positive stories, such as the one here and others from 42 weeks campaign will be the norm for ALL.

Until then, all the negative experiences and feedback received from women must be carefully scrutinised and recognised as powerful tools of change. Lessons to learn from. A mirror to show us where we are - and where we must go. It is not an 'either/or' situation and we need the support of the media and Government to recognise this. ALL experiences are part of the system. ALL are worthy and should be heard. Only when we are able to be accepting and acknowledging of this - by highlighting what needs to be changed and what can be achieved - will women, babies and families get the optimum care and treatment they deserve and need.

This woman's story shows it can be done.
Here is the bar.
RISE to it!

#moreofthisplease

Irish Times: Maternity services: ‘I felt safe in the hands of the professionals’ http://www.irishtimes.com/life-and-style/health-family/parenting/maternity-services-i-felt-safe-in-the-hands-of-the-professionals-1.2168618

Wednesday 1 April 2015

Compensation costs, accountability, and listening to women.

On Monday, March 30th 2015, the Irish Times ran an article "Childbirth malpractice cost HSE €67m over five years" by CiarĂ¡n D'Arcy in which new figures were revealed from the HSE that nearly €67 million has been paid out to families in compensation for medical malpractice for birth procedures in the past 5 years.

The article states: "The increase in birth-specific payouts in 2013 reflects an overall spike that year, in which HSE hospitals spent over €50 million compensating patients and members of the public. This compares to €26 million in 2012, and €32 million last year, according to figures obtained through Freedom of Information legislation. As an organisation, the HSE has spent about €367 million in compensation payments for more than 2,000 cases over the last decade."

What is omitted from this discussion is the human voice of those touched by these cases. The experiences and lives of families affected.The people behind the HSE's compensation figures.


 

One woman provided a powerful comment following the posting of this article:


 
"If these so called 'medical professionals' did their jobs properly in the first place then there wouldn't be babies born with severe brain damage which is life changing for them and their families! If these so called midwives and doctors were held accountable for their actions and were not let free to do it again there would be less children born with brain damage. We as parents have not come in for some kind of 'windfall' as is quoted in the article and also said at a medical conference by the head of the States Claims Agency! It is NOT about money. Our children's lives have been ruined. Do these people have children? Do they know what they are going to say at their childs funeral? I do."

This woman and others, should be at the very heart of this conversation. Her experience. Her child. They are not a number on a list of pay-outs nor the words in a court brief.

Another notable absence in this discussion is recognition of a culture within our maternity services which fails to deliver accountability and best practice standards to women and babies.

Have individual clinician's practices been reviewed following these cases?
Have any clinicians been suspended or required to re-train as a result of adverse outcomes?
Are these cases open and transparent so that women can make informed decisions?
Have there been investigations into routine clinical practices which do not meet best practice standards?

The reader quoted above also posted on the AIMS Ireland page, that she,

 "would love to see a change but unless a legal duty of candour is brought in nothing will."

The reluctance of medical professionals and the State Claims Agency (in spite of their media spin) to bring in 'open disclosure' in the case of adverse events means no apologies and no clear and helpful information for those who have suffered, and continue to be profoundly affected, by these significant events.

Accountability

What is a grave concern to AIMS Ireland is the number of failures at national level identified in numerous reports which include timely access to maternity services, inadequate staffing levels for safe care, a maternity care model that hasn’t been revised in 59 years despite numerous national and international reports and recommendations, a lack of accountability and governance, and a strategic review of maternity services in which women's voices have not been included in the consultation process.

Ireland is a nation of numerous reports and recommendations. Report , after report, after report come to the same conclusions with absolutely no preventative action from the HSE or Department of Health to implement best practice standards and individualised care in Irish maternity care options. There is a fundamental failing to identify and act on local and individual clinical practice;  all necessary to ensure full accountability.


Silencing Experiences

As a nation, we have a comprehensive failure to listen to women and those at the centre of the issue. The HSE have claimed 'unverified accounts' within the most recent HIQA report. How can our Irish health services be accountable when a woman's/family's first person account is considered 'unverified' in the eyes of the HSE?

 This is a reoccurring complaint to AIMS Ireland – women do not feel their experiences, concerns, and the implications of their birth are acknowledged or listened to.

Women are told what their experiences were, rather than being asked.
Women are spoken for by politicians, health care providers, and other 'experts'.
Women are told what they are feeling.
Women's stories, choices, and concerns are silenced.

Women also referenced  'not being listened to' in the AIMS Ireland 2014 survey, "What Matters to You" in which nearly 3,ooo women took part who had birthed in Ireland over the past 5 years. This trend is highlighted in the following graph including women's comments.



#WMTY2014


Change of Culture

A change of culture is desperately needed from the top to the bottom in Irish maternity services with a focus on high quality, evidenced clinical practice and accountability for failures in clinical safety. The experiences and voices of those using the services, those living with the consequences of their birth, those at the very centre of the issue, must be consulted as equal and worthy partners in the process.  #listentowomen


Full article on compensation costs here: http://www.irishtimes.com/news/health/childbirth-malpractice-cost-hse-67m-over-five-years-1.2157876

What Matters to YOU 2014 - AIMS Ireland survey available to read here - next batch of results due out in April: http://aimsireland.ie/what-matters-to-you-survey-2015/

Sunday 29 March 2015

The Coombe, Portlaoise, The Report and Managing the Media

Portlaoise Hospital www. Midlandsradio.fm

AIMSI was doing a media interview yesterday and we were asked by the radio presenter what our opinion was of the Minister of Health's response to the issues with Portlaoise, in particular with reference to the overtaking of services in Portlaoise by The Coombe Women's and Infants University Hospital.

Three days ago (25th March 2015) the Minister for Health, Mr Leo Varadkar  appeared on the Pat Kenny show on Newstalk national radio and made the following statements re the as yet unpublished draft HIQA report on Portlaoise hospital.
"It is a draft report. It's not a draft report that I've seen yet"
"The draft report hasn't yet been put to the board of HIQA. Like any draft report, on any matter, it needs to be fact checked and that's the process that's now underway. I do expect to see it in a couple of weeks and it will be published."
"The draft report casts the net very wide, not just making findings against senior management in HSE at national level but also front line staff at local level."
"The HSE would take the view that it has to defend the reputation and good name of its staff on the frontline."
"I don't want to see government agencies suing each other. I think it's not appropriate, it's a waste of money."
"I haven't seen the report yet so I'm not going to come down on any side until I have."
Minister Varadkar on Newstalk Radio with Pat Kenny 
The next day, Thursday March 26th we hear that a memorandum of understanding has been signed between the Coombe Women's and Infants University Hospital and Portlaoise Hospital to transfer governance as part of a  "managed maternity network", The implied message is that this a direct response from the Department of Health to the HIQA  (as yet draft and unpublished) report. How could this possibly have happened in direct response to the HIQA report when the day before the Minister of Health admitted on national radio that he had not even read the report?

The logistics required to make it such a response could not possibly have been implemented in 24 hours. Rather than a direct response to the HIQA report this was a cynically  managed media response to divert attention away from the spat between HIQA and the HSE, and the abhorrent failures within Portloaise itself. In fact this response coming in the first quarter of 2015, highlights another HSE failure, as these measures were recommended to have been in place by the second quarter of 2014.

The transfer of governance to the Coombe Women's and Infants University Hospital was recommended on the 24th February by the Chief Medial Officer based on the fact that it was ALREADY agreed government policy that this would happen based on the hospital trust policy. http://health.gov.ie/wp-content/uploads/2014/03/IndHospTrusts.pdf

The process was initiated on the 28th February 2014, when staff from the Coombe were initially transferred to Portlaoise Regional Maternity Hospital
"In a statement, the HSE said a new management team has been appointed on an interim basis in order to run the service from today.
The new team consists of Michael Knowles who is currently General Manager in Naas Hospital and Angela Dunne, currently the Assistant Director of the Coombe Women and Infant University Hospital.
The National Director for Acute Hospitals, Ian Carter, said “the new governance arrangements will bring the appropriate vigour to maternity services in Portlaoise Hospital.”"
http://www.thejournal.ie/portlaoise-management-hse-1338134-Feb2014/
This new management team wa  a result of the preliminary report to the Minister for Health relating to he issues that arose following a Primetime Investigates programme relating to Portlaoise Hospital Maternity Services on 30th January 2014.

The Interim Report to the Minister for Health Dr James Reilly TD From Dr Tony Holohan Chief Medical Officer on the 24 February 2014 on "HSE Midland Regional Hospital, Portlaoise Perinatal Deaths (2006-date)"stated that
"The overall conclusions in the Report are as follows: 1. Families and patients were treated in a poor and, at times, appalling manner with limited respect, kindness, courtesy and consideration. 2. Information that should have been given to families was withheld for no justifiable reason. 3. Poor outcomes that could likely have been prevented were identified and known by the hospital but not adequately and satisfactorily acted upon. 4. The PHMS service cannot be regarded as safe and sustainable within its current governance arrangements as it lacks many of the important criteria required to deliver, on a stand-alone basis, a safe and sustainable maternity service. (See Overall Recommendation 3). 5. Many organisations, including PHMS, had partial information regarding the safety of PHMS that could have led to earlier intervention had it been brought together. 6. The external support and oversight from HSE should have been stronger and more proactive, given the issues identified in 2007. " p. 10
http://cdn.thejournal.ie/media/2014/02/portlaoise_perinatal_deaths.pdf
The recommendations of this report included the following
"Recommendation O.R.3: A team should be appointed to run the PHMS pending implementation of Recommendation O.R.4 below. Recommendation O.R.4: PHMS should become part of a Managed Clinical Network under a singular governance model with the Coombe Women & Infant University Hospital. Recommendation O.R.5: Other small maternity services should be incorporated into managed clinical networks within the relevant hospital group." p. 10 http://cdn.thejournal.ie/media/2014/02/portlaoise_perinatal_deaths.pdf
Overall recommendation 3 was expanded on:
"In this regard the HSE should immediately put in place a transition team to take control of the service at PHMS and to oversee the planning and execution of the orderly implementation of the managed clinical network recommended below. The transition team should consist of appropriate clinical and managerial expertise".  p. 69 http://cdn.thejournal.ie/media/2014/02/portlaoise_perinatal_deaths.pdf
Overall recommendation 4 was expanded on, and the report recommends implementation of this in the second quarter of 2014
 "The number of births at PHMS shows that there is and will continue to be a need to have a maternity service at Portlaoise Hospital which meets the requirement of good safety, patientcentred and sustainable care. A decision to close the service would not be appropriate given the scale of activity. Neither is it an option to maintain and develop the service under its current governance arrangements given the findings and conclusions in this report. Portlaoise Hospital is a constituent hospital of the Dublin Midlands Hospital Group. This Group also includes the Coombe Women & Infant University Hospital. The development of a managed clinical network within the Dublin Midlands Hospital Group, initially comprising the PHMS and the Coombe Women & Infant University Hospital provides a sustainable solution to the leadership, staffing, training, quality assurance, clinical standard and risk management issues identified in this report. The implementation of the Establishment of Hospital Groups34 will ensure that the future service needs of the whole population of each hospital group will be quantified and planned in a more integrated fashion. The overarching system of clinical governance and enhanced communication and cooperation between hospitals within the hospital group setting, will underpin the provision of quality and safe healthcare. The managed clinical network should consist of the following features:  A single clinical service under the governance, direction and authority of the Master of the Coombe. Capacity for medical, midwifery and other staff to be appointed to the network and to rotate as required by service and training needs between sites. Training for junior doctors and midwives to happen on both sites. Common system of clinical governance i.e. policies, audit meetings, quality assurance, incident reporting, incident management etc. with pooling of all data to ensure that all quality assurance is on the basis of one single service- albeit operating on two sites. Risk stratification of patients attending PHMS to ensure that higher risk pregnancies are dealt with at the Coombe site". p.69 http://cdn.thejournal.ie/media/2014/02/portlaoise_perinatal_deaths.pdf

Overall recommendation 5 was also expanded on and the report recommended implementation of this at the end of the second quarter of 2014
"This Report recommends the urgent transition of Portlaoise Hospital as the first smaller hospital to become part of a managed clinical network under the clinical governance of a larger hospital, in this case, the Coombe Women & Infant University Hospital. A managed clinical network with the features described above would provide a number of advantages for smaller units. It can provide clinical governance, leadership, shared clinical guidance, shared training and processes for rapid referral. In these circumstances, other small maternity services in the country should be incorporated into a managed clinical network within the relevant hospital group. Given the findings of this Report which are in part the result of small size and the challenge of sustaining services by attracting and retaining staff, it is considered reasonable that work commence on integrating smaller maternity units into systems of common governance in line with the planned hospital networks. It should not await the outcome of further analysis by HIQA which is recommended below." p. 70
http://cdn.thejournal.ie/media/2014/02/portlaoise_perinatal_deaths.pdf 
The report also made these observations
"In the preparation of this Report a number of issues of concern emerged through meetings with families and others. There were clear descriptions where patients felt backs were being turned; honest accounts were not given; and unprofessional behaviours and language were frequent. Insensitivity and a lack of empathy were common themes. Younger patients were not so much spoken to directly as through their mothers and had the feeling of being “judged” by staff. There were even accounts of senior clinical staff (more than one) inviting families to “sue”. There was also a lack of cultural sensitivity. These accounts were not just applicable to the PHMS but also to the paediatric unit." http://cdn.thejournal.ie/media/2014/02/portlaoise_perinatal_deaths.pdf 
AIMSI are used to hearing these types of descriptions from service users of the Irish Maternity Services. Most health professionals prefer to keep their ears closed and believe that such reports are grossly over exaggerated. In fact many health care professionals feel that patients airing grievances with the maternity services should not happen in the media at all. Without the media, the alarming events at Portlaoise would never have come to light. We know that internal inquiries were carried out in Portlaoise with appallingly long time lags; averaging three years from incident to report. In one case the incident took six years to reach report stage. AIMSI will continue to liaise with the HSE whenever our input is welcome and appreciated. When it is not, we will continue to highlight lapses in care and safety in the media.

Our press release in response to the HIQA report is here http://aimsireland.ie/hse-response-to-hiqa-report-on-portlaoise-hospital/

To answer the question; what is AIMSI s response to the managed maternity network between the Coombe and Portlaoise (as recommended in 2014). Our response is that this can only be a good thing. Our hope is that this will ensure adherence to the National obstetric guidelines, primarily with respect to CTG, and to the new guideline for the use of syntocinin in labour. We also hope that the ethos of The Coombe as a forward thinking hospital, looking to encourage midwifery led options for low risk women will also transfer to Portlaoise. Recent developments in the Coombe have included water births, DOMINO, early transfer home and midwife led antenatal clinics. They are also the first hospital to have initiated a doula policy in Ireland. On May 7th they will be hosting the 8th Essence of Midwifery Care Conference looking at Changes, Choices, Childbirth in which many of these changes will be highlighted. AIMSI will be speaking at the conference.Or more information on the conference see .http://www.nursingboard.ie/en/events-article.aspx?article=c19af0c9-a4f4-4361-9675-0d9552b5e5c6

Thursday 19 March 2015

Draft Clinical Guidelines for Maternity Care skirt around the issue of informed consent... Again.

Draft Clinical Guidelines for Maternity Care skirt around the issue of informed consent...Again.

 
Today's Medical Independent ran a piece by Catherine Reilly, "SCA concerned over Executive’s draft clinical oxytocin guideline" in which a survey by the State's Claims Agency expressed concern that draft Irish clinical guidelines, on the use of syntocinon (oxytocin) in maternity services, have no reference to obtaining informed consent.
 
“There is no reference to obtaining informed consent in the draft guideline under development. Clearly, this is an area that must be addressed,” it stated. “In Ireland, a “substantial number” of claims suggest oxytocin as a causative/contributory factor, it also reported."
 
Further, the article references claims by a HSE spokesperson who said "at present it is not aware of any national or international guidelines to guide practice on oxytocin augmentation in labour."
 
A claim that AIMS Ireland have previously refuted on this blog, here: "FAO: HSE - A helpful synopsis of well respected Clinical Guidelines on the use of Synthetic Oxytocin"
 
Irish National Clinical Guidelines - Informed Decision Making
 
In the past, AIMS Ireland provided recommendations to Irish draft clinical guidelines - for the VBAC guidelines and Pregnancy and Obesity guideline (2011).
 
In both instances, AIMS Ireland commented on how guidelines failed to acknowledge informed consent / informed refusal; a key principal of patient centred care. AIMS Ireland recommended that each guideline reference informed decision making, suggesting wording from NICE Clinical Guidelines as a high quality resource. In neither instance were these recommendations implemented.
 
AIMS Ireland Recommendations to draft clinical guidelines (2011):

Below is our recommendation following consultation for the Pregnancy and Obesity draft guideline, submitted in 2011, in which we clearly reference this issue.

"1. There is no reference for women’s right to informed consent and/or informed refusal or women-centred care on recommendations made within the Guideline. AIMS Ireland would like to see the inclusion of women’s rights to informed consent/refusal and an outline of women-centred care principals within each of Ireland’s Guidelines as per NICE Guideline 55, Intrapartum Care. NICE have used the following introductory forward for their Guideline which we feel is excellent: "

 
"Women and their families should always be treated with kindness, respect and dignity. The views, beliefs and values of the woman, her partner and her family in relation to her care and that of her baby should be sought and respected at all times. The woman should be fully involved in planning her birth setting so that care is flexible and tailored to meet her needs and those of her baby.

 
Women should have the opportunity to make informed decisions about their care and any treatment needed. If a woman does not have the capacity to make decisions, healthcare professionals should follow the Department of Health guidelines ‘Reference guide to consent for examination or treatment’ (2001) (available from www.dh.gov.uk).

 
Good communication between healthcare professionals and the woman and her family is essential. It should be supported by the provision of evidence-based written information tailored to the needs of the individual woman. Care and information should be appropriate to the woman, and her cultural practices should be taken into account. All information given should also be accessible to women, their partners and families, taking into account any additional needs such as physical, cognitive or sensory disabilities and inability to speak or read English."

#WMTY14 Survey - Consent

In the 2014 AIMS Ireland survey, of nearly 3,000 women whom have given birth in Ireland from 2010-2014, What Matters to YOU? 2014, the issue of informed decision making (informed consent and informed refusal) was looked at in depth.

The survey found that informed consent and informed refusal remain an issue of concern in Irish Maternity Services, with the use of Syntocinon / Oxytocin referenced in comments from women as a specific issue.

Many women expressed that while basic consent was sought, they felt they did not have a choice.  Results also showed a failure to have full benefits, risks, and potential implications for having and not having a test, treatment or procedure explained to them.

"I repeatedly impressed my wish not to have oxytocin and this was disregarded and I was treated like I was being silly. I reluctantly agreed but I felt badgered into submission rather than consenting.”

“Formally yes (consent was obtained), but I wasn’t in favour of being induced, it was never presented as an option but rather as a decision made on my behalf.”

The Full #WMTY14 survey results on Consent can be read here: http://aimsireland.ie/what-matters-to-you-survey-2015/womens-experiences-of-consent-in-the-irish-maternity-services/

In the same survey, 44.6% of first time mothers surveyed said they received Syntocinon / Oxytocin in the first stage of labour, while 20.4% of first time mothers surveyed said they received Syntocinon / Oxytocin during the second stage (pushing). *

These figures are worryingly high and suggest an inappropriate use of synthetic oxytocin outside of evidence based recommendations.

All women should be fully informed of the benefits and risks of synthetic oxytocin in order to facilitate women in informed choice.


Syntocinon/ Pitocin /Oxytocin is a synthetic version of a hormone present in labour which stimulates contractions. Synthetic Oxytocin is routinely used in Irish maternity units to synthetically start (induce) or speed up labour. It is a common component of Active Management of Labour, in which a woman's labour is managed by health care providers, using intervention and drugs, to 'speed up' process. Synthetic Oxytocin is linked to an increase of adverse effects for women. A recent study has also suggested that synthetic oxytocin is an independent risk factor for adverse effects in full term newborns.



* Syntocinon/Oxytocin is a common drug used in maternity units to either induce labour or to accelerate labour.
 * ACOG have cited Sytocinon/oxytocin is an independent risk factor to adverse effects on babies and also is shown to increase adverse effects in birthing women.
* Syntocinon is an independent risk factor for unexpected admission to NICU for fullterm infants lasting more than 24 hours and lower APGAR scores.
* Syntocinon/Oxytocin is an active agent used in Irish units to manage how long women labour.
* In hospitals with a strong Active Management of Labour ethos, half of women will have Syntocinon/Oxytocin in the first stage of labour.
* Sytocinon is routinely used in Irish units by injection to manage the birth of the placenta (3rd stage of labour). The majority of women in Ireland have a managed 3rd stage and many local units have it as policy that the 3rd stage should be managed.
* The makers of syntometrine (syntocinon) specifically state it is not safe to give to women who are breastfeeding/planning to breastfeed their babies



* Note, these figures are total figures for all first time mothers surveyed, inclusive of those using midwife led units and homebirth where syntocinon is not used.

AIMS Ireland Recommendations

It is inconceivable that a health system can stand over guidelines which fail to protect the basic rights of those using the service. Women make good decisions. Provisions must be in place to ensure that each woman is supported to make the best decision for her and her baby in her specific circumstances.

AIMSI would recommend that the issue of consent and provision of unbiased, complete information become areas of importance with Irish maternity units. “Hospital Policy” should not over-ride or give illusion of consent and individual choice for care options, admission, and opting in or out of procedures, tests and treatments. Consent policies should be revisited and printed material become available for every woman booking into maternity units.

Women should be informed of all the benefits, risks, and potential implications for themselves and their baby to have or not have procedures, tests, treatments, and interventions in order to make the best decisions in their circumstances. Women cannot truly give consent unless they understand what it is they are consenting to and are supported in these decisions by health care providers.

AIMS Ireland recommend strongly that a National clinical guideline is implemented to support the principals of informed decision making in Irish maternity services. To facilitate guidance of this, obstetric units should be under obligation to implement already existing National clinical guidelines for evidence based care rather than routine policy which relies heavily on medical management.


Full article in Medical Independent here: http://www.medicalindependent.ie/61652/sca_concerned_over_executives_draft_clinical_oxytocin_guideline

Friday 13 March 2015

Guest Blog by Jo Murphy Lawless: National Healthcare Charter for Maternity Care - "An 'opportunity to contribute' ?????

 Guest Blog post by Jo Murphy Lawless, Trinity College Dublin:
National Healthcare Charter for Maternity Care -  "An 'opportunity to contribute' ?????


  'The National Women’s Council of Ireland (NWCI) and the HSE are running workshops on gender and health this month, in Letterkenny (March 4th), Waterford (March 11th) and Mullingar (March 20th). Participants at the workshops will have an opportunity to contribute to the draft HSE National Healthcare Charter for Maternity Care. ' Irish Times, 2 March, 2015
 
Sounds useful doesn't  it?
 
The reality is this:
 
 1. We have had a so-called 'Patients Charter' in this godforsaken jurisdiction since 1992, published then by the Department of Health, and it made not a jot of difference to the long-suffering Irish public (one of the clauses in that original 1992 Charter is that everyone  is entitled to a specified individual appointment time in all outpatients  sections of all our hospitals.; so that was a great success as a policy, wasn't it? Ask women in our antenatal clinics around the conutry, let alone women in breast clinics and so on how long they wait in cattle mart conditions?
 
 2. The whole notion of 'patients  charters' was a very suspect emollient to broken health services from the late 1980s in the UK, when the first steps were taken in the NHS and elsewhere  to privatise. Its focus was  the individual  as a 'consumer' concerned only with her own needs and not with the needs of the community as a whole. They were designed to limit patient dissatisfaction to a menu of complaints and not to investigating how and why
 
 3. That 1992 Department of Health Charter here drew on what was already a politically bankrupt approach to the problems of health services.
 
 4. What women wanted for their maternity services was thoroughly  canvassed in the run up to the publication of the 1997 A Plan for Women's Health; workshops were held round  the country. to no avail. Nothing changed.  Women's voices in that kind of empty exercise decorated with the word' consultation'   were all too readily sidestepped.
 
 5. And the HSE is reviving this tattered and useless set of approaches now?
 
 And the NWCI is signing up to this paper exercise??
 
Such disheartening news for International Women's Day, given all we have endured of scandals which have cost women their lives, their babies’ lives, and families’ well-being  since Tania McCabe’s tragic death in 2007.
 
We need much tougher and realistic engagements, at the very least the setting up of a maternity services committee, integrated directly into local policymaking and chaired by women who have used our maternity  services. One such is now in place in Saolta  University Healthcare Group in the west, where policies can be interrogated by women users of the maternity services, using a solid evidence base, and then getting those policies reformed, monitoring that reform process.
 
The scope needs to be much wider.  Human rights in patients care is a far more appropriate frame of reference  - see http://www.hhrjournal.org/2013/12/10/human-rights-in-patient-care-a-theoretical-and-practical-framework/
 
 
 Jo Murphy-Lawless, TCD, 8 March 2015,

Guest Blog by Jo Murphy Lawless: National Healthcare Charter for Maternity Care - "An 'opportunity to contribute' ?????

National Healthcare Charter for Maternity Care -  "An 'opportunity to contribute' ?????

 'The National Women’s Council of Ireland (NWCI) and the HSE are running workshops on gender and health this month, in Letterkenny (March 4th), Waterford (March 11th) and Mullingar (March 20th). Participants at the workshops will have an opportunity to contribute to the draft HSE National Healthcare Charter for Maternity Care. ' Irish Times, 2 March, 2015

Sounds useful doesn't  it?

The reality is this:

 1. We have had a so-called 'Patients Charter' in this godforsaken jurisdiction since 1992, published then by the Department of Health, and it made not a jot of difference to the long-suffering Irish public (one of the clauses in that original 1992 Charter is that everyone  is entitled to a specified individual appointment time in all outpatients  sections of all our hospitals.; so that was a great success as a policy, wasn't it? Ask women in our antenatal clinics around the conutry, let alone women in breast clinics and so on how long they wait in cattle mart conditions?

 2. The whole notion of 'patients  charters' was a very suspect emollient to broken health services from the late 1980s in the UK, when the first steps were taken in the NHS and elsewhere  to privatise. Its focus was  the individual  as a 'consumer' concerned only with her own needs and not with the needs of the community as a whole. They were designed to limit patient dissatisfaction to a menu of complaints and not to investigating how and why

 3. That 1992 Department of Health Charter here drew on what was already a politically bankrupt approach to the problems of health services.

 4. What women wanted for their maternity services was thoroughly  canvassed in the run up to the publication of the 1997 A Plan for Women's Health; workshops were held round  the country. to no avail. Nothing changed.  Women's voices in that kind of empty exercise decorated with the word' consultation'   were all too readily sidestepped.

 5. And the HSE is reviving this tattered and useless set of approaches now?

 And the NWCI is signing up to this paper exercise??

Such disheartening news for International Women's Day, given all we have endured of scandals which have cost women their lives, their babies’ lives, and families’ well-being  since Tania McCabe’s tragic death in 2007.

We need much tougher and realistic engagements, at the very least the setting up of a maternity services committee, integrated directly into local policymaking and chaired by women who have used our maternity  services. One such is now in place in Saolta  University Healthcare Group in the west, where policies can be interrogated by women users of the maternity services, using a solid evidence base, and then getting those policies reformed, monitoring that reform process.

The scope needs to be much wider.  Human rights in patients care is a far more appropriate frame of reference  - see http://www.hhrjournal.org/2013/12/10/human-rights-in-patient-care-a-theoretical-and-practical-framework/


 Jo Murphy-Lawless, TCD, 8 March 2015,

Thursday 12 March 2015

PRESS STATEMENT FROM THE ASSOCIATION OF IMPROVEMENTS IN THE MATERNITY SERVICES IRELAND (AIMSI) – CHOICES IN MATERNITY SERVICES; WOMEN GIVE UNPRECEDENTED THUMBS UP TO FREE STANDING BIRTH CENTRES

PRESS STATEMENT FROM THE ASSOCIATION OF IMPROVEMENTS IN THE MATERNITY SERVICES IRELAND (AIMSI) – CHOICES IN MATERNITY SERVICES; WOMEN GIVE UNPRECEDENTED THUMBS UP TO FREE STANDING BIRTH CENTRES

MARCH 12TH 2015
For immediate release 12th March 2015

Press statement from The Association of Improvements in the Maternity Services Ireland (AIMSI)
 
Contact Krysia Lynch 087 7543751
email chair@aimsireland.ie In 2014, AMSi undertook the largest consumer based survey of the Maternity Services in Ireland and the initial set of  results on care pathways are being released this Saturday. The Survey; What Matters To You was completed by 2835 women who had used the Irish Maternity Services in the last four years. Respondents used all maternity units, as well as domiciliary care, and the majority of women (75%) were not first time mothers. The survey uncovered a broad range of issues in relation to maternity services and women’s experiences of them. A key finding was that over 90% of respondents stated that women should have the choice of freestanding birth centres. Currently there are NO free standing birth centres in Ireland and very little in terms of midwifery led care per se.
Krysia Lynch, AIMSI Co Chair says “One of the critical decisions in engaging with the maternity services for a woman is the choice of care provider. Recent maternity events in Ireland have highlighted that Ireland is unusual in comparison to other OECD countries in that women are given very limited choices in terms of care pathways and care providers. Our maternity services are overwhelmingly medicalised and obstetric led, when all the available evidence points to midwifery led care being the most suitable option for the majority of women. In midwifery led birth options women are subject to the fewest unnecessary routine interventions and therefore have the lowest risk of morbidity whilst still having excellent perinatal outcomes. Our current system does not provide women with the appropriate range of care options and as a result, all women suffer.  Implementing a full range of care options, from hospital based midwife led care options, homebirth, birth centres, in addition to hospital based obstetric care, not only ensures evidence based care is available to women, but also takes pressure off obstetric led units for women who need this type of specialised care. Choice benefits all.”
Not only are we lagging far behind in terms birth centre provision  but it would appear that any moves to address this discrepancy have been actively stonewalled by the HSE and Department of Health.Ciara Consodine of the Philomena Canning Campaign says “Given the unprecedented demand for birth centres here, combined with the fact that leading independent midwife Philomena Canning has been pursuing them for years, it begs the question as to why the HSE systematically refuses to support them. We are pursuing this with the Minister for Health and hope to bring this issue — along with the highly questionable circumstances surrounding Ms Canning’s unlawful suspension — before an Oireachtas health committee hearing in the near future.”
Further results of the What Matters to You 2014 Survey will be presented by Dr. Krysia Lynch at the AIMSI AGM on Saturday 14th March The Outhouse, Capel St, Dublin 1at 1.30pm and Philomena Canning will speak on “Outcomes of a midwife’s practice under the HSE Home Birth Scheme, October 2008 – September 2014″ at 2.30pm
More details on
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For more information on AIMSI
For more information on midwifery led care
For more information on the Philomena Canning Campaign
#isupportphilomenacanning

Wednesday 4 March 2015

AIMS Ireland AGM - March 14th - Presentation of further #WMTY2014 survey results & special guest speaker, Philomena Canning

 
Come to our AGM! 14th March, 11:30am - 4pm at Outhouse, Capel Street, Dublin 1.

Exclusive first look at next tranche of What Matters to You survey results

AND

Special guest speaker Philomena Canning SECM - "Outcomes of a midwife's practice under the HSE Home Birth Scheme, October 2008 - September 2014"
...
 
 
 
 
 

Friday 27 February 2015

AIMS Ireland Statement regarding Philomena Canning being reinstated to practice by HSE

Feb 27, 2015: AIMS Ireland Statement regarding Philomena Canning being reinstated to practice by HSE

Once again, AIMSI would like to highlight the stark inconsistencies with which the HSE will shut down an independent midwife's practice with 'no foundation' while continuing to ignore the grave concerns arising in some hospital maternity services.

While AIMS Ireland are delighted that Philomena Canning can now return to caring for women and babies, many questions remain on how the HSE were supported to illegally purse a midwife who followed protocol and appropriate practice guidelines set out by the HSE themselves in the first place.

A faction within the HSE were allowed to break precedent in removing a midwife from her practice, with no adverse outcome or foundation, while other clinicians continue to practice without suspension following adverse outcomes in maternity hospitals during the same period. This action not only undermines the national home birth service and clinical practice of Philomena Canning, but left 29 women and their babies at risk without care options.

AIMS Ireland note that the timing of this action against Philomena Canning occurred following announcements that she was setting up Ireland's first birth centre and statements of concern regarding the HSE criteria for homebirth and conditions within the MOU which undermine women's rights. It is clear to AIMS Ireland that this case was a 'warning shot' by the HSE.

The HSE need to answer the many questions arising from this injustice and the many others like it. AIMS Ireland are in full support of an independent inquiry into events contributing to the action against Philomena Canning.

AIMS Ireland expects to see the HSE act to swiftly withdraw cover from any clinician involved in future incidents with adverse outcomes in all maternity settings. We expect the HSE to apply this new high bar for all health care providers. Women giving birth in hospital deserve the same protections afforded to homebirth mothers.

Tuesday 13 January 2015

Ireland's Maternal Death Rate - Depends on who you are asking.

In Today's Irish Times, John Fitzgerald shares a piece on CSO statistics for Ireland called, ‘Vital Statistics’ sheds light on inequalities in life expectancy”. The articles states, "While the death rate also fell in the Republic, it was not till the late 1970s that it reached the UK level. Today, in spite of recent tragedies that have received significant media attention, the maternal death rate is very low, at about three per 100,000 births, marginally lower than that in Northern Ireland, England and Wales."

Once again AIMS Ireland need to highlight that CSO figures for maternal death of 3 per 100,000 are inaccurate and under-reported. More accurate figures, using a more appropriate, broader classification system on par with other EU countries, show a very different story.

 One of these stats is not like the other

The recent United Nations Population Fund (UNFPA) report put Ireland's maternal death rate at 9 per 100,000. (Irish Independent)

 
The Maternal Death Enquiry (MDE) Ireland has reported a rate of 8 per 100,000 in their recent report with specific mention to issues in the classification and collection of data, with general hospitals and the Irish coroner system both cited as areas which lead to under-reporting. As described here in the most recent MDE Ireland report (2009-2011):
 
"In Ireland, the Medical Death Notification Form completed by a medical practitioner contains
a question “If the deceased was female, was she known to have been pregnant at the time of
death, or within the previous 42 days?” (Answer “yes” or “no” in all cases)13. The Coroner’s
certificate does not contain this question.

 
In the case of Death Notification Forms, a review of MDE cases to date has shown that the
question on pregnancy status has been not being correctly completed in some cases. Review
of death certificates issued by the GRO office, following receipt of a Coroner’s certificate,dentified information on current or recent pregnancy was absent in many cases of indirect
maternal deaths. These issues clearly impact on ascertainment of reliable maternal mortality
data."
 
From MDE Ireland's 2009-2011 report regarding CSO figures:
 
"Comparative available data for the years 2009 and 2010 showed that all but one maternal
direct death was identified by the CSO. However, none of the thirteen indirect or six
coincidental maternal deaths were identified by the CSO."

Despite these noted inaccuracies, flaws and numerous reports of Ireland's true maternal death rate, it is the CSO figures which are regularly quoted by Government and Political representatives. We've all heard the 'Ireland is the safest place to have a baby' speeches, however, what most of us don't realise is that that with a maternal death rate of 8 per 100,000 we are on par with many of our EU counterparts and actually ranks worse than others. For example:

France 8 per 100,000
UK 10 per 100,000
Germany 7 per 100,000
Belgium 5 per 100,000

AIMS Ireland's position:
 
Calculations for a Nation's Maternal Death rate is an international standard for measuring safety in maternal health services, however, AIMS Ireland feel this statistic alone does not provide full insight into safety of care provided to mothers and babies. As a developed Western nation, with access to ante-natal care, nutrition, hygiene, and technology, it is more appropriate to measure safety not only in terms of death but also the 'near misses' and serious health implications to mothers and babies as a result of a pregnancy/birth (morbidity) - both physical and psychological.
 
From the Irish Times, 13/1/2015 regarding CSO figures:
 
 
UNFPA rates - Irish Independent 19/11/2014
 
 
Maternal Death Enquiry Ireland (MDE Ireland) 2009-2011 report:

Monday 12 January 2015

A Year in Review of Irish Maternity Services - 2014 AIMS Ireland (video) #MadAsHell #AIMSIreland

AIMS Ireland look back over 2014 with this short video. Thank you to everyone who marched with us, shared our information, and supported us over the year.  We would especially like to thank our members and those who made donations to AIMS Ireland – in time as volunteers and financially – AIMS Ireland could not exist without your help!

To view click here: 2014 AIMS Ireland