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/