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?