I attended the bereaved parents consultation session today for the independent review of maternity services.  Sands acted as facilitator for so many tales of incompetence, ineptitude, cruelty and senseless loss of life.

Without exception we had the same story to tell.  The variation was in the level of horror it involved and the brief spots of decent human behaviour that punctuated them.

I hadn’t appreciated how many of us would be there.  All so articulate in our grief, instant experts in a topic none of us wanted to learn.

The Vice-Chair of the Review, Sir Cyril Chantler,  was magisterial in trying to balance our impossible demands and taking the time to listen to us in groups and on an individual basis.  The facilitators had the difficult task to keeping us on topic as we veered wildly from topic to topic with all the conflicting emotions that come from telling a tale told so many times before.

The sessions confirmed what was already suspected.  So many babies had died because of basic errors, failure in care and an institutional inability to learn from mistakes and admit fault.

I’ve summarised some of the main points:

Growth monitoring and follow ups

Poor record keeping combined with lack of follow up appointments compounded by appointments being moved by reception to two weeks from the consultants original request because of lack of space. Some of those parents didn’t have those two weeks and are now haunted by the thought that if they had been seen when they were meant to be they wouldn’t be sitting in the basement of a London hotel talking about their lost children.

Myth over evidence

In the absence of available information from health professionals many of scour the Internet instead. Evidence is diligently collected, assessed for validity and representativeness so it can be presented. Evidence is ignored in favour of dangerous old myths with no basis in anything other than discredited anecdote and empty assurances.

Circle the wagons

The only response to parents asking “why?” is to close ranks, shift or deny blame and hide behind failing processes and flawed investigations.  A variant of this approach is to go on the attack and make the parent feel stupid for raising concerns or just dismissing them.

Lack of continuity of care

With an ever changing cast of thousands of varying quality, competence and bedside manner there is no sense of building a relationship or establishing what is out of the ordinary. Coupled with poor record keeping and failure to perform follow up checks it could only ever end badly.

Lack of guidance, information on pregnancy risks

For many of us the first time any of us had seen any materials on miscarriage or stillbirth was when it happened to us. Pregnancy books often skirt over the subject leaving parents bewildered and scared. It was felt that its omission was down to the well intentioned feeling that people should be protected from such knowledge. That it might frighten them.

Patronising medics

Linked to myth over evidence, there was a feeling that once pregnant, perfectly articulate mothers were treated as children when it came to their care and concerns.  A variant of this was the dismissal of concern by cheery reassurances.

This attitude follows on in post-loss care where parents are denied access to materials on the grounds of ‘it would be too upsetting for you’.

Rush, rush, rush

A general failure to follow basic steps or act in line with best practice guidelines. In the snatched minutes allocated to appointments routine tests were being ignored and follow ups not arranged.

RTFNotes

Despite the stickers (in some cases plastered on every page of the maternity notes) to notify staff of a previous loss, bereaved parents were routinely asked “is this your first?” or “I see you’ve had a baby recently.  Congratulations!”.

You’re either a liar or incompetent.  Which one is it?

There were a number of stories where rather than admit that they couldn’t find a heartbeat some staff just lied or deferred a scan until someone else could do it.

Reviews

It was not always clear whether reviews were conducted as a matter of course and whether any action was taken following the outcome.  There was a feeling that the fear of litigation was behind the reluctance for anyone to take accountability.  What mattered most to people was not money  or even blame but an apology and confirmation action would happen to make sure it didn’t happen to another baby.

High risk is meaningless

Despite some people being designated high risk they saw no significant difference in their treatment compared to low risk parents.  The only time they saw an improvement in their care was in the pregnancy following loss.

I ask you again, what is to be done?

The recent research has identified the basic points:

  • After 24 weeks, at each antenatal check-up, midwives should assess your baby’s growth. The measurements should be plotted on a graph that will show the baby’s progress. The graph shouldbe explained to you.
  • If you have risk factors for developing diabetes during pregnancy you should be offered a test to see if you have diabetes and if you do then you should be offered closer monitoring during your pregnancy.
  • If your baby’s movements change, slow down or stop, call your maternity unit straight away. From 26 weeks’ gestation, your midwife should arrange for a full antenatal check-up.

None of that seems terribly complicated but getting staff to act on it is the hardest part.  Which brings us to…

Culture change

The whole reason underpinning medicine is to delay or prevent death.  There is are those that argue that doctors need to be prepared to handle death and the way that their patients will face it.  This needs to be taught at the earliest point of medical education.

As we have seen, it’s not just the doctors that need to be able to handle death and the grief of their patients but all of the medical professionals and support and administrative staff.  Sometimes the most difficult customers to deal with are not the angry but the sad and knowing how to handle those situations sensitively and with respect.

Another thing to consider is the defensive positioning when things go wrong and the unwillingness to take responsibility for fear of litigation.  One possible suggestion mooted was the idea of a no blame insurance scheme (a quick search suggests something similar was considered in Scotland).

Information and guidance

If we are truly serious about tackling the taboos around babyloss then the books we read, the materials given by doctors and in ante-natal groups need to cover it without fear and without shame.  It is not a dirty secret and people need to know the risk factors, the warning signs and what to do if they encounter them.  Related to this is that when an expectant mother has the bravery to go into face the potential reality of reduced fetal movements she is seen without delay and taken seriously.

If there is not already one, then a template for a stillbirth plan is needed to help give bereaved parents an idea of what they will need to consider and any decisions they may have to make rather than being put on the spot at the worst moment of their lives.

R is for Hoppit
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