Voice of the Voiceless – Bereaved parents and the NHS Maternity Review

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

14 Comments Add yours

  1. The Anxious Dragon says:

    This is such a heartbreaking subject more so because its still happening, and parents are still being treated in a god awful way.
    When I was in labour with my first child (a very long labour) I stayed overnight in a ward with 8 other women. Some had given birth and had their babies with them, others were like me still waiting to give birth. I struck up a conversation with the lady in the bed next to me as she was waiting to give birth. I can still remember the shock when she told me she was due to be induced rhe following day to give birth to her stillborn baby. My shock was for the callous way she had been dumped in a ward with everyone without a thought for her feelings seeing all the newborns.
    This was 21 years ago, and I thought care must have improved since then, but I fear from what you say, and other things Inhave read recently this is not the case.
    ,Thank you for sharing with us, thank you for beimg brave and steong enough to tell your story to the review, I hope something solid and positive comes out of it. Tracey xx #abitofeverything

    Liked by 1 person

    1. ShoeboxofM says:

      Thank you for sharing. That’s a shocking story. Part of the problem is that quality of care is so inconsistent that in some parts what you described may well still go on.

      The Lancet call to action is a strong step towards getting it on the agenda and getting change. There’s a lot to digest but I’m working on a short summary blog on the main themes.

      The main one is anger that there last shot at this was 5 years ago and very little has changed.

      Liked by 1 person

  2. ljdove23 says:

    The stories I hear about maternity care is unbelievable, I experienced it with all five of my children at some point during my pregnancies. With Joseph, I was actually having growth scans every two weeks, I was being monitored twice a week on the CTG machine and I was also consultant led. I’d had steroids weeks earlier incase of an early delivery, and yet on the Friday before he died on the Monday, I was told that at the latest scan he weighed less than two pounds. At full term. If this was the case, if what they were telling me was true, I should NEVER have been sent home and I should have had him delivered there and then. Instead I went back on the Monday, was told that he had died, and on the Wednesday he was born weight FIVE pounds. He was also suffering with hydrocephalus, something which I was later told should have been seen on a scan. On his death certificate they wrote “Growth restriction” as cause of death, which again was not true as all of my babies have been around the five pound mark. At the time I was 26, I was grieving and confused and I never thought to question all of these things. Later, when I was pregnant again, I spoke to a consultant who actually told me that they had missed so many signs and that actually, had they noticed those things he could well have been born and lived. I will never get over that, or accept that their lack of care caused the loss of my son, and for that reason I have no faith whatsoever in maternity care, regardless of how much extra care they provide, it’s still not accurate enough clearly.
    Sorry for the long waffle! #passthesauce

    Liked by 1 person

  3. Silly Mummy says:

    Thank you for sharing. The review must have been a very difficult experience. Though I have been very lucky to have had two straightforward pregnancies, I do agree that there seem to be quite a lot of inconsistencies and gaps that you see in maternity care. & I did have quite a bad experience with treatment when I had an ectopic pregnancy prior to my children. For that reason, I actually had my first baby at a hospital in the next county over, because I didn’t want to return to my local hospital. If I have experienced concerns and frustrations despite having been lucky with outcomes, I can only imagine how it feels when the outcome has been tragedy.

    I do, however, recognise that maternity care is very understaffed, resources are stretched, and that is not the fault of the people working in hospitals. & I feel that I should also acknowledge that I was monitored and scanned weekly when there were concerns about my second baby’s size, and that also that did come about as a result of my being measured at every midwife appointment after 20 weeks, and them noting that I was very small. (And I did see while attending those extra appointments just how horrendously overstretched the maternity unit was.)

    I suppose what I’m saying is that the distress, anger and frustrations of people in your position are entirely understandable. But at the same time, I can see that for many hospitals and maternity teams, they just can’t do something with nothing. They are understaffed, under resourced, overworked, very likely underpaid. Delays, inconsistent treatment, understaffing, and people who are demoralised in their jobs and don’t project the best attitudes to their patients is what happens when governments run health services into the ground. The government, in my opinion, needs to improve the system, and improve the work conditions and environment for staff, in order to improve patient care.

    Thank you so much for linking up to #PasstheSauce, and sharing your experiences of this review.

    Liked by 1 person

    1. ShoeboxofM says:

      Thanks for your comment. I’m sorry for your loss.

      I’m not unsympathetic to the resourcing issue but there are a number of simple fixes that can make a huge difference.

      Many of the issues are around training and what HCPs learn before practicing about empathy and handling bereavement. For a job that’s primary aim is to save lives you would expect that part of that learning would cover what happens when that doesn’t work.

      The research and experiences of parents across the country shows huge inconsistency and that’s what the recent Maternity Review and HCP led patient safety measures are trying to address.

      The horror stories are not always about resourcing but personalities and a culture of fear coupled with a management unwilling to take responsibility or worse actively colluding to conceal.

      I agree that there is more the Government can do on improving some of these factors but there are cultural and behavioural issues at play in the health service that can’t be easily changed through legislation and funding. The issues are not unique to the UK.

      I take your point its not all bad and recognise the importance of appreciating the good. Through earlier posts I’ve highlighted the good work going on lead by HCPs to improve patient safety and encourage reporting and investigation of incidents and #MatExp’s commitment to listening and making changes. I’ve been humbled by the work they have been doing in encouraging people to speak about their experiences and and their willingness to listen and learn from them.

      Like

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