Remembering Joshua

In a different world, today, Saturday 27th October 2018 is a happy day. It starts with an excited 10-year-old boy waking up early and opening his presents with his family. A new book from his favourite author? Maybe a football shirt? (I suspect his team would have been Aston Villa like his Granddad). No doubt we would have planned some sort of party – maybe a day trip somewhere exciting. 

When you’ve lost a child, thoughts of what might have been can pop up anytime, but important anniversaries or significant dates can make these thoughts particularly vivid and painful. Today Joshua should be celebrating his 10th Birthday. 

On 27th October 2008, our world was different. Our daughter Emily was just 3½ years old. At exactly 7.38 am, Joshua was born at Furness General Hospital. I remember staring at him in his cot, thinking how perfect he was and how lucky I was – how lucky we all were. But just 24 hours later – that world ended.

An early morning phone call broke the news. I remember the words like they were yesterday…

Joshua is having problems breathing and your wife is very upset – can you come to the hospital

Phoning my mum and hearing her voice break (mums have an instinct), getting to the hospital and seeing Joshua in the Special Care Baby Unit – initially breathing by himself but quickly put on a ventilator as I’m ushered out the room. Confusion, uncertainly, desperation, fear, hope and despair followed. 

A transfer to Manchester and a car journey from hell to follow him there. Then 7 days by his side at a specialist centre in Newcastle. 7 hopeful days; Joshua sedated but able to open his eyes and squeeze a finger. 

Joshua on ECMO in Newcastle

We thought we would get to take him home but that wasn’t to be.  Those hopes were dashed when he died at just 9 days old, in circumstances that are too awful to go over again. 

The loss of any child, in whatever circumstances is a life changing tragedy for everyone involved. Joshua’s death (and I know we are far from alone) was made incalculably worse by the cover up and denial that followed. 

Reflecting on the last 10 years could easily become a justifiably angry essay, recounting the multiple layers of defensiveness and denial we have encountered and the very mixed picture of accountability and justice that’s been achieved. But that’s not what I want to focus on today, instead I want to talk briefly about the positive impact Joshua’s life has on us and the changes I know his short life has helped to influence. 

How Joshua has changed things 

Of course, Joshua’s death has had a profound impact on every aspect of not just our lives, but of the lives of our friends and our extended family – here and around the world. We won’t ever forget him and we will always feel sadness, grief and pain that we weren’t able to keep him here – with his sisters and his family. But Joshua has also given us strength and a perspective on life that we wouldn’t otherwise have. 

His short life has influenced a huge amount of change.  The maternity unit where he was born has been transformed. The system of midwifery supervision in place at the time has been replaced. Whilst efforts were made to cover up what happened, they categorically failed. All the organisations that should and could have acted differently have now changed, in many cases following major inquires that only exposed serious problems as a direct consequence of his case.  There’s now an unprecedented focus of improving safety in maternity services and Joshua has played a part in influencing it. We now have a major national programme of investigating baby deaths likes Joshua’s, led by the world’s first independent investigations body for healthcare (HSIB). Joshua’s Story is shared as part of the training for the investigation teams. 

As well as encountering behaviours from some people that have hurt beyond measure, Joshua has also led to us meeting many truly amazing and inspiring people. These include colleagues I’m lucky to now work alongside, high profile politicians who offered friendship and unstinting support, patient safety experts from around the world and other families who have faced similar battles yet still have the capacity for kindness and compassion. 

Sometimes entirely random acts of kindness from complete strangers have meant so much – a private twitter message from someone that has read about Joshua – that’s landed at a moment when being reminded that people care has made all the difference in the world. 

Today is Saturday 27 October 2018 and nothing we can ever do can change the fact that the world we live in isn’t the one where a happy 10-year-old boy woke us up this morning excited about the day ahead. But if Joshua could somehow speak to us now, I’m sure he’d be telling us not to be sad and that instead he’d be proud about what’s been achieved in his name.

For a little boy who never got to say his first word, Joshua has had a pretty loud voice. 

We love you very much Joshua. We will never forget you xxx 

IMG_2148

 

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Each baby counts 

Last month, the Royal College of Obstetricians and Gynaecologist (RCOG) published a summary report showing the findings of their each baby counts project.

The report found that in 2015, 1136 babies met the eligibility criteria (term babies who either died or suffered severe brain damage). The work did not involve new investigations into any of these tragic cases, but rather reviewed the local investigations that had already taken place.

One of the most unacceptable findings of the work was that in 25% of these cases, the investigation that had taken place was of such poor quality that it was not possible for the review team to fully establish what happened and whether the outcome might have been preventable.

Of the remaining 727 cases,  in 76% it was judged that the outcome could have been avoided with different care.

The work identified that in 2015, there were 282 babies that died and 854 babies that suffered severe brain damage. Taking the 76% figure and extrapolating suggests that around 215 babies died and around 650 babies suffered brain damage that could have been avoided.

The aspiration of the each baby counts project is that no term baby should suffer death or disability as a consequence of events in labour. In other words, to reduce these numbers to zero.

But how much investment should an ethical healthcare system devote to achieving this aim?

Before going further, it is important to say that the impact of each and every one of these cases is beyond any economic measure. For a family, it’s hard to imagine anything more devastating than the loss of, or serious harm to a child. The repercussions of these events are felt across whole communities. No one would dispute the importance of working to reduce the number of these events, but the question of how much effort and resources we should invest in doing so is less  clear.

Purely for illustration, I thought it was worth looking at how interventions in healthcare to save or enhance lives are usually economically evaluated.

Health economists have invented the concept of a quality-adjusted life-year (QALY). The concept is fairly simple. A scale of 0-1.0 is used, 1 representing perfect health and 0 representing death. Different values are used to represent degrees of morbidity in between. For example, if you have diabetes and a foot amputation due to diabetic complications, your quality of life might be assessed as being reduced by 35%. In other words, your quality-adjusted life-year (for each year you remained alive with this condition) would be only 0.65.

This concept is used by NICE to evaluate the cost effectiveness of new treatment options as a key aspect of their approval process. As a hypothetical example, a new drug to treat a specific type of cancer might be subject to a clinical trial and shown to add an average of 2 QALYs for each person treated. If the total treatment cost was £50,000, the cost effectiveness ratio of this treatment option would be £25,000. In other words, the cost of each QALY gained for the individual patient would be £25,000.

The graph below shows the decisions NICE took from 2007 -2013 against the cost effectiveness ratio (the cost of each QALY gained). As you can see, around £30,000 seems to be used by NICE as the cut-off point for economic evaluation.

NICE
Taking the each baby counts report, it is fairly easy to come up with a ballpark approximation for the total QALY impact of the cases of harm where it was judged different care could have altered the outcome.

215 babies died. Assuming that on average, people born in 2015 could be expected to live 60 years in good health, we can approximate that if these deaths were avoided, 215 * 60 = 12,900 QALYs would have been gained.

650 babies suffered avoidable brain damage. Again, and only as a very approximate estimation, if we assume that for each child a figure of 0.5 is used for each year of their life to reflect the reduction to  quality of life due to severe brain damage, we can approximate that 650 * .5 * 60 = 19,500 QALYs would have been gained if these cases of severe brain damage were avoided.

This of course is very imprecise estimate only to illustrate a point. However, if all of the cases highlighted as being potentially avoidable in the each baby counts report had been prevented, a gain of around 32,400 QALYs (12,900 + 19,500) seems like a reasonable ballpark estimate.

Knowing that NICE generally approve interventions that cost up to £30,000 per QALY gained, this gives us a useful frame of reference to think about what would be a reasonable sum to spend on effective interventions to prevent these tragic cases (assuming that the lives of babies are treated with the same value as all human life).

32,400 QALYs * £30,000 = £972m

Currently, 25% of these cases are not even subject to adequate investigation.

Response to ‘The global implications of the current UK “normal birth” debate’ by Soo Downe

This blog is my response to this article, by Prof Soo Downe.

The blog states that there is ‘little controversy about the benefits of normal physiological birth for healthy mothers and babies’. In fact, there are controversies  around some of the claims that are promoted about the benefits of ‘normal physiological’ birth.

This paper from December 2014, titled “Is society being reshaped on a microbiological and epigenetic level by the way women give birth?” (which Soo Downe co-authored), opens with the following quote:

“Intervening in childbirth is like throwing a pebble into a pond. The ripples keep on going and you don׳t know where they will end up – but you can bet that on some distant shore there will be an effect. It is only relatively recently that we have been looking beyond the throw of the stone to the distant shore. What we see is very, very scary”

This paper goes on to describe ‘two leading theories.’

The first theory relates to the neonatal microbiome. The theory describes that during pregnancy and birth, the neonatal gut acquires flora that has been inherited ‘across generations from Neolithic times’, and that ‘…a co-dependency has built up between these organisms and the human immune system.’ The theory is that babies born by C-section miss out on a vital route of colonisation (vaginal delivery) and are therefore left ‘…vulnerable to later atopic and auto-immune disease’ as a consequence. But there is no high-quality evidence to support this theory. In fact, the latest scientific study found no ‘lasting association between caesarean delivery and a distinct microbiome community or its function in infants beyond the neonatal period’.

The second theory relates to epigenetics.  The paper states ‘…intervention in childbirth could be regarded as a potential environmental trigger with epigenetic consequences that may alter the human epigenome.’

If  there was robust scientific evidence that proved that the method by which a baby was born had a real, measurable genetic effect on babies, I would agree that women and families should be informed of the evidence so that they could take the facts into account when making decisions and choices about childbirth. However, just as in the case of microbiome literature, there is  no evidence at all that proves this theory.

This however, does not stop the authors of the paper making some pretty bold statements about what these theories mean.

“..it has been argued that, on the day of birth, a person is at a higher risk of death than for any other day until they are over 90 years old. Those who might argue for increased intervention during labour and birth in the name of safety might also pause to consider that the preservation of physiological birth as far as possible might be the passport for the lifelong health and well-being of not only an infant, but also for its future offspring. The day of birth may turn out to be one of life׳s most defining events.”

But  let’s just consider what is being proposed here. The authors are actually suggesting that the way a baby is born could be ‘…the passport for…lifelong health’ not just for the infant but for generations to come. Further, the suggestion is that people who argue for ‘increased intervention’ during labour and birth in the name of safety, might ‘pause for thought’. Really?

Firstly, the notion that anyone is arguing for ‘increased intervention’ in the name of safety is a misrepresentation. The direction of change towards safer maternity care is around improving training, risk assessment and multi-disciplinary work so that better decisions are made around when to intervene – not simply blanket ‘increasing’. Secondly though, the idea that when it comes to the safety of childbirth and preventing catastrophic, life changing consequence like death or serious harm to a child, surely no family, midwife or obstetrician should ‘pause for thought’ because of non-evidenced messages such as these?

Sadly, such messages clearly do have a real impact on women as comments in this article show.

“I was devastated when I was told I wouldn’t be able to have Diego naturally…Suddenly I felt very out of control. I was worried my baby would not get the health and emotional benefits of a natural birth…Babies born vaginally have a greater diversity of bacteria in their guts than babies born via c-section. I believe the benefits of a diverse microbiome are a better immune system, less risk of allergies, obesity and neurological diseases such as depression, anxiety and autism. I just wanted to give Diego the best start, like I did for his brothers.”

In summary, whilst no one would argue or advocate for unnecessary interventions in childbirth (or the risks associated with them), I do think that the benefits and risks are not always presented clearly and papers like this, which use language such as ‘very, very scary’ are less than helpful. After all, the Queen was born by C-section and her children, grandchildren and great grandchildren seem to be doing ok!

The RCM Campaign

The blog then explains the origins of the RCM’s ‘normal birth campaign’ describing it as a campaign ‘to enhance the capacity of midwifes to support women who wanted such a birth’. It’s worth reflecting for a moment that safe maternity care involves a multi-professional team. Nearly all women will need a midwife, some of those women will need an obstetrician and other healthcare professionals but the RCM campaign seemed  only aimed at midwives. For example, the RCM produced a document titled ‘the Top Ten Tips for Normal Birth’ which included tips for midwifes such as ‘wait and see’, ‘trust your intuition’ and ‘justify intervention’. 12 years after the campaign started, rates of intervention in childbirth have increased and there is strong evidence that an approach of pushing ‘normal’ childbirth too far has contributed to avoidable harm and death. Surely the conclusion from this is that currently, we are getting decisions about interventions wrong at both ends and we need sensible policies to address both issues, in context of a proper appreciation of benefit and risk and consequences?

An independent investigation commissioned into the maternity services at Morecambe Bay found that 11 babies and one mother died avoidably. The report identified that an “over-zealous pursuit of the natural childbirth approach” was a factor in the deaths.

The blog points out that a number other failings were also identified by the report. Whilst this is of course true, let’s be crystal clear; children at Morecambe Bay would be alive today were it not for this approach.

As for claims that the situation at Morecambe Bay was unrelated to the RCM campaign, you can read what the Chair of the Morecambe Bay Investigation, Bill Kirkup has said.

“One of those elements that crops up is the misunderstanding or misapplication of national guidance on promoting normal birth. I can’t say for sure that the RCM’s previous advice contributed to this, but some of the messages, particularly about waiting and seeing and trusting intuition, had clear echoes in what we heard at Morecambe Bay.”

I think a balanced view of the evidence would at least point towards a real possibility that the RCM campaign contributed to the approach at Morecambe Bay. Therefore a responsible response would surely be to redouble efforts to ensure this couldn’t happen in the future?

Listening to other voices 

In recent weeks, many women have been sharing their experiences. Natasha Pearlman bravely wrote the following in the Times last week about her experience of childbirth.

“…looking back I would have expected to have been talked through some options: to be given a room, offered an induction, even just some simple advice on how to turn the baby. The midwives did nothing. It seemed as if they had made the decision, without consulting me, to push me to the absolute limit to deliver the baby naturally.”

A solicitor from the legal firm Leigh Day wrote about her experiences of talking to families affected by avoidable maternity deaths.

“I am sorry to say I have met too many parents who did feel that their midwife’s ideology of achieving a ‘natural birth’ without any medical intervention, rather than their wishes or their and their babies’ safety, dictated the way their labour and delivery was managed.”

“… in a significant number of cases parents have reported to us that their midwife made them feel, or in some cases explicitly said, that a transfer to a medical ward or the need to consult a doctor would be a ‘failure’ and so avoided both until it was too late. There was a definite impact of the push for a ‘natural’ birth on patient safety in those cases.”

Responding to the claim that the issues at Morecambe Bay were a ‘one off’, the blogs states “…the cases I have seen did not occur at Morcamebe Bay and to me that suggests that this ideology has been pursued past the point of safety, not just by the odd midwife, but by at least a number of midwives across the country.”

When I read this blog, I wasn’t surprised at all because the experiences described  echoed the many conversation I’ve had with women and families who have lost children due to failures in maternity care over the years.

The blog argues that there is no evidence ‘of a rise in neonatal brain injuries in the UK’. In fact the number of claims relating to brain damaged babies increased by 23% last year. Of course, no one is suggesting that one single issue is responsible for this, but  other countries such as Sweden have achieved remarkable improvements in maternity outcomes, whilst UK has lagged behind.

Recent work by the RCOG found that in 2015, around 800 babies either died or were severely disabled where better care could have resulted in a different outcome.

The blog argues that ‘…the absence of the campaign since 2014 does not seem to have had any effect on mortality.’ This is flawed logic for several reasons. The most obvious being that the campaign for normal birth did not stop in 2014. The normal birth campaign website remained active until May this year and other documents, including the ‘top tips for normal’ birth were simply transferred to a new website. In any case, the influence of a campaign such as this is through the messages permeating midwifery training, education, conferences and events.

There are now hopeful signs that these messages will change and a new approach with an emphasis on collaborative, safe and personalised care will spread.

Progress at Morecambe Bay 

The blog is  critical of maternity services at the Morecambe Bay Trust. This is a Trust where it’s maternity services have gone from being described as ‘dysfunctional’ to now being seen as an exemplar for others to learn from. The team at Morecambe Bay have done remarkable work to turn services around and rebuild the trust of the local community. The last event considered by the Morecambe Bay investigation was in July 2013 yet the blog is critical of the Trust having relatively high intervention rates in 2014-2015, suggesting that this something the media should be reporting.

As the father of a baby that died at Morecambe Bay, I have to say that I find these criticisms quite hard to comprehend. I think it’s unwise to draw conclusions about interventions rates at any specific unit without looking much more carefully at local information. But the big picture here is that a unit where mothers and babies were needlessly dying is now much safer. Is the blog suggesting that a possible increase in intervention rates at Morecambe Bay is too higher price to pay?

Fortunately, there does now seem to be a consensus on the direction of change needed to make maternity services safer. There is universal agreement that the recommendations made by the each baby counts report are right and that collaboration and teamwork is the key to safer maternity care.

There is some really good work happening right now; Southmead, East Kent, Morecambe Bay are just some examples. As the tweet below states, let’s continue to work together for safe births, regardless of the mode of delivery.

prompt

James Titcombe – 11th September 2017

 

 

 

An email exchange with Julia Cumberlege

To: Julia Cumberlege Cc: xxxxxxxxx

Thank you Julia, I appreciate the honestly in your explanation.

Simon is clearly a gifted communicator.

Forgive me for noticing the difference in sentiment between ‘I respect and value your views and campaigning work’ and ‘…but the article! How does this man have the time to write all this stuff.’ !

All the best,
James

 

Sent from my iPhone

 

Sent from my iPhone
On 18 Aug 2017, at 13:20, Julia Cumberlege <xxxxxxxxxxxxx> wrote:
James I am very sorry. As you know I am on holiday. I wanted to get a reply to you as soon as I could and sought a helping hand. I meant every word I said in my reply to you. When I return I suggest we meet and have a coffee to talk through how we can work together to achieve our shared goals.
Best wishes
Julia
Sent from my iPhone

Begin forwarded message:
From: James Titcombe <xxxxxxxxxxxxxx>
Date: 18 August 2017 at 11:09:08 BST
To: Julia Cumberlege <xxxxxxxxxxx>
Cc: xxxxxxxx
Subject: Re: Midwives and ‘normal’ delivery methods | Comment | The Times & The Sunday Times
Dear Julia,

Can I hazard a guess that ‘Simon’ is the person who helped draft your response to my email and that you meant to forward my polite response to him, to congratulate him on a successful strategy?

It’s very sad & hurtful to see this Julia. One thing I value more than anything else in leadership is authenticity and honesty.

James

 

On 18 Aug 2017, at 10:33, James Titcombe <xxxxxxxxxx> wrote:
Hi Julia,

I think this response was intended for someone else called Simon and that you have sent me this by mistake?

I don’t know who Simon is but hope your comment ‘how does this man have time to write all this stuff’ isn’t referring to me?

If it is, happy to explain that losing a baby and wanting to ensure no one else goes through the same is quite a motivating factor.

Best Wishes,
James

 

Sent from my iPhone

On 18 Aug 2017, at 10:26, Julia Cumberlege <xxxxxxxxxx> wrote:
Simon. I think you have succeeded again, for the moment but the article! How does this man have time to write all this stuff.
Thanks again
Julia

Sent from my iPhone

On 17 Aug 2017, at 23:28, James Titcombe <JamesTitcombe@outlook.com> wrote:
Dear Julia,

Thank you for your response. I do very much respect your experience and commitment to making things better.

As you say, there is common ground.

The last few days have been interesting listening to what others have been saying & I’ve written a few more reflections here, including my hopes for the future.

https://patientsafetyfirst.wordpress.com/2017/08/17/the-campaign-for-normal-birth-and-why-change-is-welcome/amp/

If all maternity units could emulate the approach Morecambe Bay have adopted in recent years, all my hopes for system learning following Joshua’s death will have been realised.

I do really hope we can have more balanced messages around ‘normal birth’ and that you might consider helping to influence this.

Kind Regards,
James

Sent from my iPhone

On 17 Aug 2017, at 10:49, Julia Cumberlege <xxxxxxxxx> wrote:
Dear James

Thank you for your email.

I want to say how much I respect and value your views and your campaigning work, albeit that we do not agree on every point. I am not sure I will persuade you to see things differently, and you certainly know my own views.
We do, I believe, agree on familiar but crucial points that have once again been highlighted by The Times editorial and subsequent discussion.
Medical intervention that ensures the safety and well-being of a woman and her baby, in circumstances where that safety would otherwise be in jeopardy, is absolutely vital. Equally, unnecessary medical intervention is not in the interests of women and babies.
We agree on the importance of continuity of carer, specifically of midwife. Continuity is a pivotal factor in safer births. It is a real challenge given the pressures that exist in the service, but we must continue to strive for it.
We agree, I believe, on the importance of women being empowered to make choices about their pregnancy and birth. They must, of course, have access to good, impartial information and support in making their decision.
Like you, I do not want any woman to be labelled a failure because of her birth experience. I want women to have a safe and happy experience in pregnancy and childbirth, throughout to receive the best possible care and support, and to make choices that are in her – and her baby’s – best interests.
I know there will continue to be points on which we disagree, but I hope we will find a way to work together again on the many points where we do agree.
Best wishes
Julia
Baroness Cumberlege
National Maternity Review

From: James Titcombe <xxxxxxxxxxx
Sent: 15 August 2017 02:14
To: BARONESS Cumberlege
Cc: xxxxxxxxxx
Subject: Midwives and ‘normal’ delivery methods | Comment | The Times & The Sunday Times

Dear Julia,

I was saddened to see your letter in the Times in response to the leader (“Born Free”, Aug 12), which I’ve attached for ease of reference.

https://www.thetimes.co.uk/article/midwives-and-normal-delivery-methods-czgjkmk2q?shareToken=4253f934f47f3e0d5c6be90b8ccf88e7

I thought the Times column was well written, balanced and made some important points that you don’t seem to acknowledge.

You make a point about WHO stating that 80% of women should be low risk at the start of labour and cite WHO again, talking about the ‘uncritical adoption of a range of unhelpful, untimely, inappropriate and/or unnecessary interventions’ being a risk ‘run by many who try to improve maternity services.’

I struggle to understand the point you are making. No one would argue that the ‘uncritical adoption of a range of unhelpful, untimely…etc…’ interventions was a good idea.

The Times column makes 2 clear arguments. The first being that the phrase ‘normal’ can lead to some women who do need interventions feeling ‘as if they have failed’. As a man and having only experienced my own children being born without intervention, I have no direct experience of this. But I have heard literally hundreds of women express these concerns. If you look at my timeline on twitter you’ll see many examples of women saying exactly this.

I note that alongside your letter, David Bogod, a consultant obstetric anaesthetic provides further testimony to this issue.

“…it leaves women needing epidural pain relief or caesarean section feeling that they had failed in what many, rightly or wrongly, regard as their most fundamental biological role.”

You may also be aware that after extensive work listening directly to mothers, Morecambe Bay changed their language and ceased using the phrase ‘normal’ some 18 months ago. To Cathy Warwick’s credit, she was quite frank about acknowledging these issues in the interview with the Times that triggered this media interest.

Your letter makes the point that ‘changing the name of birth will not improve outcomes’, of course it won’t – but the article didn’t attempt to link language to outcomes. Nor has anyone else.

I find it odd that your letter conflates this issue when the column was so clear. Is it the case that you don’t accept the point relating to how the language makes some women say they feel? Why not speak with the head of midwifery at Morecambe Bay and ask about the work they did with mothers there?

I would be very grateful if you would be kind enough to clarify this.

The second part of the Times column however, did discuss safety.

Your letter states ‘Midwives work on the basis that “normal” births are preferable for mother and baby where it is safe.’

It is of course, up to women to decide what kind of birth is ‘preferable’ for them – and women should be given the full facts, including (as the montgomery and lanarkshire case made clear) information about the risk of vaginal delivery. But the concept of ‘safe’ isn’t a binary. It isn’t possible for the birth of a child to be labelled ‘safe’ until after the event. Before then, there is only a spectrum of risk and uncertainly.

The concern which many people have expressed relating to the emphasis of the RCM ‘normal birth’ campaign, is that it takes a very laudable and worthwhile aim; to minimise the chances of unnecessary interventions, but attempts to achieve this aim with the bluntest of instruments and through only focusing on one part of the multidisciplinary team that we know is essential to providing safe maternity care – midwives.

Messages such as ‘wait and see’ and ‘trust your intuition’ aren’t helpful if we want to foster a balanced approach that succeeds in minimising interventions without increasing the risk of catastrophic outcomes.

Isn’t a better approach not to have a national campaign that only focuses on ‘promoting’ a mode of delivery, but instead focuses on influencing all healthcare professionals involved in delivering maternity care to work collaborative together, not towards some artificial intervention target, but to ensure the care of each individual women and baby is as safe and compassionate as it can be?

It was established beyond any doubt that an over focus on ‘normal’ childbirth was a significant factor in the deaths of 11 babies and a mother at Morecambe Bay. I can tell you that I have heard from literally 100’s of families who tell me they felt a focus on normal birth contributed to their, often deeply tragic circumstances.

Your letter rightly highlights the importance of continuity (not disputed) but then finishes with the statement:

‘Midwives are the backbone of maternity services. Supporting them is crucial to safer services; undermining their confidence is damaging to the National Health Service, parents and babies.’

I really don’t see how either of the points made by the Times column could be seen to ‘undermine’ midwives confidence.

The issue about language was embraced and adopted at Morecambe Bay 18 months ago and as I understand it, the service there is going from strength to strength.

The issue about safety is particularly around moving from guidance such as ‘wait and see’ and ‘trust your intuition’ to improving training (including obstetric emergencies), teaming work, multidisciplinary working and seeking a second opinion if there is any doubt.

Far from undermining the confidence of midwives, such approaches will build confidence, aid learning and improve safety.

The real risk of damage to the National Health Service, parents and babies, would be if progress wasn’t made to improve these issues.

As someone with a key leadership role, my view is
that you should be reinforcing the need for change and supporting this direction of travel. Just as charities like Sands, organisations like Morecambe Bay and the Secretary of State for Health have.

Accusing an article making important points that many people feel very strongly about of ‘undermining midwives’ and ‘damaging the NHS’, only fuels division and makes positive change and the job of saving lives, harder.

Best Wishes,
James

 

Responding to a blog

This is a post to respond to a recent blog written by Sheena Byrom.  The blog makes four points which I felt compelled to respond to. I address each of these points below (original message in black text and my response in blue) .

1.The Royal College of Midwives discontinued the Campaign for Normal Birth (CNB) THREE YEARS AGO. I was actually part of that decision, and it was due to the fact that the College felt it was important to encompass antenatal and postnatal care within the initiative, and public health. So ‘Better Births’ was born. It had nothing to do with the Morecambe Bay Report, which was published after the decision had been made. But even though the ‘Campaign’ ceased, the support for normal birth has not. The RCM have a normal birth resources page. Some of the resources developed for the CNB have been removed following a request, and will hopefully be replaced with more up to date material. Since writing this post, Cathy Warwick CBE, CEO of the RCM, has written to confirm the College’s continued position to support midwives to promote and facilitate normal physiological birth.

Response:

Whilst the RCM introduced its Better Births campaign 3 years ago, the RCM’s normal birth campaign website was kept live until May this year. There was no announcement by the RCM about removing the website in May. Key documents however, including the RCM’s ‘top tips for normal birth’  were transferred to the new Better Births website. Only in the last few weeks was this document, along with others removed.

For me, the most interesting and ‘news worthy’ parts of the reporting in the media were the quotes from the RCM CEO Cathy Warwick. These included the statement that the normal birth campaign “had the potential to be misleading”. Cathy also called the ‘top tips for normal birth’ document “just not professional enough” adding “..they have gone; they won’t be reintroduced in any way and we’ll have much more professional, evidence based guidelines for midwives.”

Cathy also acknowledged that the language of ‘normal birth’ could make some women feel like failures saying: “It does seem that this word ‘normal’ is particularly contentious . . . it is simpler to use a non-value-laden word. Because of the inferences that are drawn there will be instances where you’re explaining your position better by using terms like ‘physiological birth”.

As far as I have seen, most people have welcomed the news as reported and the comments from Cathy as being sensible and helpful.

When I tweeted the headline in the Times newspaper on Saturday 11th, comments from most were welcoming and positive. At Morecambe Bay for example, the response was ‘great news’ and confirmation that through listening to mothers, they had made changes in their language and approach some time ago.

Sascha

2. THERE IS NO EVIDENCE that the RCM’s Campaign for Normal Birth had any direct influence on the tragedies that occurred at Morecambe Bay, or any other service. The adverse events at Morecambe Bay were attributed to five elements of dysfunctionality, one of which was the ‘over-pursuit of normal birth’. The report does not apportion blame to any one of the five individual elements, but to the whole five. In any case – why is the one element linked to resources supplied by the RCM?

Response:

I take strong issue with this.

An independent investigation was commissioned into the maternity services at Morecambe Bay which reported in March 2015. This found that 11 babies and one mother died avoidably at FGH. The report identified (amongst a number of other serious issues) that “care in the unit became strongly influenced by a small number of dominant individuals whose over-zealous pursuit of the natural childbirth approach led at times to inappropriate and unsafe care”. The report also quoted one midwife as saying “…there were a couple of senior people who believed that in all sincerity they were processing the agenda as dictated at the time… to uphold normality.”

It isn’t ever going to be possible to make a direct link to a campaign and individual cases of harm, but I have always believed that the RCM campaign has been an influencing factor in some of the clinical problems that developed at FGH. I have written about this long before the Kirkup report was published.

Today however, the Chair of the Morecambe Bay Investigation himself has intervened and published a letter in the HSJ which specifically addresses this point:

“One of those elements that crops up is the misunderstanding or misapplication of national guidance on promoting normal birth. I can’t say for sure that the RCM’s previous advice contributed to this, but some of the messages, particularly about waiting and seeing and trusting intuition, had clear echoes in what we heard at Morecambe Bay. The change in position [from the RCM] is welcome, and should not be undermined by optimistic and unlikely denial that such problems exist. We should continue to be explicit about the need for effective team work, explanation of risk, and looking and learning when something goes wrong.”

I would argue that as Bill Kirkup himself has highlighted the very messages in the RCM campaign “had clear echoes in what we heard”, it would be extremely unlikely that the RCM campaign was not an influencing factor.

The blog also states there is no evidence of this issue impacting on care in “any other service”. Actually there is evidence that that parents who have lost children and professionals dealing with claims relating to brain damaged babies feel that this exact issue is a real and significant contributory factor.

For example, please read this blog from Leigh day solicitors or this report and the comments from families whose babies died following failure in care at SaTH.

In the last week, I’ve been amazed at how many families have shared their stories. If you doubt me, read the responses to this tweet – Yes, of course this is anecdotal – but is it right to just dismiss the experience of all these women and families?
 
A final relevant link is here. This was shared with me today by a mother who lost her baby son in the Netherlands. Please read it. It highlight very similar issues in a country whose equivalent of the RCM (the KNOV) have implemented a very similar normal birth campaign.

3. I believe in choice, autonomy, and safety. Out of our 9 grandchildren, none have been born ‘normally’. They needed expert medical intervention, medical support, and I am eternally grateful for the attention they received. I also understand the evidence that physiological normal birth is the optimal way to give birth for most women, and that most women want it.

To make informed choices women need to have accurate information, including honest information about risk not misrepresentations as described here. Information must also be unbiased and not leading, as discussed here. Top down messages aimed at only one profession vital to ensuring safe maternity care, such as ‘wait and see’ and ‘trust your intuition’, surely don’t help ensure women and babies receive timely lifesaving interventions when needed.  I have never argued against the very valid and important objective of aiming to reduce unnecessary interventions (great work happening in places like East Kent for example)- I have argued that this objective must be implemented in a way that doesn’t increase the risk of catastrophic outcomes for some. 

I wrote this blog in 2014 which describes a number of reports into the causes of adverse neonatal outcomes (death and serious injury). The themes are clear.

No one disputes that ‘physiological’ birth will be the optimal way to give birth for most women. The issue here is that it is never possible to know for certain if a safe, physiological is possible until after the birth. Before then, there is only a spectrum of risk. The World Health Organisation (WHO) estimates that in 12-15% pregnancies, women suffer life-threatening obstetric complications. My argument is that the RCM’s normal birth campaign and documents like the ‘top tips for normal birth’, should be replaced with more balanced messages involving all professionals needed to deliver safe maternity care.

4. I hear and fully respect that some women feel that the word ‘normal’ in relation to birth is divisive, and upsetting, leaving them feeling like they ‘failed’. I can understand this, that women may feel disappointed if they wanted a particular birth experience, worked towards that goal, then it didn’t happen. But that’s it. I would like to suggest that it is the end result is the disappointment, more than the word. Would women feel less disappointed if birth was called physiological? I liken this debate to infant feeding. If a woman has problems and ceases to breastfeed her baby, she feels disappointed – no matter what the term is. Normal birth is a normal physiological bodily process – as is normal respiration, and digestion. The terms physiological, natural and any other are fine too, but let’s not blame a word for disappointment. We need to listen to the experiences of women when they are unhappy with their birth experience for whatever reason, then aim to change services so that optimal childbirth is the goal, for a healthy mother and baby. I will not stop using the term ‘normal birth’ and I will support midwives to facilitate women’s choices safely.

Response:

I would respectful disagree that the reason some women feel like they have ‘failed’ is simply because they are disappointed by the ‘end result’. As a man, I’m not in a position to know how women feel, but I have read dozens of comments from professionals and women in recent days and I have listened to what they say. Themes include what woman are told in anti-natal classes through to actually been told they have failed because they needed pain relief or intervention.

more1rNatalie

A respected consultant obstetric anaesthetist, Doctor Bogod wrote the following letter in the Times last week:

Bogod

This letter was dismissed as “rubbish” on twitter by one senior NHSE employee, but is this really an entirely made up issue? In a compassionate, kind and caring NHS,  shouldn’t the experiences of woman and other healthcare professionals be listened to? If women and healthcare professionals are asking for different language and saying that they feel ideology is getting  in the way of unbiased information, being truly empowered to make their own choices,  and the safety of their care, shouldn’t those working in maternity services be open to listening?

22rimage1

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James Titcombe – 21/8/2017

 

 

The Campaign for ‘Normal Birth’ and why change is welcome

Fake news?

Over the last week there has been lots of news relating to safety and maternity services. This was initially triggered by media stories relating to the Royal College of Midwives (RCM) signalling a shift away from using the term ‘normal birth’ and confirming that their normal birth campaign website was quietly taken down a few months ago. The RCM also confirmed that their much criticised ‘top tips for normal birth’ document was very recently removed from their current website and that neither this guidance or the normal birth campaign will be re launched.

This news was reported in the New Scientist, the Times and the HSJ last week.

The media reports quoted the RCM chief executive, Cathy Warwick stating that the normal birth campaign “had the potential to be misleading” and referring to the ‘top tips for normal birth’  document as “just not professional enough” adding “..they have gone; they won’t be reintroduced in any way and we’ll have much more professional, evidence based guidelines for midwives.”

Cathy also, for the first time I think, acknowledged that the language of ‘normal birth’ could make some women feel like failures saying: “It does seem that this word ‘normal’ is particularly contentious . . . it is simpler to use a non-value-laden word. Because of the inferences that are drawn there will be instances where you’re explaining your position better by using terms like ‘physiological birth”.

I’ve written about the RCM’s response to the Morecambe Bay Investigation which tragically made a clear link between the ‘..national agenda as dictated at the time…to uphold normality’ and the deaths of 11 babies and a mother here  and more recently here. So in this context, when I read the comments from Cathy it felt like a very welcome and positive shift in emphasis.

The reaction to these media reports has been overwhelmingly positive, but there has been a strong backlash from some with accusations that the media reports were ‘fake news’ because of the fact that the RCM replaced it’s ‘normal birth’ campaign with it’s new ‘better births’ initiative three years ago.

Whilst this is true, I think it would be hard to argue that the normal birth campaign had really ceased until very recently. The campaign website was active until May this year and other documents, such as the RCM’s  criticised ‘top tips for normal birth’ were  transferred to the new website.

Old news or not, it’s clear most people weren’t aware of these changes, which have been welcomed by organisations such and Sands, Action Against Medical Accidents (AvMA), the Birth Trauma Association (BTA) and most importantly, women and families.

Sands

Personal Experience

Joshua Titcombe

My son’s death in 2008  was not related to the mode of his delivery (he was born a healthy baby following a vaginal birth), but his death was  characterised by midwives not communicating and involving doctors earlier.

After Joshua’s inquest in 2011, the Coroner wrote what was called a ‘rule 43’ letter, now known as a ‘prevention of future deaths’ report. I’ve copied a key extract of this letter below.

Rule 43
As the Coroner alludes in his letter, this was the second time he had had to raise similar issues. The other case the Coroner refers to is that of baby Alex Davey-Brady, who died at the same maternity unit where Joshua was born, just a few weeks earlier. This article  from 2011, talks about what happened to baby Alex.

An independent investigation was commissioned into the maternity services at Morecambe Bay. In 2015, the investigation report was published.  This found that 11 babies and one mother died avoidably at FGH (these figures included Joshua and Alex). The report identified (amongst a number of other serious issues) that “care in the unit became strongly influenced by a small number of dominant individuals whose over-zealous pursuit of the natural childbirth approach led at times to inappropriate and unsafe care”.

Denial

This finding of the Kirkup report has been met with denial from some. For example these words  from the former RCM President, Lesley Page:

“The press has picked up on the report’s emphasis on “the ethos of normal or natural birth ‘at all costs’ at the unit which resulted in inappropriate and unsafe care” I searched carefully to find out what was the basis of this emphasis but couldn’t find much.”

The RCM have since clarified that they do formally accept the Kirkup report findings relating to Morecambe Bay, but they are adamant that their normal birth campaign was not a factor. This despite one of the witnesses quoted in the Kirkup report as saying “…there were a couple of senior people who believed that in all sincerity they were processing the agenda as dictated at the time… to uphold normality.”

A small,  but influential group of individuals have responded with hostility and anger to the recent media coverage, for example Sheena Bryon writes here:

“…this post is referring to recent ludicrous press claims in several newspapers, of a non-existent ‘cult of normal birth’ by midwives, and that mothers and babies are suffering because of it. These stories are fear-mongering untruths, aimed at damaging a profession, and limiting women’s autonomy and choice. And, they are adding to the fear amongst pregnant women, that already prevails. Shame on you all.”

The blog post above is wrong to claim there is no evidence to point towards this issue either being real or not impacting on the safety of care elsewhere.

Parents of babies who died at Shrewsbury and Telford have relayed their fears that this issue was a factor in the tragic outcomes for them.

Recent media reports have highlighted that the number of claims for newborns suffering cerebral palsy or brain damage in 2016/17 was almost 4 every week, an increase of 23% from the previous year.

Of course, there are many factors that influence these outcomes. Staffing levels, continuity of care, availability of senior obstetricians and a culture of learning and supporting staff is vital. Safe and effective maternity care also relies on effective multi-disciplinary team working. However our experience, and the experience of many families I’m met over the years, is that there are some elements within the midwifery profession that don’t engage with the wider multi professional team soon enough, and this is sometimes influenced by an over zealousness to achieve a natural birth experience without any medical intervention

It would be wrong to claim this issue was the only important factor, that midwives alone were responsible or  not to acknowledge that in some maternity units this may not be an issue at all. However, it is also completely wrong to dismiss the issues as ‘fear-mongering untruths’.

One of the most positive outcomes of the recent media reports around these issues, is that so many women and families have been speaking about their experiences. To improve care, we need to listen to experiences like these, not dismiss them.

Jane Merrik

We also need to listen to and not dismiss, the views of other professionals critical to providing safe maternity care – like those of Dr David Bogod who wrote the following letter in the Times this week.

Bogod

Amongst the most powerful responses I’ve read, was this blog by Nicola Wainwright, a partner in Leigh Day’s Clinical Negligence team and sadly someone who works daily to understand why the most tragic outcomes occur. Nicola writes:

“…I am sorry to say I have met too many parents who did feel that their midwife’s ideology of achieving a ‘natural birth’ without any medical intervention, rather than their wishes or their and their babies’ safety, dictated the way their labour and delivery was managed….”

My plea for the future

I’ve been saddened by some of the responses I’ve seen in recent days, some of it directed at me. There is some irony that the people who claim that the recent media reports highlighting these issues are nothing more than ‘fear-mongering untruths, aimed at damaging a profession…and adding to the fear amongst pregnant women’, are the same people who promote phrases such as ‘obstetric violence’. Whilst it’s vital to recognise there are real and serious issues relating to intervention and consent, this language must terrify women and instil mistrust.

My personal belief however, is that the vast majority of midwives, doctors, women and families, recognise that whilst these issues aren’t everywhere, they do exist and change is welcome and needed.

My plea for the future is that midwives, obstetricians, paediatricians and anaesthetists work together collaboratively in the best interests of the safe delivery of the new born child, and that no unnecessary risks are taken because of any deeply held ideology. A natural birth is the aspiration of many – but not at any cost, and not at the cost of a mother’s or new born’s wellbeing.

There is a huge amount of good work currently happening to improve maternity services. The end of the RCM’s normal birth campaign can only help.

 

 

 

Do we need a review of Midwifery training?

I have been given permission to share this message by the experienced midwife who sent it to me. The midwife wanted to remain anonymous, which I think is a sign of an issue I’ve certainly experienced –  that there is a real fear of raising and debating these issues as when people do, it often generates defensive / hostile responses from some.

Much of this rings true for me, having lost Joshua due a lack of awareness of the midwives looking after him in very basic signs of neonatal sepsis and also being contacted by many families who have experienced loss and harm and listening carefully to their stories.

 Maybe it’s time to review midwifery training to incorporate these lessons? 

“James I am really concerned that part of the problem with low risk perception in midwifery is that the majority of our workforce are no longer dual trained midwives. Those of us left who are also registered nurses will be mostly retired in the next ten years. 

The transition of this workforce to direct entry midwives has coincided with a greater number of women with increased risk factors. This includes women having first pregnancies at a later age. The average age for mothers in 2014 was 30.2 years. There are higher levels of obesity and increased levels of pregnancy induced diabetes. Over a quarter (27.0% of live births in 2014 were born to mothers outside the UK). This greater ethnicity has brought an increase in indigenous physical, mental and social health issues. There are a greater number of women who have moved away from their support network or are unsupported from partners. There is an increase in female smoking, alcohol and substance misuse. There are a number of women having babies who may not have previously survived childhood illnesses or ever contemplated pregnancy (e.g. renal, cardiac disease and some neurological conditions). This explains part of the the reason there has been a reduction in maternal mortality from pregnancy related conditions in the last ten years but three quarters of women who died had a pre-existing medical or mental health condition before they became pregnant. This was mainly pre-existing heart disease, neurological conditions or mental health problems. With the possibility of complications in any mother or baby, midwives need extensive knowledge of co-morbidities and the skills of meticulous monitoring we had to develop as nurses. I for instance cannot listen to a fetal heart without feeling the maternal pulse and assessing its volume, rhythm and character whilst looking at the mother’s skin tone and respirations. Noting her skin temperature, breath smell, temperament, body odour and basically scanning her visually as a six sense before even carrying out any further observations. Hearing a blood pressure with your ears rather than reliance on an electronic sphygmomanometer provides so much more reliable information.

 I would not think of caring for any woman without carrying out meticulous observations of both mother and baby at every point of contact because they are so vulnerable: every step of the way. It is not about medicalising a pregnancy, it is about the fact any woman potentially can develop complications at any stage in the pregnancy, during labour and postnatally. Early recognition, detection and prevention of an adverse outcome is key. I just wonder without an extensive nursing training, that many what I would term as red flags, go undetected.
Of course the same goes for caring for a newborn. That six sense of meticulous observation and assessment. I can never understand how some midwives do not even do observations and teach the mothers at the same time how to recognise abnormality in their babies. As a registered nurse we had to do placements in medical, surgical, paediatrics, maternity, psychiatry, A/E, community, orthopaedics, elderly and social care and ITU…..this does not happen anymore in nursing. There is no longer a paediatric, maternity and psychiatric placement..as these are covered by individual qualifications. Another gap in knowledge risk for the workforce.

For those of us left who are dual or triple trained, we had to be a state registered nurse with qualified experience as a registered nurse before doing midwifery. Hence we were a naturally older workforce starting training. We had the same if not more education input but it was within the midwifery unit. We were paid as registered nurses and were already a highly skilled workforce on starting our training which was a further 18 months on the 3 years training we already had. There were no long uni holidays just the same as everyone else. Tutors all on site working alongside you and those who were mentoring you would turn up often unannounced, day and night. Taking midwifery to university put a halt to the apprenticeship style of learning. We did not just have one of two mentors; there was a crowd effect of learning, nurturing and supervision.  

I totally agree midwifery and nursing should be recognised as a degree level course but education should be moved 100% back to the midwifery units (this is where the education team should sit). Separating theoretical education from practical experience can cause break down of communication and disjointed learning. I have not posted this as a general comment as there are very strong opinions to the contrary. My fear is it will worsen now midwives have to pay tuition fees…..it’s a big financial commitment to study for an additional course and this will further deter nurses from entering the profession. 

This could all be changed by valuing the workforce. Midwifery and nursing students should be paid for working: a band 4 salary. Registered nurses should be encouraged to take up midwifery with the incentive of maintaining a band 5 or 6 salary throughout their training (this should be an additional 18 months). This would solve part of the crisis of lack of recruitment, staff shortages and massive gaps in availability as seen in our current supernumerary student workforce. Bringing back 7.5 hour shifts will reduce the high incidence of sickness, burn out, mistakes because of tiredness and it will also reinstate that valuable shift change over period where so much learning took place. It also allows greater continuity for patients.”