Author Archives: James T

Trust after harm

In October 2008, our world was different. Our daughter Emily was just three and a half years old and at the time I was working as project manager at a large nuclear site in Cumbria. At 7.38am on 27th October 2008, our second child Joshua was born at Furness General Hospital (FGH), part of the Morecambe Bay NHS Trust. 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 as if it was yesterday…

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

I remember 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. 

Joshua was transferred by ambulance to a specialist unit in Manchester and my wife and I followed him by car. At this point we were uncertain as to what was wrong. We were told there might be a problem with his heart or his oesophagus, but even then, these explanations did not seem to fit. 

My wife had been feeling unwell in the days before Joshua was born and shortly after his birth, she collapsed with a high temperature and was given intravenous fluids and antibiotics. She recovered quickly, but we both raised concerns with staff about Joshua – if my wife needed antibiotics, wasn’t Joshua also at risk of infection? Despite raising these concerns with staff, we were repeatedly reassured that ‘Joshua was fine’.

Surely his collapse 24 hours later could not be due to infection? Not after we had specifically raised concerns with staff about this and been reassured repeatedly that Joshua was ok.

The following day the team in Manchester confirmed our fears; Joshua had collapsed due to an overwhelming pneumococcal infection – the same strain that had now been identified as having caused my wife to collapse shortly after the birth. Questions about how this could have happened raced around my mind. Could I have done more to raise concerns and insist Joshua was seen by a paediatrician sooner? These feelings of regret and guilt have never left me. 

But these questions had to be put on hold for now. Joshua was still fighting for his life and all that mattered was getting him the right care and treatment so we could bring him home. 

At Manchester we were told that Joshua’s best option was to be flown to a specialist unit in Newcastle to be put on a heart and lung machine for babies. The treatment had risks but the unanimous view of his clinical team and our family, was that this treatment would give Joshua the best chance of recovery. 

Joshua was flown by helicopter to Newcastle and for a final time, my wife and I followed him by car. When we arrived in Newcastle, Joshua had already been hooked up to the medical machinery that we hoped would save his life. We were greeted by a kind consultant who told us that Joshua’s prognosis was good and showed us a wall of cards, letters and photos from the families of other children who had been cared for of the unit and had  recovered and were now doing well at home with their families.

We had 7 hopeful days in Newcastle, Joshua sedated but able to open his eyes and squeeze a finger.

We hoped that we would get to take our baby boy home too, but that was not to be.  Those hopes were dashed when he died at just 9 days old as a consequence of internal bleeding caused by the damage the pneumococcal infection did to his lungs. 

Although over a decade has passed since these moments, I remember them as vividly as if they had happened just yesterday. Seeing Joshua for the first time after his death with all the tubes and medical equipment removed – he looked like a perfect baby boy. How could have had died for want of a simple dose of antibiotics at the right time?  

The loss of any child in whatever circumstances is a life changing tragedy – but coming to terms with Joshua’s death was made incalculably worse by the way the trust and healthcare system responded. 

Crucial medical records of Joshua’s observations went ‘missing’, staff accounts of what happened at Furness GeneralHospital conflicted with the events as my wife and I remembered. The initial report from the hospital concluded that Joshua’s observations in the 24 hours after his birth before he collapsed were all within ‘normal’ limits and that therefore no one was to blame for what happened. 

As Joshua’s father, I could not accept these false narratives. I had failed to keep Joshua safe during his short life, but I wasn’t prepared to allow the truth about his death to be swept under the carpet.  I soon discovered that the healthcare system, it seems at almost every level, was not open to looking for, let alone acknowledging the truth about what happened to Joshua and why. 

The journey since has been long, hard and at times lonely, but eventually we did establish a truthful account of what happened to Joshua and in doing so uncovered a far wider scandal at the maternity unit where he was born. After meeting other families who had experience of tragic outcomes following poor care at same unit, I started a campaign group and worked to try and secure a national inquiry into the safety of the unit. The campaign was successful and the Morecambe Bay Investigation report, chaired by Dr Bill Kirkup was published in March 2015. 

The report concluded that between 2004 and 2012, a ‘…lethal mix of failures’ had led to the avoidable death of 11 babies and 1 mother at Furness General Hospital – Joshua was just one of many preventable deaths.  It described the maternity unit where Joshua was born as characterised by ‘…denial and cover up…’.   The report made 26 recommendations for national change and triggered a programme of work in England with the aim of halving avoidable harm in maternity units across the country by 2025. 

The maternity unit  where Joshua was born no longer exists. It has been replaced by a brand-new facility, the South Lakes Birthing Centre which opened in 2017 – a state of the art unit designed with input from mums and families in the local area.  Outside the new unit now stands a beautiful memorial to the 11 babies and 1 mother who Dr Kirkup found had died following serious failures in care. As well as remembering lost loved ones, the memorial is also a symbol of learning, forgiveness, and hope.

Amongst the national changes that have happened since the Morecambe Bay Investigation report was published, Englandnow has a new Healthcare Safety Investigations Branch (HSIB). This new organisation has a remit to undertake national investigations into patient safety issues in the NHS, using a methodology that focuses on learning and not individual liability or blame. As well as this national work, HSIB now also undertakes independent investigations into the most serious cases of unexpected poor outcomes in maternity. 

If what happened to Joshua happened today, an independent investigation focused solely on learning would take place without delay. It is hard to overstate the difference I believe this would have made – not just to our family, but to other mothers and babies as well as healthcare professionals at the trust. 

One of the saddest revelations of the Morecambe Bay Investigation was that after Joshua’s death, 6 other babies died at the same unit due to a similar pattern of systemic problems in the way care was being delivered. As human beings, even when the consequences are life changing, I believe that most of us have the capacity to seek to understand and forgive individual, unintentional mistakes. But when faced with denial, cover-up and a failure to learn, forgiveness and resolution become almost impossible. 

I no longer work in the nuclear industry and instead now spend my time working and campaigning for safer healthcare. Along this journey I have had the privilege to meet many other people who are working to improve patient safety, including other bereaved families who have trod a similar path. I now understand that our experience after Joshua’s death was not unique – the response we experienced and the battle we had to endure to establish what really happened and why – is sadly all too common,  not just in our healthcare system, but in other healthcare systems around the world. 

Although there has been some crucial progress in the years since the Morecambe Bay report was published, the NHS has still not succeeded in changing many of the key systemic issues that contributed to what happened at Furness General Hospital.  In March 2020, the UK regulator of NHS hospitals, the Care Quality Commission (CQC) published a report which concluded that the issues identified in the Morecambe Bay Investigation ‘…staff not having the right skills or knowledge; poor working relationships between obstetricians, midwives and neonatologists; poor risk assessments; and failures to ensure that there is an investigation and learning from when things go wrong’, were ‘….still affecting the safety of maternity care today’.

Change can feel painfully slow, but I haven’t lost hope that we will one day reach a much better place in healthcare and be able to look back on stories like Joshua’s with a sense of incredulity that things could ever have been that way.  But I do not believe that we will get there without a fundamental shift in the way healthcare systems manage patient safety risks and respond to harm.

What still needs to change?

In the aftermath of Joshua’s death, as well as struggling to deal with trauma and grief, I was also consumed with a burning sense of injustice and anger. The more I learned about the culture of the unit where Joshua was born, the more I realised that Joshua’s death was far more than an unavoidable accident. The Kirkup report concluded that the first opportunity that the trust had to identify serious systemic issues was following the avoidable death of another baby in 2004 – more than 4 years before Joshua died. But the investigation that was carried out by the trust was superficial, ‘…protective of the staff involved’ and failed to result in any meaningful action to learn from what happened and make the service safer for others.  

We live in a world where human beings are prone to error and mistakes – but where that normal variation in human performance can lead to serious or catastrophic outcomes, for example the nuclear industry or in aviation, considerable effort is usually placed on designing and building systems and processes to prevent those mistakes leading to harm.  

Joshua was born in a maternity unit characterised by dysfunction – staff lacked basic competencies and skills, processes and guidelines were out of date, midwifes and doctors perceived themselves to have different objectives and there was distrust and blame in place of teamwork and shared goals. 

Overriding all of this was a leadership culture that was toxic to transparency, learning and improvement. The trust at the time was preoccupied with achieving ‘Foundation’ status, which would have given them greater control and financial freedom – but crucially this involved persuading various regulators that they met the appropriate standards of governance and quality. A seriously dysfunctional maternity unit with a history of avoidable harm was a problem that the senior leadership team sought to manage – they focused on doing everything possible to reassure the local community and regulatory system that their services were safe. 

Unpicking all these behaviours is complex – the healthcare system at the time seemed to be influenced by perverse incentives – pursuing strategic objectives and meeting performance targets, seemly put above the safety of mothers and babies. But who was ultimately responsible for this culture and why was so little done to challenge it at the time?

In terms of the healthcare professionals who were looking after Joshua that fateful day, to what extent should they be blamed for what happened? Who was ultimately accountable for the system that allowed such a preventable death to happen? What processes should have been followed to respond to what happened? What duty of care was owed to Joshua’s family and the staff involved and what responsibility did the trust have to ensure every possible lesson from what happened was taken? 

Over the years I’ve learned a great deal about how our healthcare system works. The simple truth is that existing systems, processes and regulatory incentives and levers often make it hard for healthcare professionals do the right thing. In the aftermath of harm, the relationship between the patient or bereaved family can almost instantly become adversarial. In Joshua’s case there was initially no inquest – we were told to raise our concerns about Joshua’s care via a formal complaint.

Rather than our family and the trust working together via a process to understand and learn, immediately the process became one of ‘allegations’ for the trust to respond to. This  happened with oversight of the trust legal team whose remit is to carefully ensure that the responses that are provided protect the organisation from any admission of civil liability. 

For individual healthcare professionals, the vast majority of tragic outcomes like Joshua’s death occur without any deliberate intent, but rather as a consequence of normal human performance/error and a combination of unsafe systems and processes. However, healthcare staff often have little faith that trust investigation processes will be candid about systemic problems and instead fear being singled out for blame or referral to a professional regulatory body.  

Whilst none of these factors can justify acts of dishonestly or covering up, countering this  fear is crucial if we want to create the kind of learning culture that has played such a decisive role in making other high risk sectors safer. Furthermore, the focus on inappropriate blame detracts from where clear and meaningful accountability should lie.

Although it took nearly 10 years, eventually I did manage to reach a point of reconciliation, healing, and some extent – forgiveness following what happened to Joshua. 

After the Morecambe Bay Investigation report published, the trust agreed to carry out some further work around Joshua’s death. Although 8 years had passed, they carried out the kind of comprehensive investigation that should have happened if current best practice guidance was followed. The investigation highlighted serious failures that other external processes had already found but also issues with Joshua’s care and treatment that we were not previously aware of. But the crucial difference with this investigation was that the trust themselves had carried it out – for the first time since Joshua’s death, I felt confident that the trust themselves owned and understood Joshua’s story and therefore could be trusted to take it’s learning forward.

The final aspect of the work the trust carried out was by far the most difficult but also the most healing. A midwife who had a direct role in failures relating to Joshua’s care had been heavily criticised by the Nursing and Midwifery Council. The resulting hearing concluded that her role relating to Joshua’s death was serious enough to warrant a suspension from the professional register for 9 months.   The hearing gave the trust a dilemma; should they continue to employ a member of staff who was unable to practice clinically and had been subject to heavy criticism relating to the preventable death of a baby, or should they dismiss her? Instead of rushing to make a decision that on face value, might have seemed like the right and ‘just’ thing to do, the trust asked if I might be willing to meeting the midwife to talk through what had happened and what had been learned.  I agreed to do so.

In all the years that had passed  since Joshua’s death, the only time I had been in the same room as any of the staff involved in his care was at Joshua’s Inquest (which occurred nearly 3 years later) and whilst giving evidence in formal Fitness to Practice processes. These were bureaucratic processes, determined by legal advice – cold, compassionless, and inhumane.  

In preparation for the meeting I thought long and hard about what I wanted to say. I wanted to tell the midwife concerned that I didn’t blame her for the mistakes made in Joshua care and that I knew she didn’t intend for the outcome for Joshua to be what it was – but I also wanted to tell her how the lack of honestly afterwards had impacted on my life and of my  anger that Joshua’s life seemed to matter so little. 

When I walked into the room, after a few words of introduction by the facilitator – I was given the opportunity to talk directly to someone I thought of as  caring very little about what happened to Joshua and the consequences on our family. 

I only got through half of what I wanted to say… that I didn’t blame her for the mistakes that led to Joshua’s death…. but I could not get any further. The midwife broke down in tears and told me that every day since Joshua died, she had blamed herself for what happened – that she wished she had done things differently and that she would carry that for the rest of her life. It was not fake or rehearsed emotion and at that moment, the image I had in my mind of an uncaring and callous person disappeared. In an instant my anger lifted. We cried together and had a hug.

I left that meeting with a sense of healing but also profound sadness. Sadness that we weren’t able to meet much earlier and sadness that on the long journey since Joshua died – somehow humanity and compassion were sucked out of the process – at the very time when kindness was needed the most. 

A recent and welcome movement in healthcare is the focus on ‘just culture’. If we genuinely want to make stories like Joshua’s a thing of the past, we must fundamentally change the way our healthcare system responds to error and harm.

If we get this right, the aftermath of patient harm will cease to be characterised by adversarial processes, denial and cover up that are so toxic to learning and improvement. Instead we can focus on the people who have been hurt and what they need to rebuild trust, to forgive and remember.  

We will see a shift away from the hunt for individual blame allowing a much greater focus on the most important accountability of all – that which is owned to future patients to ensure they don’t come to harm through the same mistakes happening again.  

James Titcombe – 17th September 2020

One year later: Where has my trust gone and when is it coming back? – My reflections on the impact of being a witness in a Fitness to Practise (FtP) hearing:

By Sarah Seddon

What do I feel when I think back to this time last year? Ingrained on my mind, it was the first day of the FtP hearing of my healthcare professional where I was cross examined on the death of my baby.  A year has now gone by: the caution order has expired, the phantom kicks have stopped, the dust has settled and I’m back at work.  The girls have nearly completed another year at school, but there are still people missing.  My memories of Thomas have been tarnished by the actions of my healthcare professional after his death, by the way that his death was investigated and by the way that the FtP hearing was conducted. 

Looking back, it feels like such a blur and an enormous explosion of emotions: terror, panic, sorrow, anger, pain, exhaustion, depersonalisation, loneliness and mistrust… but on the edge of this huge dark cloud was a little shining star of love, support and hope. This was in the form of my husband who was always there (even when he wasn’t physically allowed in the room), family and friends at home (keeping a close eye on our girls) and the Public Support Service who kept me breathing and stopped me shaking.

Some of the long days have now rolled into one in my memory.  But I can still remember every second of some of the hours so clearly: the words that the barrister said to me, the blame, the contempt and the patronising, inaccurate descriptions of what had happened to my baby which I was not permitted to correct.  There are many things that I want to remember. And many things that I can’t forget.  And still so many things that I want to say to the people who were part of my FtP journey:

Dear Regulator CEO,

Thank you for prioritising person-centred regulation over the past year, but there is still so much to be done to ensure that these efforts are not tokenistic and that the people are at the centre of your processes.  Every member of your staff needs to undergo safeguarding training and to appreciate that they are dealing with real people and their lives on a daily basis.  You are still asking too much of your witnesses – asking us to put our lives on hold, re-live our most traumatic moments, step into a brutal, aggressive, cross examination in a public room with no real representation; is this fair and necessary to achieve the right outcome? You still do not formally value the patient story or impact statement and do not encourage mediation.  Yet any professional who provides care should (in my opinion) seek to understand how their actions impact on their patients’ lives and demonstrate reflection on this.  It’s been a year since your organisation ‘disposed of the case’ and effectively disposed of me.  But I want to continue to stand up for the people who don’t have a voice – to remind you that the repercussions of being a witness are still affecting my life now and will be for a long time.  How can I gain trust in regulation again?

Dear Hospital,

Thank you for acknowledging and trying to rectify the things that went wrong in my care and subsequent investigations.  I’m still however left constantly wondering how events may have unfolded if you had allowed me to sit down and talk to my healthcare professional as I requested so many times.  I still believe that mediation could have led to a different (better) resolution for both of us instead of the horrific FtP process which took over 2 years to conclude (and is still very much ‘in-process’ in my head).  I’m still angry that your procedures and systems weren’t robust enough, which had a huge impact on the outcome of the hearing.  It’s now over 3 years since Thomas died and I am still terrified of ever needing to receive treatment from you in future.   I’ve lost that trust.

Dear Healthcare professional,

Everyone is human and makes mistakes, but professionals do not try to cover them up.  I am angry that you allowed your barrister to try to blame me for what happened and to be so vicious in the cross examination.  I’m angry that you brought up personal details about the aftermath of Thomas’ death in a public forum when they bore no relevance to the issues being examined.  You let me down when I was at my most vulnerable and I now find it so difficult to trust people.  Will this trust ever come back?

Dear Defence Barrister,

I can’t find the words to explain how your cross examination affected me and I struggle to understand how anyone could do this for a living.  I’ve stopped having nightmares about you now.  I have learnt that telling the truth is not always enough.

Dear Case Investigators,

I still think about all the times you fobbed me off during the years of investigations and refused to take the time to give me explanations or amend processes to reduce my distress.  The times when you gave me incorrect information or didn’t bother to get back to me as promised, yet didn’t see a need to apologise.  I know that to you I was just a piece of evidence – but I’m actually a person and my child’s death has had a significant impact on my life.  I’m sure you don’t think about my case at all now, but I often think about the way you ‘dealt’ with me.  And I make sure that I don’t ‘deal’ with people in that way.  To gain trust, you need to be compassionate and to treat people with respect.

Dear Panel Members,

Why didn’t you step in and intervene during the cross examination?  Would you allow your loved ones to be treated in this way without speaking up?  And why did you ignore the additional information which came to light and subsequently led to a preventable second investigation? Surely your role is to look at the wider picture?  Why didn’t you apologise when you spelt my son’s name incorrectly? That would have just been the human thing to do.  The decision of FtP panels must stand up to public scrutiny and there should be a clear explanation of how you reviewed the evidence and reached your decision.  But your decision was contradictory – it still does not make sense to me now and no one within the organisation has been able to explain it to me.  So how do I trust that you reached the right decision?

Dear Public Support Service, Friends & Family,

I have nothing to say except “thank you”.  You are all amazing and have brought a little bit of faith, trust and hope back into my life. 

Dear Thomas,

I miss you every day.  But you have taught me so much and I see you in your sisters.  Your life was so short and precious and I hated seeing you reduced to the title of ‘Baby A’, removed from me and discussed as simply a piece of evidence.  My “new year” always starts around now – another year without my baby and I wonder where I will be this time next year.  I want to enjoy every minute with my beautiful family and I want to try to remember you as the little person that you were, with all the things that made you unique.  I want to remember you with love and not with all the fear, distress and broken trust of the FtP proceedings.

If you work in FtP at any point of the process – please, please remember that every action you take or don’t take can have lasting implications for many years following what you may view as the ‘conclusion’ of the case. The sole purpose of FtP is to establish trust. Your role is to ensure that the public can trust the systems in place to make sure their healthcare professional is fit and able to do their job safely and effectively. The trust that we have to invest into the healthcare system is immense as we are all at our most vulnerable when we receive care. Our health goes right to the core of who we are as people and if our health is broken or our trust in healthcare (or its regulators) is broken then the consequences are all-consuming. And I am still unsure whether it is possible to regain that trust. Whoever you are, please prioritise trust and compassion.

About the author

Sarah Seddon is a mum of five children: 3 fabulous girls and two much-missed boys. Her second son (Thomas) was stillborn in May 2017. The lack of candour following Thomas’ death and the conduct of the serious incident investigation impacted significantly on Sarah and her family. The local investigation was followed by a Fitness to Practise (FtP) investigation where Sarah experienced how damaging, dehumanising and traumatic FtP processes can be for patients who are required to be witnesses. Sarah currently works as a clinical pharmacist and has been working with several healthcare regulators over the past few years to promote the importance of compassionate, person-centred regulation.

The Kirkup Report 5 years on…

kirkup

This week marks the fifth anniversary of the publication of the Morecambe Bay Investigation, chaired by Dr Bill Kirkup. The report exposed a “lethal mix of failures” in the care of mothers and babies at Furness General Hospital between 2004 and 2012. My son Joshua was one of 11 babies whose deaths Dr Kirkup found to have been avoidable.
The report made 26 national recommendations, and triggered a major review of maternity services across England. The government subsequently announced an ambition to reduce avoidable harm in maternity services by 50% by 2025. Today, over 20 national initiatives are underway, including the independent investigation of many of the most serious events by a new body, the Healthcare Safety Investigations Branch.

Despite this progress, the vast majority of Kirkup’s national recommendations have still not been implemented half a decade later and clear evidence is emerging of  serious safety problems in other maternity services.

In November, an interim report was leaked revealing problems with maternity safety at Shrewsbury and Telford Trust; the report highlighted several themes identical to those at Furness. Then last month, NHS England announced an inquiry into the care of mothers and babies at East Kent, after a coroner ruled the 2017 death of baby Harry Richford at a Margate hospital “wholly avoidable”. Dr Kirkup’s appointment as chair of this new inquiry signifies how seriously the situation is being taken but also adds to a weary sense that history is repeating itself.

Infuriatingly, many of these problems could have been avoided. In early 2016, the Royal College of Obstetricians and Gynaecologists published a review of maternity services in East Kent Hospitals NHS Trust, highlighting several serious issues which, a year later, would be manifested in failures in Harry Richford’s care. It is deeply alarming that this report wasn’t shared with the Care Quality Commission (CQC) until 3 years after it was completed. The Morecambe Bay Investigation specifically recommended such reports be shared with CQC, who would then disseminate the learning to other NHS trusts – yet systems are still not in place to ensure this happens.

In the case of Harry Richford, the coroner was also critical of the trust for classifying baby Harry’s death as “expected”, and not notifying the coroner. The Morecambe Bay Investigation report recommended the development of a protocol setting out the duties of trusts and staff relating to inquests; specifically, to ensure trusts didn’t attempt to “fend off” inquests in the future – another recommendation that simply hasn’t happened.

Other  Kirkup recommendations where progress either hasn’t happened or remains limited include:

  • A review to look at the education and training opportunities afforded to smaller maternity units
  • The development of clear, mandatory standards for local investigations into maternity safety incidents
  • The development of national standards setting out the professional duties and expectations of clinical leads and other senior managers
  • A national review of the NHS complaints processes
  • Systematic recording of perinatal deaths at an individual unit level, taking into account transferred babies by place of birth
  • The extension of the duty to candour to mandate the involvement of patients and families in the investigation of serious incidents
  • Strengthening the national whistleblowing policy to protect the interests of whistleblowers and ensure ‘systematic and proportionate’ responses are made by trusts relating to concerns raised by staff

More concerning still, one of the most positive responses to the Morecambe Bay Investigation, the establishment of a £8.1m fund to support high-quality, multi-professional maternity safety training of 30,000 staff to date has been discontinued by the government.

The foreword of the Morecambe Bay Investigation report warns that unless the lessons from Morecambe Bay are learned, more scandals will emerge. Five years later, that warning seems increasingly accurate. The NHS has an unfortunate history of repeating its mistakes. The government needs to act now on maternity care to prevent that from happening.

When no one is looking…

On November 5th 2008, my family suffered a terrible tragedy when our new born baby son died in appalling circumstances following serious failures in his care at Furness General Hospital (FGH)

Whilst Joshua was still alive and fighting for his life at the Freeman Hospital in Newcastle, we recognised that something  had gone very wrong with his care and, prompted by my father’s advice, my wife and I made careful notes about all that we remembered had happened. After Joshua’s death, I typed up these notes and added a list of questions we wanted the trust to answer. In the week after Joshua’s death, my father and I handed this document to the Chief Executive’s office at the FGH (where it was stamped and dated as received).

The document is available here: Joshua Chronology. Please note that you may find this document upsetting – it contains a raw account of what happened to Joshua and photos of him before and after his death.

At this moment in my life, nothing could have prepared me for what was going to follow – the lengths that the trust would go to in order to cover up the truth about what happened and how other organisations that should have been there to step in to protect other mothers and babies were to fail.

The serious dysfunction that led to Joshua’s avoidable death continued at FGH for a number of years. The full scale of the problems at the unit were laid bare by the Kirkup report, published in March 2015. The report concluded that there had been a ‘lethal mix of failures’ at FGH that led to the avoidable death of 1 mother and 11 babies.

One of the organisations that catastrophically failed in its duty was the Nursing and Midwifery Council (NMC). In May 2018, the Professional Standards Agency (PSA) published a detailed review of how the NMC had handled the cases arising from the serious failures in care at FGH, including Joshua’s death. This report is available here. Unsurprisingly, the report led to some serious criticisms of the organisation, I wrote a commentary piece for the Guardian here.

Perhaps the most damning conclusion of the PSA report was paragraph 5.48:

“In our view, transparency involves being open about mistakes, demonstrating learning and can include providing information even where the organisation is not required to do so or where a more restrictive approach is permissible. The NMC’s registrants owe a duty of candour and the approach that the NMC took …. did not convince us that the NMC was applying that duty to itself.”

Today, the NMC have published a new report and statement that throws a little more light on why the PSA came to this conclusion.

A bit of background…

In March 2016, the NMC were finally planning to hold 2 hearings relating to the circumstances surrounding Joshua’s death. Given that this was over 7 years after the events themselves, the NMC had been justifiably criticised for taking so long to act.

These first hearings related to my wife’s care before Joshua was born. We had no strong views either way regarding the care at this point, but in the years since Joshua’s death we learned that the midwifes involved claimed that neither my wife nor myself had had any conversations with them  about feeling poorly in the week before Joshua’s birth. In fact we had discussed this in detail with the staff we spoke to during this time and we were simply reassured that the illness was ‘probably a virus’.  This was all clearly documented in our chronology document. We were deeply distressed that the staff involved were not being honest about this.

When the hearings themselves took place, my wife was asked to give evidence to the panel on 10th March 2016. During the hearing, a Barrister representing one of the midwives claimed that my wife and I were ‘unreliable’ witnesses, stating that that the first time we mentioned feeling poorly or unwell was at Joshua’s inquest hearing in 2011. The process of being cross examined felt like we were criminals on trial, rather than bereaved parents there to tell the truth about the death of our much loved child.

That evening, ITV news ran a story ‘Parents recollections branded ‘unreliable’ at midwives hearing’ and the following day the local paper ran a similar story in the headlines.

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We were devastated at these headlines and couldn’t understand why the NMC panel chair had not challenged the comments which clearly weren’t true. It just wasn’t true that the first time we had mentioned feeling poorly prior to Joshua’s birth was at the inquest, so why did the NMC panel not challenge this?

Subsequent to these events, the hearings ended with the NMC taking no action on the grounds that there was apparently no evidence to support the fact that my wife and I had told the midwives about feeling poorly. This felt like a gross injustice given we are both 100% sure such conversations happened (something the Coroner also fully accepted in his summing up of Joshua’s inquest in 2011).

Several phone calls and conversations with the NMC’s former CEO (Jackie Smith) later, and after I sent our chronology document via email to Jackie, it transpires that the NMC panel did not have the chronology document at all – it wasn’t included in the panel of papers given to them.

After the hearings had concluded, I wrote to the Professional Standards Authority (PSA) to express concerns about the way the hearings were handled by the NMC. Following a review, the PSA wrote to the NMC  upholding several issues raised and ruling that the NMC process during the hearings was ‘deficient’.

Bill Kirkup also commented on the situation:

My major concern is if the panel…didn’t have the relevant evidence in front of it then it’s difficult to know how it can come to a robust and defensible judgment.

This is all pretty grim stuff, it’s difficult to put into words what it’s like having to go to hearings where you have re-live the circumstances of how your baby son died, having to listen to people who you know are not telling the truth about what really happened, to see the person you love suffering as she has to relive the nightmare and then being  subjected to attempts to discredit your evidence and headlines attacking your credibility in the national media. I can honesty say that the process felt like the worst kind of mental torture imaginable.

But at least the PSA had set the record straight and the NMC would learn from what happened – right? Sadly not. What happened next is one of the most appalling episodes of cover up culture I’ve experienced in the aftermath of Joshua’s death (and there have been many).

To understand how the NMC subsequently behaved, it’s necessary to jump ahead somewhat to  the true reason as to why the chronology document referred to  wasn’t provided to the NMC panel. The truth (and we only know this because of today’s report) was that due to a series of cock-ups, the NMC’s solicitors (Capsticks) did not include the chronology document in the case files that were passed to the NMC. The NMC therefore did not have the chronology document in their possession (although they had been sent in separately on a number of other occasions). Knowing this truth, let’s consider how the NMC responded next.

The NMC’s response

 On 17th May 2016, the PSA wrote to the NMC setting out the concerns their review had found about the way the cases had been handled. These included the fact that our chronology document was not provided to the panel.

The NMC’s response to the PSA’s letter came on 20th May 2016. It can only be considered as hyper defensive. The letter stated:

…as you know, we do not accept there is a basis for your statement that our decisions were deficient and that we consider it is very misleading.

At the time, I was shocked at the attitude of the NMC in rejecting the PSA’s comments. The letter went on the give an account to the PSA as to why the chronology document wasn’t provided to the panel. The relevant extract from the letter is copied here.

Pic a

Not only had the NMC failed to be honest about the fact that the chronology document had been lost, they had now constructed a fabricated set of ‘reasons’ to give the false impression to the PSA  that the document had been considered before the hearing in order to maintain their position of ‘rejecting’ the PSA’s criticisms of their handling of these cases.

In a case where Joshua’s critical medical records had gone missing and there had been so much dishonesty and covering up, the NMC’s description of the contemporaneous  record of Joshua’s short life that my wife and I made at the time as ‘…of no positive evidential value’ was harrowing.

These explanations were repeated in letters to other people, including the Secretary of State for Health.

The Verita Report

The report published by the NMC today has been ongoing for well over year. There have been 4 iterations. The NMC have confirmed the total cost paid to Verita for this work was more than £151,000.  Whilst the report clearly identifies the reasons why the document was missing at the hearings, my strong opinion is that it fails to adequately explain the real reasons why untrue and misleading statements were given to so many people.

Furthermore, the latest version of the report has been significantly watered down to remove the most serious criticisms – comments where the Verita investigators make it clear that in their opinion, there was a likelihood that there had be an ‘…attempt to cover up.’

The NMC had already been publicly criticised for the way they handled the cases, to admit to the PSA that the reasons why an important piece of evidence wasn’t included at the hearings (which the NMC had taken 7 years to progress) was because the document had effectively been lost, would have been highly embarrassing. So rather than being open and honest about what happened, it seems clear to me that the NMC rejected the PSA’s criticism and instead created a false and fabricated account which justified why the document was not available to the panel.  I find the narrative that this happened due to ‘accidental factors’ highly implausible.

Furthermore, the only reason the truth has been established now is because of the  unusual scrutiny of the issue conducted by the PSA in 2018.

The culture at the NMC and its senior team at the time is evidenced by reading the full PSA report. This is an organisation that was willing to spend vast amounts of money redacting personal data requests, who it seems were willing to go to any length to defend themselves from valid criticism. This is behaviour that mirrors the very worst aspects of the cover-up culture that many families still experience from local healthcare organisations

nmc 3

One definition of integrity is ‘doing the right thing, even when no one is watching’; regardless of your views on today’s report, it seems clear that few of the people involved in these events would pass such a test.

Looking forward, I do believe that the NMC now has someone with genuine integrity at the helm. The statement the NMC have published today makes it clear that the organisation is committed to learning from these events.

The NMC must now ensure that the Fitness to Practice process is kinder for both registrants and families that go through it and most importantly,  must role model the same culture, values and standards of behavior it promotes for the people it is responsible for regulating.

The former leadership of the NMC ought to hang their heads in shame that they failed so catastrophically to ensure this was the case.

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.

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James Titcombe – 11th September 2017

 

 

 

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?

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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.”

Recent actions of the NMC – a fit for purpose organisation?

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Recent actions of the NMC – a fit for purpose organisation?

I had hoped that the days of needing to write blogs like this were over, but reluctantly I’ve decided that writing about this publicly is the right thing to do. This is a long blog, but if you are interested in culture and patient safety in healthcare, please read it.

Since Joshua’s death in 2008, which was finally comprehensively investigated by Morecambe Bay Trust late last year,  the number of organisations I’ve come into contact with has been huge. Many of these organisations failed to respond to Joshua’s death and related events at the hospital where he was born in a reasonable way. The Morecambe Bay Investigation report published in March 2015, sets out serious criticisms of organisations including the Parliamentary and Health Service Ombudsman (PHSO),  Care Quality Commission (CQC), North West Strategic Health Authority (NWSHA) and the Department of Health in some detail. Combined, system wide failures led to serious risks to mothers and babies at Furness General Hospital (FGH) ongoing for several years, resulting in the preventable deaths of 11 babies and 1 mother.

One organisation that didn’t come under much scrutiny in the Kirkup report was the Nursing and Midwifery Council (NMC). One of the reasons for this was because there wasn’t a lot to say about them, as at the time effectively they hadn’t taken any regulatory action what so ever, despite being made aware of the failures relating to Joshua’s death and other babies’ deaths as far back as early 2009.  Following the publication of the Morecambe Bay investigation report, the NMC gave assurances that they would rapidly progress the Morecambe Bay cases they had open and that they would also review the Kirkup report itself to see if any further action was necessary.

Sadly, the NMC’s action since has been described as ‘lamentable’ by Bill Kirkup and heavily criticised by the Professional Standards Authority (PSA) who described the NMC’s handling of the first 2 cases relating to Joshua’s death last year as ‘deficient’.

In a manner that many who have experienced avoidable loss in the NHS will recognise, the NMC’s response to these criticisms wasn’t to say sorry and commit to learn, but rather it was simply to declare that the NMC and the PSA had a ‘difference of opinion’ and to reject the criticisms.

Whilst these issues are disappointing, more recently the actions of the NMC have crossed a line that in my view ought simply not be tolerated.

The Kark Report 

In 2016, a midwife involved in Joshua’s death who  had been under deferred investigative processes by the NMC for several years, was sacked by the Morecambe Bay Trust following the tragic death of another baby. Subsequently, the NMC issued the midwife with an Interim Suspension Order (IO) to ‘protect the public’.

At this point I had a number of serious concerns about this situation. Firstly, the midwife in question was someone who I felt strongly had not only failed in her care of Joshua, but who had also been dishonest about what happened (the latter concern being the issue I would expect a professional regulator to take seriously). This particular midwife was also the author of an email which contained a draft report relating to Joshua’s death,  which she titled ‘NMC Shit’.

It is important to note that very recently the Morecambe Bay trust finally carried out a full investigation into Joshua’s death which concluded the following relating to the actions of this midwife:

“When Hoa called for help at around 2.30am on 28th October 2008, because of concern about Joshua’s breathing, it was ‘highly improbable that there were normal neonatal observations present’ at this time. This is at odds with the statement from the midwife responsible for Joshua’s care at this time who maintained that detailed observations were taken and that all Joshua’s observations were normal.  Whilst there are no records of any of the observations taken of Joshua at the time, (as Joshua’s yellow observation chart has been lost), the Trust acknowledges that this is not a credible version of events based upon the expert view.”

After writing to the NMC to express my concerns, Jackie Smith wrote to me to confirm that she had commissioned an external review. At this time, the NMC publicly said:

“Having now received a new complaint in relation to [the midwife], we feel that it is right that we review the actions that we have taken to date. As an organisation that is committed to continuous improvement we have asked an external adviser to help us undertake this review.”

At this point, I was reassured that the NMC were acting in a reasonably open and transparent way, believing that they had commissioned an independent review to look for opportunities to learn from these circumstances. However, when the review was completed, the NMC publicly commented to say that the review found that “…at no stage during the numerous reviews and investigations which took place was the threshold for applying for and imposing an interim order passed.”

However, when I made a formal request under the Freedom of Information (FoI) Act for the report to be released, the NMC stated that the report was subject to ‘legal privilege’ and they refused to release it. It has since been established that the report was actually carried out by Tom Kark QC (at a cost of more than £12,000 for 1 week’s work).

The concerns I have about this are as follows:

1) When the review was announced, the NMC publicly stated that they had asked an ‘external adviser’ to help undertake the work as they were an ‘organisation that is committed to continuous improvement’. This seems to indicate something quite different from commissioning confidential legal advice from a QC, which could be interpreted as a defensive act, rather than being about transparency and learning.

2) Having completed the review, the NMC have publicly reported on what the apparent positive conclusions of the review were; that at no stage “was the threshold for applying for and imposing an interim order passed”. However, at the same time, the NMC are using legal privilege to withhold the review’s criticisms.  In subsequent phone calls with the NMC, they let slip that actually the Kark report did contain serious criticisms , including an ‘over reliance on the Local Supervisor Investigation (LSA) into Joshua’s death, something I’ve been constantly raising with the NMC for a number of years.

The decision of the NMC to keep this review secret is truly bizarre and has received wide spread criticism.  In my view, these actions demonstrate that there is something wrong with the culture and leadership of the organisation.

The NMC still have one outstanding case open relating to Joshua’s death. It is now fast approaching what should be Joshua’s 9th birthday. These ongoing processes mean that we do have to relive what happened to Joshua – a death that was horrific. The NMC processes last year were perhaps the hardest and most upsetting thing my wife and I have had to do since Joshua’s death. Surely as an organisation, the NMC should be reaching out to families affected by their actions to share any understanding and learning they have and seeking to restore trust through being open and honest and demonstrating learning?

Are these really the actions of an ‘open and transparent’ organisation?  Is it right that registrant fees should be used by the NMC to carry out reviews that are then only partly published, whilst other parts that presumably the NMC’s PR team think don’t flatter the organisation, are kept secret?

More secrecy and defensiveness at a vast cost to registrants

Due to concern about the culture of the NMC and how they have responded to events at Morecambe Bay since being informed of serious issues in 2009, last year I made a request under the Data Protection Act (DPA) for all copies of any of my personal data held by the NMC. After several delays, the NMC eventually provided this information but when it arrived, I was truly shocked at the extent to which the information was redacted. Many documents were completely blank apart from just one or two words. Other documents revealed that the NMC had been monitoring my social media accounts; there were graphs showing the number of my tweets mentioning the NMC and 3 separate emails showing that the NMC had set up a Google Alert for ‘James Titcombe’.

I subsequently asked the NMC under the Freedom of Information (FoI)Act to confirm how much they spent on redacting my personal data, and to my total shock they confirmed that they had paid a top city law firm almost £240,000.

I’ve questioned the NMC on why they needed to use such high level and expensive expertise to respond to a routine request for personal data (all public organisations routinely respond to such requests and doing so certainly shouldn’t necessitate specialist legal advice). The NMC say that this was purely to ensure that the response met their obligations in an ‘open and transparent way’. However, the information released to me has clearly been redacted to a much greater extent than necessary. In fact, it is not possible to make any sense of the vast majority of information provided as in many cases, only a few words per page are all that remains visible.

In these circumstances, I felt that it was important to understand exactly what the NMC instructed the legal firm to do. If the NMC had only instructed them to prepare a fully open and transparent response to my request for personal data, why would releasing their full instructions to their lawyers be a problem?

However, the NMC have refused my FoI request for these instructions, claiming that they are legally privileged.

£240k is the equivalent of over 2,000 annual registration fees of the Midwifes and Nursing who should be able to have confidence and trust in their regulator to act properly and responsibly. As an absolute minimum, shouldn’t the NMC be required to be absolutely open and transparent about the exact scope of work, where the cost is so vast?

Professional Standards Agency (PSA) Investigation

With support from a number of  people, recently the Department of Health agreed to my requests for a fully independent investigation into the NMC’s actions and instructed the PSA to lead this work. It has since been confirmed that this review will include an investigation into the NMC’s secrecy regarding the Kark review, their approach to redacting personal data, the use of £240k of registrants fee’s and the refusal of the NMC to be open and transparent about their instruction to their lawyers relating to this vast sum of money.  Prior to the DoH writing to the PSA to confirm this investigation, the NMC have only ever been secretive and defensive about these issues. However, on the day the news was announced, the NMC put out a press release describing themselves as ‘…an open and transparent organisation, committed to continuous improvement.’

In my view, the opinion pieces from various newspaper reports below are much closer to the mark. What is truly difficult to fathom, is why no immediate action has been taken to restore trust in what is clearly an organisation with dysfunction leadership, badly failing registrants and letting down the very women, babies  and families who they exist to protect.

James Titcombe – April 2017

NMC First

NMC 1

nmc 3

NMC 2