Monthly Archives: September 2020

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.