I should be looking forward to my daughter's 31st birthday in May, but I'm not. I should be watching her progress through life, having conversations about things she is considering doing, decisions she has taken and regretted, and celebrating her triumphs. We should be laughing together, crying together and endlessly hugging. But we're not. The stark reality is that she passed away in January 2017 at the age of 23 years old.
Josephine never stood a chance. Born in London on 11 May 1993, clinical negligence resulted in catastrophic brain injury at birth, leading to a lifetime of profound disability.
If only this was just a story from history; if only the clinical negligence case against the health trust had made a difference, stopped it happening to other parents. As the Ockenden (2024) report shows, ‘families have…explained that they want what happened to them to matter and to ensure that in future voices, such as their own, are listened to and heard and that meaningful and sustained changes will be made to try to ensure that what happened to them will not happen to others in future’.
In 2000, when we went to court to have our settlement ratified, the judge said he had heard cases like ours so many times before. It left us feeling any hopes we had for changing the system were in vain. Now, 24 years on, it seems that nothing has changed. When I first read the Ockenden (2022) and Kirkup (2022) reports, I felt as though I were peering through a looking glass which was, in turn, mirroring past disasters. There seemed to be no end to the mistakes, no learning through the years, and I was left wondering whether the accountability will ever be robust enough to make lasting change.
I must stress that what happened to my daughter was a combination of the negligence of both midwives and doctors. We did not lose our baby, although my obstetrician said at the time that it might have been better if our daughter hadn't survived. We didn't have to mourn a tiny, short life as so many other parents have done. We know the story doesn't end for these families when they return home without their baby, those ‘life-changing tragedies’ that the Ockenden (2022) report highlighted, revealing the scarring of so many lives after the loss of an infant who should have lived a full life in the bosom of their family.
But our story is different. Josephine survived. What does being a survivor mean? Let's start with the statistics. In the last year, NHS Resolution (2023), the litigation wing of the NHS, paid out a total of £2.6bn for clinical negligence relating to maternity care. That is almost the same amount as the total overall maternity budget for NHS England (2022). Children who survive are awarded millions of pounds, whereas, when a child does not survive, the amount is limited.
The cost of settlement for survivors of clinical negligence is so high because these babies face a lifetime of expensive medical interventions. Josephine had bilateral hip surgery, spinal rods, an Intrathecal Baclofen pump (neurosurgery), a nasogastric tube and then, finally, jejunal feeding.
She was frequently in an ambulance on her way to the emergency department, often hospitalised and on many different kinds of medication. She had long-term physiotherapy, occupational and speech and language therapy. She wore special footwear, had numerous wheelchairs and received costly government benefits. The cost of her care post-18 alone was a significant sum.
As her parents, we had counselling over many years, often funded privately. And then there was the collateral damage, not included in the settlement – our son did not come through the experience unscathed.
We were not just involved with the medical profession. In drawing up a list of all the categories of professionals who were part of Josephine's life, I discovered that nearly 30 different professions were involved. It was a salutary exercise. Few of these interact with healthy humans.
‘When I stand at her grave now looking at her name, it is as though nothing occurred between the early form-filling and endless medical reports and her premature death. Hers was a life in paper. I never heard her voice and didn't know her opinions. I loved her endlessly and was in awe of her ability to withstand the pain and the suffering’.
Sheila Brill
Echoes of my case: the Ockenden report
On 10 May 1993, there was no space on the labour ward so, at term, I was admitted to the postnatal ward to be induced. I was 36 years old and had already lost two fetuses in early pregnancy. The first induction failed, so I was induced a second time. All this will ring alarm bells for anyone who has read the Ockenden (2022) report: ‘the review team also saw multiple cases where women who were considered high risk were admitted to the antenatal ward to commence an induction of labour when induction should have occurred (or it should at least have been considered) on the labour ward. Lack of senior review or awareness meant that care provision happened in the wrong place and often without full consideration of the clinical risks involved in the care provided’.
The registrar's misinterpretation of my cardiotocograph suggested the fetus was not in distress so no action was taken by medical staff. Ockenden (2022) wrote that ‘interpretation of the CTG must be according to the [National Institute for Health and Care Excellence] classification of foetal heart patterns’. The report recommended the use of standardised computerised cardiotocography for antenatal care. ‘Processes must be in place to be able to escalate cases of concern quickly for obstetric review and likewise this must be reflected in appropriate decision making. Local mandatory electronic fetal monitoring training must include sharing local incidences for learning across the multi-professional team’ (Ockenden, 2022).
‘It is certainly clear that the ward was understaffed at the time, which must have contributed to the poor standard of care’
In my case, there was no obstetric review, as my obstetrician forgot to come back to check on me. After my daughter's birth, she mentioned that the midwives may have been intimidated by me and my husband; that they gave us scant attention because we seemed to be managing the labour well. They were, apparently, accustomed to less articulate, more subservient patients than us.
It is certainly clear that the ward was understaffed at the time, which must have contributed to the poor standard of care. The delay in transferring me to the labour ward caused the outcome for our daughter to be very poor.
Echoes of my case: the Kirkup report
The Kirkup (2022) report panel listened to many families and found failures in four areas: teamworking, professionalism, compassion and listening. I can comment on three of these areas.
Compassion
The Nursing and Midwifery Council's (2018) first standard is ‘treat people with kindness, respect and compassion’. One example of a lack of kindness, care and understanding was placing women with other mothers and their newborn babies following the loss of their own baby or after a serious event. I was expected to stay on the postnatal ward where I had been in labour.
‘I could hear newborn babies crying further down the ward. It was like being stuck in some sort of time machine where I had gone forward in time and then back again. When I had arrived on the ward, I had heard babies crying, but I had tried to shut it out of my mind. Today, I was a mother and a woman opposite me was in labour. None of it made any sense’.
Sheila Brill
Listening
The Kirkup (2022) report quoted families ‘not being listened to or consulted’, ‘encountering a lack of kindness and compassion’ and women's concerns about the progress of their labour being dismissed. During my own experiences, I had similar experiences:
‘You're not in labour, Mrs Brill. Here's some temazepam’.
‘Why don't you have a bath? That will relax you’.
‘We're very busy, Mrs Brill. You'll have to wait’.
Professionalism
A lead midwife for education commented to me about midwives' communication with mothers-to-be: ‘other people don't need to know you're busy’. The Kirkup (2022) report talked about ‘a tendency for the Trust to fail to take responsibility for errors or to show accountability’.
In my case, to the best of my knowledge, none of the professionals involved in my daughter's birth were ever held to account for their mistakes.
The Kirkup (2022) report is clear about recognising and reporting honest clinical errors, which are described as ‘an inescapable accompaniment to practice everywhere.
‘We do not blame, or identify, those who have made honest clinical errors. Clinicians should not have to live in fear of clinical error and its aftermath; the fundamental point is to recognise and report error, so that it can be investigated and learned from. The route to improved maternity services would be fatally undermined if individuals, be they midwives or consultants, were deterred from reporting, or from entering practice, by the fear that honest clinical errors would result in public or professional vilification’.
Donna Ockenden (2022) wrote in her report that maternity services are seeing ‘significant pressures…in the recruitment and retention of midwives’. Recently, I was celebrating a friend's daughter's offer of a university place on a midwifery degree. I am sure that 18-year-old Sarah has the makings of a fine midwife. She is the future; the hope that this profession will flourish from its learning.
I asked Sarah if I could walk alongside her in her studies and maybe in her career. She knows my backstory. I am happy to say that she welcomed my request.
Sheila Brill's upcoming book, “Can I speak to Josephine please?” is a memoir that tells the story of her severely disabled daughter. The book is due to be published in March 2024.