Maria C follows up her story
A few years ago I wrote an article for AIMS about a maternity service complaint I was going through.1 It seems strange to me now that I chose not to name the Trust at the time. Perhaps I should have done because the Trust, University Hospital of Morecombe Bay NHS Foundation Trust (UHMB), is now regarded as a second Mid-Staffs after the recent damning findings of the Report into the Morecombe Bay Investigation.2
Whilst the principle focus of the report were the multiple catastrophic events at Furness General Hospital, the Trust's maternity services and how complaints were dealt with as a whole were investigated alongside external organisations alerted to the problems:
'This Report details a distressing chain of events that began with serious failures of clinical care in the maternity unit at Furness General Hospital, part of what became the University Hospitals of Morecambe Bay NHS Foundation Trust. The result was avoidable harm to mothers and babies, including tragic and unnecessary deaths. What followed was a pattern of failure to recognise the nature and severity of the problem, with, in some cases, denial that any problem existed, and a series of missed opportunities to intervene that involved almost every level of the NHS.'
I didn't name the Trust at the time, or the hospital, the Royal Lancaster Infirmary, because I wanted to make the point the same problems could happen wherever care systems fall apart. Perhaps I should have just named them as an example of a rare, systematic, dangerous incompetence on several levels? I said in my first article1 that in other threats to life police become involved but little did I know that I was dealing with a Trust that was actually to end up being subject to a police investigation.
I had endured five years of being told, through hundreds of emails, phone calls and letters of my complaint that my care had been normal, my life had not been put at risk and either way efforts were under way to improve their services. I could not reconcile this with my own experience of being left severely traumatised after going through what felt to me a near death experience whilst being refused help by several staff, countless times.
One of the prerequisites for the diagnosis of PTSD is that you have gone through a traumatic experience where you felt you (or a someone close to you) was going to die or suffer serious injury or you have closely witnessed trauma to someone else.3 Because I left the hospital with no explanation of what had happened to me and the Trust refused for years to admit anything had gone wrong it took years for me to get a diagnosis and treatment I had required. If I had been in a train crash I could have at least explained to people I had gone through a traumatic experience and the PTSD would have been picked up quickly. Being told nothing had happened to me was seriously damaging to me and shows how a duty of care is important after leaving hospital and through complaints procedures. It was only the growing realisation that I was suffering from long-term post traumatic stress disorder (PTSD) and my belief that despite the disregard for my life I had experienced in their care, that my life mattered to me, that kept me going for the five years of the complaint.
At first I spent almost two years trying to get a reply from the Trust, and experienced delays (caused by the Trust) in going through the Healthcare Commission and Health service Ombudsman (HSO) investigations for another three years. The HSO judged my care to be a case of 'service failure' and I finally got the evidence that my life had been in danger after losing half my blood volume in a massive obstetric haemorrhage and being left to cope with this unaided, refused even a glass of water, for a whole 24 hours. Only luck allowed me to survive that.
One of the reasons PTSD exists is because the brain fails to process a traumatic event into its normal memory so the trauma remains as if it is part of the present, so causing the effect of a broken record and constant triggers.3 The Trust's behaviour in dealing with my complaint caused years of delays in my recovery. First, by leaving the hospital with no explanation of how serious things had become delayed my understanding of why I felt so traumatised and ill for a long time after discharge. In the months that followed I was unable to return to work and ultimately lost my job and my career. It took a couple of years to qualify for the PTSD treatment because I needed to justify a near-death experience.
When I could get treatment it was the first stage of the recovery but was being aggravated by the volume of frustrating emails and phone calls about the complaint, which constantly triggered my symptoms. The second stage of the recovery was when I got my complaint upheld by the HSO and a letter of apology from the Trust. The third stage of my recovery was having time to put that behind me and put back the time I'd lost with my family and luckily was able to build a new career.
Now I have gone from being unable to enter the doors of a hospital without breaking down uncontrollably into tears and having a panic attack in public to only having my PTSD triggered if I need dental treatment or surgery. Even on gas and air dentists can't understand why my heart rate stays so high after prolonged exposure to the gas. Whilst being given a general anaesthetic for a minor operation, again with my heart being routinely monitored the surgeon couldn't understand why my heart was racing so much and I failed to explain why I was panicking about a past event and I wasn't scared of him per se. All in all I have felt symptom-free for a few years now although I am aware I am still vulnerable to a relapse and have had mini-relapses in response to some stressful events.
Although I am now able to tolerate minor medical procedures, my general trust in the NHS had been drastically affected. I developed a solid belief that NHS care in this country was no longer what I had grown up to believe it to be and whilst excellent care was still there I needed to be wary of substandard care. To me it was a realisation that the NHS had irreversibly changed. I couldn't explain why, whether it was due to budget cuts, changes in expectations of nursing roles, training, staffing levels, whatever. I had managed to get rid of the irrational fears caused by PTSD but remained cautiously wary of future care. I had survived a physical test on my survival and felt extremely lucky. The psychological effects of the trauma and the experience of the complaint had left me feeling my spirit had crushed to almost nothing and I am grateful that somehow I have managed to come back from that. That was no coincidence though as I was lucky to have help through the unfailing advocacy of the Independent Complaints Advocacy service (ICAS), GPs, councillors and supportive individuals in my new career, but most of all my family. I was truly blessed to have my youngest who was about four at the time, like a broken record constantly repeating 'I love you mummy' breaking through the numbness of the early days of trauma.
But the release of this report has added another level of healing and closure. It has helped me feel I shouldn't accept that the care I received in hospital, and throughout the complaint, is normal NHS and there are systems still there to make sure it is not tolerated or buried. Hearing it described as a 'second Mid-Staffs' makes total sense to me and allows me to believe it was as wrong as I felt it was and my fears weren't quite as irrational as I had been made to feel they were.
'Today, the name of Morecambe Bay has been added to a roll of dishonoured NHS names that stretches from Ely Hospital to Mid Staffordshire.'2
What I went through is absolutely and completely miniscule compared to those who have lost their beloved beautiful babies, wives and mothers at Furness General Hospital. On multiple occasions the five years of my complaint seemed to be a complete waste of time and just seemed to be more damaging to my health. It makes it worth it now to see my HSO investigation at least seemed to have contributed to the thousands of documents used in the investigation to understand what went wrong at Furness General Hospital.
But now it would be easy to shun and scandalise the Trust, and its many dedicated staff recognised in the investigation. Just like the Rotherham Child Abuse scandal, it is easy to be horrified at what has happened and think it is far removed from everything else. 'This Report sets out why that is and how it could have been avoided. It is vital that the lessons, now plain to see, are learnt and acted upon, not least by other Trusts, which must not believe that "it could not happen here". If those lessons are not acted upon, we are destined sooner or later to add again to the roll of names.'2
Indeed the report focuses on the errors of wider NHS services as well as the Trust. Despite the extremes of this case the same mistakes and cover-ups nobody, anywhere, can say 'it could not happen here'. The report recommendations should be read and taken extremely seriously by all maternity services, particularly this quote: 'To err is human, to cover up is unforgivable, and to fail to learn is inexcusable.'4 Sir Liam Donaldson quoted by Dr Bill Kirkup presenting the report.
Post-traumatic stress disorder (PTSD) is currently defined by the NHS as 'an anxiety disorder caused by very stressful, frightening or distressing events.' Thankfully it is now recognised that PTSD is not confined to near-death experiences, and also that women can experience trauma during childbirth. Those experiencing PTSD often re-live the event through nightmares and flashbacks, and can have feelings of isolation, irritability, guilt, problems sleeping or difficulty concentrating. Symptoms are often severe enough to have a significant impact on the person's day-to-day life. PTSD can be disabling, but fortunately treatment has a high success rate. If you think you are affected help is available.
AIMS supports all maternity service users to navigate the system as it exists, and campaigns for a system which truly meets the needs of all. AIMS does not give medical advice, but instead we focus on helping women to find the information that they need to make informed decisions about what is right for them, and support them to have their decisions respected by their health care providers. The AIMS Helpline volunteers will be happy to provide further information and support. Please email email@example.com or ring 0300 365 0663.
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