Knowing when to speak up is something I haven’t always found difficult, depending on the situation. Work wise? No problem, I work for the NHS in regulation and when something isn’t right I’m lucky enough to work in an environment that supports whistleblowing and quality improvement. In my personal life? Sometimes…But what I have found since Ollie died, is that I cannot shout loud enough about the things which are important to me, the main thing being my son and how my family were treated during our time in hospital.
Around 4 weeks after Ollie passed away when the fog started to clear a little I realised that how we were treated was not okay. I have accepted the outcome of my son’s life, he passed away at home with me, inside my tummy listening to his mums heartbeat, and to some extent that provides me with some comfort. But our experience when we arrived in hospital fell completely short of what is expected and our care was sub optimal. Without going into too much in detail, I was severely unwell and was told by a Consultant my life was in danger on numerous occasions but was left in a room at the wrong side of the labour ward, unattended for over 1 hour, in active labour, with no pain relief, at high risk of catastrophic haemorrhage and completely alone (my family were making arrangements and collecting my belongings) I was left in Maternity Assessment for 1.5 hours with active bleeding and told ‘you’ll have to wait’ before we were told Ollie had died, we were incorrectly told he was alive when he wasn’t. These are just some of the issues we encountered, but actually what it came down to was although Ollie’s death could not have been prevented, someone else’s babies may have been prevented, and that 1.5 hour wait and time unattended could have made a difference to someone’s life.
When I thought more about this I realised how troubling it was, but also how different it was from what I do for a living because this is lived experience. I have read numerous incident reports, inspection reports and Root Cause Analysis’s during my time but because this was so personal I didn’t want to address it. I didn’t want to relive it, I wanted to hide away and keep my mouth shut because the flashbacks of reliving that day was too much to bear. I felt I didn’t have the confidence to hold the trust to account for the complete lack of care we were provided with, that I didn’t want to challenge the Midwives and Executive team because I was just a small fish in a very big pond, what difference would I make?
But then I made a warm welcome to Anger (a stage of the grieving process) and all of a sudden I was angry, seething mad. I fired out an 8 point complaint letter to the trust complaints team faster than my fingers could even type and sent it off, before I could even really think about what I was doing. I know how these things work, someone reads it, it goes in a drawer, we get a sympathetic yet non admittal letter back 3 months later and things are forgotten, but I wasn’t going to accept that. I was Ollie’s voice because he couldn’t speak for himself, I was spared for a reason but that was by intervention from forces unknown, and not through the actions of the trust. So I wrote another letter, this time addressed to each and every one of the Executive team, including the Chief Executive, Head of Nursing, Chief Operating Officer…everyone got one, about our experience and telling Ollie’s story. I sent weekly emails to the complaints team asking for updates, I hounded the poor woman into the ground because I wanted answers.
The trust took notice, before the investigation was completed the Deputy Head of Midwifery and Quality and Executive Patient Safety Lead Midwife visited me at home to hear Ollie’s story first hand, in detail what happened to us, and how in the grand scheme I was lucky no further harm had occurred. And they actually listened…Our complaint was escalated to an Orange Level investigation panel as opposed to a formal complaint, they interviewed every staff member who even came into contact with me during our stay and conclusions were made that it was not acceptable and it wasn’t right, but that wasn’t enough for me. It’s always about the ‘So What?’ question, so yes they had admitted our care was sub standard but so what? What now?
I pushed, and requested evidence of these changes, impact of these changes, was there clinical engagement? Paperwork documenting this? Audits? Action plans? Pathways? Were the exec team on board? Was there funding available to sustain these changes over a long term period? SO WHAT?
4 months later we eventually got our answers, we met again with the team yesterday and as a result of speaking out:
Introduction of a completely new triage system in Maternity Assessment including a dedicated 24 hour triage midwife based solely on the telephone, a live patient assessment board categorised by risk/traffic light system on the wall for all clinicians, midwives and visitors to visibly see. This was implemented on 1st March.
Additional bereavement training for Midwives and Clinicians via SANDS and my families testimonies.
Stillbirth review panel engagement with patients (including me)
A structured learning and development plan for the Midwife involved in our care to ensure she learns from our experience and does not make the same mistake twice.
The introduction of a new escalation pathway and staffing ratio tool throughout all maternity wards.
Spot checks to be introduced on labour wards to ensure escalation policies are being used appropriately during busy periods.
Introduction of a new risk assessment tool in Maternity Assessment.
A designated memory garden in memory of all of the babies and mothers who lost their lives.
A new coffee machine donated by Reece and I for the bereavement suite (during my time there I couldn’t leave the room for fear of seeing or hearing babies, I would have loved a latte!)
Introduction of ‘Ollie Bobs Books’, a portable library with children’s books available for women in all maternity units to read stories to their babies.
Continued work with the trust to improve bereavement services.
I am so grateful that I was listened to and that Ollie’s voice has brought about positive change, whilst I was so angry with the trust (and still am) I want my son’s name to be associated with positivity and difference. When people are uncomfortable, that is when change happens and without my anger these changes may never have happened. Not all our experience was bad, our Consultant was outstanding and so was my care during labour. I suffered a PP haemorrhage and he saved my life, and treated my son with the dignity and respect that he deserved. I was sure to include the positives about our experience and sent gifts and cards to the staff who went above and beyond for us.
What I’m trying to say is don’t be afraid, if something was wrong say so, you have every right as a parent to protect your child’s memory and speak up if something is wrong. It doesn’t matter if it takes months, you have up to 1 year after the incident to make a formal complaint, keep going until you get the answers you want, it can make a huge difference. Alternatively if you choose not to or your experience is positive which most of the time they are, then your work is done just by surviving each day for your baby. Every baby counts and every single life matters, patients voices are incredibly powerful and are imperative when bringing about change.
Do not be under any illusion that this makes me feel better in any way, the pain is just as great, this is all for him. I do all of this to try to rid myself of the immense guilt that I feel every day, that keeps me awake every night, that my body failed him. I’m his mother and I will protect his legacy every day for the rest of my life and his name WILL be recognised. Because that’s all I have left to give him…..
Each life matters. Each baby matters. Each story matters. Each experience matters. Each voice matters. Every baby makes a difference on this world, every single life is meaningful and changes can happen as a result of every single baby.
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