The best apology is changed behaviour…

Those days after William died, the day when I kissed William’s soft skin and whispered in his ear ‘please tell them what happened my darling boy’, the days spent waiting, wondering, hoping they would find something, something that would tell us what had happened to our beautiful little boy. As I would sit staring out of the window ruminating about my little boys broken body being transported up-country on his own to be operated on in a procedure that should be reserved for adults only. Wondering if he was ok, wondering whether they would look after him, wondering how the pathologist found the strength to do that job. I was told it would take a while for the post-mortem results to come back but just five days later William was returned home, and we were given preliminary results. Something we hadn’t anticipated, after all ‘SIDS?’ had been mentioned on William’s medical record. Something I later found out. But I knew, I knew that William didn’t just die. I was right.

In those five days I had pulled my hair out strand by strand and scratched my skin until it bled, anxiety winning the most debilitating war, whilst I waited. Can you imagine being in a position where you beg God, where you hope, where you wish that your child died of something so rare that no-one could have spotted it, that the 382 glorious days we were blessed with were borrowed time, that William would have been taken anyway. Can you imagine feeling that way? Toying with the possibilities in your head and deciding on one that somehow you might find easier to live with. But no, William didn’t ‘just die’, he didn’t die from something so ultra rare that he was no longer suffering from, William died from something common, sepsis.

When the pediatrician came and sat on my sofa, my pleading eyes, begging her to tell me something I could make peace with, but she didn’t. She told me that William died from something that doctors should be looking out for. Not long after, I spoke to the pathologist himself, he told me that William’s little chest was full of viscous, purulent fluid. Why didn’t the doctor pick this up? The one who listened to William’s chest just before he died. The one who told us his chest was entirely clear.

From the moment William was taken from us, from 08:47am on the 14th December 2014, from the moment the paramedic uttered those words “I’m sorry my love, but he’s gone” the questioning began. A constant reel of questions on repeat. In my head I would answer a question, but then immediately pick apart the answer and start the process again. That hasn’t stopped, what I do know is how William died, but what I will never be able to answer is why? Why William? William was well looked after, and loved beyond comprehension. I will never know why those doctors involved in William’s care made mistakes, I will never know why we, as parents weren’t listened to.

Very soon after William died it was obvious that things had gone desperately wrong with his care. Within a few weeks it was already apparent that the process after a child dies had flaws that are simply unacceptable. We were left to approach the doctor – the same doctor who had let William down – for help. Can someone help us? Is there someone I can talk to? Appointments that required us to dress, drive miles to the doctors, and sit in the very room where William was sent home rather than being referred to the hospital, and take advice from the very doctor who had examined William. We were offered 6 sessions of counselling. SIX. Of course it wouldn’t start tomorrow it would be at the earliest, next week. As I sat down for session number one, I was reminded that this would be the first of six sessions that lasted approximately 50 minutes. At this point I knew I was on my own.

We had what is called a ‘rapid response practitioner’ someone who you can liaise with. Someone who would tell you what was happening, what would happen next and what to expect. Any bereaved parent will tell you, this is virtually impossible, the waiting is excruciating. The not knowing is equally as painful as knowing, but the parental instincts inside me told me I had to know. So the journey begun. The journey of looking at William’s death objectively.

I’m not really sure what people think, those looking in, those not immediately involved with William, or indeed following our story about what it takes, but it is not a case of filling in a complaint form and sending it off to the NHS. I’ve not written a blog for a while. Mostly because once I sit down, I just want to be left alone with my own thoughts, not because I’m feeling better, I’m not. You see, what I’ve had to endure these last 520 days are something I do not wish upon my worst enemy. I have lost count of the meetings I have attended, conference calls I’ve dialled in to, I lost count of the emails I sent at around the 600 mark, the departments I’ve had to phone, chase, follow-up, push, and persist for them to do what they are supposed to do without me asking, the doctor’s surgery, SERCO, South Western Ambulance Service CEO, the Kernow Clinical Commissioning Group MD, the Child Death Overview Panel, the Coroner’s office, the pathologist, numerous pediatrician’s, rapid response practitioner’s, NHS England South, NHS South South West and that is not an exhaustive list; and that is before the inquest even begun in June 2015.

After the inquest, when the actual investigations into Williams death started was when the real journey started. I don’t think anybody really knows exactly what it has taken, just Paul. I have read through the transcript of the telephone calls I made to the health professionals in the days leading up to William’s death, I heard his little voice in the recordings, I’ve listened to the 999 call I made when William died, I’ve read and re-read William’s medical records and the witness statements, I have lost count of the amount of times I’ve printed and annotated William’s post-mortem report, I have analysed NICE guidelines, the British Medical Journals and I won’t even list the different Royal College guidelines, I have contacted and spoken to many highly respected medical consultants in microbiology, thoracic, cardiology, infectious diseases, pediatrics, and pathologists, oh and the genetics team. I have studied case-law and how this is applied to medico-legal reports. I have studied and learned medical terminology and what it means and how it is applied. I have liaised with the NHS 111 pathways team including the director, the Director of patient Safety for hospitals at the CQC, I have seen, used and experienced the algorithms used by NHS pathways, I have had to deal with the Judicial Conduct Investigations Office, the council and of course NHS England, I won’t continue.

What is the purpose of me telling you some of what is involved? I’m telling you this because when I set out to get William the justice he deserves I wanted to do one thing, and one thing only. I wanted to make sure that those involved in William’s care understood that my son’s life, William’s life is more important than any system. That despite the fact he couldn’t talk, his voice mattered and still does, and as William’s mum it was my job to ensure that his voice was heard. After 520 days we have finally received a full written apology from NHS England on behalf of those organisations involved in William’s care. We have had apologies from each party involved, and of course from the Government. I am exhausted, I am weak, I didn’t have any strength to begin with and I certainly don’t have any now, I am physically and emotionally spent. I have fought so damn hard, and although you might think I have succeeded, I don’t win anything, there is no reward, William doesn’t come back, he is still gone, and I am still left wondering why.

“The RCA panel / team are indebted to William’s parents for their persistence in ensuring that all of the facts were understood and that lessons would be learnt, and for their understanding approach in the context of devastating circumstances for them. The parents of William do want an apology from the parties and organisations concerned. SWASFT has already issued a formal apology to them. NHS England will give an overall apology to them on behalf of all the NHS organisations involved. The OOH doctor formally recorded his apology at the inquest. One of the GP’s from the practice has communicated in writing an apology to the parents and a private meeting between this GP and mum has also taken place…a final conclusion…the panel have concluded that if William’s parents had not been involved as openly and fully…the full extent of the contributory factors and learning would not have been identified…I want to offer this as a written apology on behalf of all of the NHS organisations involved in William’s care.”

Never underestimate the power that a mother’s love has. This is all driven by love, by William, by my darling little Grumpus.


www.justgiving.com/williamoscarmead

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Closure, what is that?

“Closure” – noun

  • a feeling that an emotional or traumatic experience has been resolved.

Amongst other more trivial definitions, this is the word that is commonly used when a non-bereaved person has no idea what to say to you. At least after the funeral you might get some closure, when the inquest has finished it should give you some closure, when you have received an apology from those that failed your son, you will get some closure. Erm, no. As it says above, closure refers to the resolution of an emotional or traumatic experience. Losing a child, losing William will always leave a gaping chasm in my life that can never be resolved, fixed or even emotionally explained away. The only way to resolve my profound hurt, is for William to be alive.

The last few weeks have been a real whirlwind, what you have seen in the news, the news papers, on the internet is a representation of the way my mind is bubbling all the time. It is everything that I have been hoarding in my brain for the last 14 months, and only a small proportion of it came out in one day. It was emotionally charged and overwhelming, something that I knew I had to do. A double-edged sword. I didn’t want to be there, but I did. I didn’t want to see William’s beautiful smiling face on the TV, but I did. The most unusual bittersweet sense of pride one can feel. I didn’t want to talk about what happened to William, there’s no getting round it, and having to revisit the most traumatic day and subsequent days of my life on repeat was a difficult task to endure. But it was a sacrifice. A sacrifice I made to see my pint-sized William make a difference. And what a difference he made.

As I sit here now, finally able to sit and write, the emotions that inhibit my body, from the pit of my stomach, the waves roll through my chest, my jaw clenches as the tears flow. I have barely cried these last few weeks, well, that’s not entirely the truth, I cry everyday, I cry in the morning, some days I am already crying when I wake up. I cry in the shower, in the car, at my desk whilst writing a memo. But, I haven’t cried so loud in the shower when no-one can hear me, I haven’t cried so hard I couldn’t focus and had to stop the car. I haven’t allowed my body to let go, to heave and purge the compressed tension that sits in my soul. Initially after the media frenzy I was simply so exhausted I would just sit and stare, and then I got scared, so scared that I held it in, knowing that when it came I would not be able to control it.

But today was that day, today I opened an attachment on an email, ‘re: William Oscar Mead, Deceased’, deceased. My son is deceased. My son, my only child, my everything is dead. It is so very easy to somehow objectify your actions, to travel to London, to go on the television and talk about the failings in William’s care, so easy to talk about what needs to happen, what needs to change, to educate people and help to raise awareness of sepsis. But I did that, because my little William knows what it’s like to die, my son shouldn’t know that, and no matter how much positivity you harness, how much you empower parents, and how much awareness you raise of the catastrophic condition that took our little boys life, William is still not here. We still came back to an empty home, no mess, no toys strewn on the floor, no laughter and contagious smiles. Nothing. No William.

You get to a point, and I’m at that point where people don’t approach you with caution, people no longer ask you how you are, with a sympathetic look, worried for the answer they’ll receive. No, now, there is an expectation that when people see you that you are okay. They will ask you how your weekend was, they will engage you in conversation, or as I like to put it, small talk. My tolerance levels are no better than they were six months ago. My tolerance levels are worse, I have just become a seasoned pro at wearing the mask. When you ask me how my weekend was, it was shit. Just like every other weekend. It was shit because on Friday after work I didn’t pick William up from nursery, I didn’t flop onto the sofa with a glass of wine when William had finally succumbed to sleep. It was shit because my weekend didn’t involve trips to the park, 25 loads of washing, chasing round after a cheeky two-year old, packing him into the car with ‘plans’. I will tell you it was ‘okay’, because I can no longer be bothered to explain, people no longer really want to hear it, people are busy with their own lives, people’s lives have moved on, albeit tinged with sadness but nonetheless, their lives have evolved.

My mental health has not moved on, it has not evolved. I am no longer preparing for an inquest, I am no longer bracing myself for the next version of the NHSE report, no, I know what happened to William, although I’ve known for months, however, it is not something that I felt able or inclined to speak about publicly. We’ve had every apology we can possibly have, the doctors involved in the failings in William’s care have apologised, face to face, last week. South Western Ambulance Service (111) apologised last year. NHSE have apologised, and now Jeremy Hunt, Secretary of State for Health, stood in Parliament and apologised on behalf of the NHS and the Government (see video below). But, where is William? It doesn’t bring my little boy back, it doesn’t take away the suffering he endured in those last few months, and in those last 36 hours, it doesn’t take away the guilt I feel, the blame I impose on myself, probably a form of self-harm. Control perhaps. I know it’s not my fault, I did everything I could, I sought help, I listened, I followed advice, I didn’t know what sepsis was, I didn’t know that William’s symptoms were life-threatening. But regardless it was me who took him to the people who failed my son, me. The one person that has ultimate responsibility for my son, he trusted me to protect him, trusted me to make the right decisions for him, he trusted me with his life, and as his mother I wasn’t able to do it. I was let down, let down by people and systems that are designed and are in place to help people, but until I take my last breath, the buck stops with me. No amount of changes, recommendations, lives saved, and sorry’s will ever stop me feeling that.

If you’ve ever faced a tragedy and someone tells you in any way, shape or form that your tragedy was meant to be, that it happened for a reason, that it will make you a better person, or that somehow when responsibility is taken for it, it will fix it. They are lying. Grief in all it’s forms is brutally painful. People encounter grief in many ways, when relationships fall apart, you grieve. When dreams die, you grieve. When illnesses destroy you, you grieve. These are words that I’ve uttered countless times; words that are powerful and honest they remove the foundations of anyone participating in the debasing of the grieving. Some things in life cannot be fixed. They can only be carried.

This video is the link to the apology William received in Parliament, if you would like to watch.

http://videoplayback.parliamentlive.tv/Player/Index/563715bb-a8f2-41fe-9f36-642d670ed991?in=2016-01-26T12%3A37%3A45%2B00%3A00&out=2016-01-26T13%3A15%3A00%2B00%3A00&audioOnly=False&autoStart=False&statsEnabled=True



www.justgiving.com/williamoscarmead