The true reality of sepsis

Your last journey xx

Your last journey xx

Dear William,

844 days. Today is 844 days since you were taken and 824 since your last journey. A journey mummy and daddy took with you. Mummy wouldn’t let you go on your own so she asked for a hearse that we could travel with you. I remember sitting in your room, looking at the very spot you were last alive, and out the window I could see you coming. I shouted “William’s here”, the last time I would ever shout that, I ran down the stairs, opened the front door and watched as you were driven past. The hearse dwarfed your little coffin. Coffin’s should never be made that small. You shouldn’t be in one. Life is so unfair.

Your coffin surrounded by beautiful flowers spelling out your name, and your nickname ‘Grumpus’. There was a little pillow too, and sat proudly with you on your coffin was a little reindeer made out of flowers to match your favourite teddy and two red roses from mummy and daddy. To see your name in flowers took the breath right out of me. Your name should be in lights, not flowers. It didn’t look right, how could it ever look right? You were so small. As I stood there trying to take it all in, I couldn’t, that was you in there. My baby, My beautiful little William, gone, never to walk up the steps to the front door, never to learn how to ride a bike on this very road where I was stood. At this moment I had no recollection of anything else around me, only total awareness of you. Knowing I couldn’t touch you ever again, knowing you were in that little coffin and I couldn’t see you.

Grumpus xx

Grumpus xx

Mummy rested her hand on your coffin for the longest journey of our lives. The hand that fed you, played with your hair and soothed you when you were upset. Now all I could do was place my hand on your coffin. People were looking as we drove past. I could see the injustice written all over their faces. Their mouths forming an ‘O’ as their jaws dropped, shocked, no coffin should ever be that small, 30 inches to be exact. As we pulled up mummy climbed out and stood there, preparing to carry you for the last time. We carried you in to your own funeral to the words of Gordon Garner’s, Heaven Got Another Angel the words resonating through my body.

Mummy had asked for two seats to be placed right next to you, so that you knew we were right there, right there with you for as long as we possibly could be. Mummy placed your little photo by your coffin so I could see you, but I knew, I knew that I was inches away from you. Some of the thousands of photo’s we have of you played on a big screen. Everyone knew what a happy, gorgeous little boy you were. It was heartbreaking sitting there knowing that there would be no more moments in time making memories like in those photos. Mummy would never get to see you running, mummy would never get to take your hand and help you cross the road, mummy would never hear you speak, she would never hear the 4 words she had yearned to hear from the moment she knew you were coming, “Mummy, I love you”.

Mummy stood and read for you. As I stood there the only presence I could feel was you, only you were in that room. I have no idea how I managed to do that, but I had to, I had to do it for you. Mummy would do anything for you, it was the very least I could do, to be able to stand there and make sure you knew how much we love you. Did you hear mummy reading, I hope so.

And then it was time for the curtains to close. This was it. Mummy would never see you again. You were gone. Mummy was gone. In that moment I knew, I knew that the life had been completely sucked out of me. My heart and soul is with you Grumpus, I know it is in safe hands xxxx

I wanted to write this post because it is impossible for you unless you have had to say goodbye to your child to understand the depth of pain I am experiencing. Time doesn’t heal you know. I will never suddenly wake up one day and think ‘oh, I feel better today’. It doesn’t happen. I miss William today, I’ll miss William tomorrow and I’ll miss William until the day that I no longer wake up. Will the pain of being so far away from him lessen? no, it won’t. If I asked you which one of your children you could give up? Would you feel any better after 1 week, 1 month, 1 year, 10 years.

Society does tend to put you into a category, for the first year people look at you with sympathy. But as you advance into the second people have a certain expectation that you are ‘ok’. By and large I am ‘ok’. But what is my ‘ok’ is, and what is your ‘ok’ is, are very different. I’m aware, tolerant even, of the fact that people don’t understand, and I’m thankful that they don’t, that as days drift into weeks, months and years, we bury William every day. We are expert at wearing the mask. We can hold conversation, we can smile and laugh, and sometimes, especially with Arthur we are genuinely happy. But, William is still missing, William will always be missing. Although time gives us the ability to practice, practice being ‘normal’. Be under no illusion that there is not one single day that we don’t cry, that we don’t wake up longing for him. Simply, I miss him with every breath I take. My arms yearn to hold him, to feel the weight of his beautiful little being, to hold him close to me. To watch the gentle rise and fall of his chest as I watch him sleep. To be able to reach out and physically touch him, for real, and not just in my dreams.

Sepsis did this.

Sepsis, the ‘silent killer’. Sepsis sapped the energy from my life and plunged me into a place of silence. Sepsis may be silent when it creeps in to your life, unsuspecting, indiscriminate, and all-consuming but the silence to follow is deafening. William’s life was silenced, silenced forever. There will be no babbling, no first words, no ‘mummy, I love you’s’, no more crying or laughter. The silence that sepsis forces into your life is the most powerful scream. A guttural, earth shattering, animalistic cry that no one can hear, just you, in your head.

You see I didn’t know what sepsis was, it seems hard to look back now and believe, truly be able to tell myself that I didn’t know what sepsis was, now I seem to be equipped, chapter and verse on one of the UK’s biggest killers. How did I let my little boy down? Why didn’t I know? I should have known. But I didn’t. You can’t sugarcoat the truth that there are millions of you out there who don’t know about sepsis. You can’t sugarcoat the truth that without the knowledge you’ll be able to do anything about it. Simply put, today, there will be other families torn apart by something they didn’t know about. Families who will question their thoughts and actions for a lifetime, not being able to do anything about it, not being able to control it and forever wondering why they didn’t know. And forever feeling, despite people’s protestations, that somehow it’s their fault.

When William died, I didn’t know what to do with myself. I didn’t have a little human to pick up, to play with or cuddle. Every day I would thank God for William’s life. Every day I would hold William close and thank him for picking me to be his mummy. Thank him for giving me perspective, thank him for giving me love and thank him for giving me life. A life lived with no boundaries, that is limitless and endless. William taught me to be free. William gave me this without ever speaking a word. Sometimes there are no words for depth of feeling, emotion or reason. Sometimes life can only be conveyed with actions. When William died, I lost my window to freedom, I lost my boy, I lost a part of my life. How was I supposed to love, what was I supposed to do with this fire in my chest? Today I have the answer for that. The answer to that question is ‘this’. This is what I’m doing with that fire in my chest, the love with no place to go. I’m giving it to you.

I don’t know why or what I expected by sharing William with you. What I expected from talking so publicly about his life but also his death. It is painful, why did I do it and why do I still do it. I didn’t set out purposely to help anyone, I shared William because I needed to rescue myself, rescue myself from this silence. I needed to shout, I needed to share, and I still needed to love my little boy. I still need to be his mummy. So, very selfishly I started talking and a world opened up. A world in which I was still able to be William’s mum. I do wonder every day how many parents there are out there whose children have been silenced by sepsis, and how many children, children who’ve lost their precious mummy or daddy. How has sepsis changed their voice? Irreparably I imagine.

Did you know that this week alone a whole classroom of children will be silenced. The largest passenger plane, carrying 840 adults, will be wiped out, just this week. Knowing this really hurts, knowing that some of these people are in the position I was in on the 13th December 2014, a position of ignorance. Not knowing what nightmare is entering their lives. The UK Sepsis Trust desperately want to launch a national public awareness campaign for sepsis, and I desperately want them to as well. Did you know that with this campaign, with better knowledge 14,000 people could be saved? William could have been saved.

I have pondered over whether to show you this photo, this was taken a couple of hours after William had passed away, but he is still my little boy and this is part of our lives. This is what grief really looks like. This is what sepsis does.

The true face of grief xx

The true face of grief xx


www.justgiving.com/sepsisunited

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Christmas will never be the same…

Today is a sad day, every day is a sad day, but this time two years ago we announced when William’s funeral would be. Instead of uploading hundreds of photos that all seemed to look identical, William covered in paper and sellotape, playing with the boxes that the toys came in, instead we were inviting people to his funeral.

Christmas, a time of year that over the centuries has evolved from its very religious beginnings, now a commercialised time of year, that we all use as an excuse to down tools and spend time with our loved ones. Who can blame you? No-one needs an excuse to see that joy on their little ones faces, that excitement of knowing Father Christmas is coming, writing a letter to Santa, leaving a mince-pie, carrot and a tipple for Santa on Christmas Eve, visiting any number of events laid on by local attractions for our children to sit on Santa’s knee, and finally that sound of tiny stomping feet and squeals of glee, when they discover Santa has been, a stocking brimming full of toys that will be played with once, a tree that is barely recognisable under the weight of all the gifts.

We have none of that for William. We will never have any of that, not with William. William didn’t get to learn about Father Christmas, William didn’t get to star in his first nativity, William didn’t get to write a letter to Santa, he did sit on Santa’s knee, his bear containing William’s ashes gripped tightly by Santa, but that isn’t what we imagined would be the first time William would sit on Santa’s knee. We didn’t get to track Santa’s sleigh as he visited those in the Far East before he made it to the UK, we didn’t get to buy him a personalised book from Santa. On Christmas morning we awoke to silence, no little feet stomping down the corridor, no squealing, no excited little face, no ‘mummy, daddy, he’s been’. No William.

Our floor was clear of wrapping paper, we didn’t have an obstacle course of toys littered around the house. We didn’t have a little boy to give his first brussel sprout too. We didn’t get to show him a cracker, he didn’t get to wear a party hat or a cute little outfit. We didn’t have the struggle to put him to bed, too high on the simplicity of playing with his toys. We didn’t get to pack him and 500 toys into the car to visit family and friends, where his beautiful smile would make anyone’s Christmas. No, we had nothing.

Last year we went away, we went to stay somewhere completely unfamiliar, needing to get away from the suffocation of William’s absence in our home. But, regardless of where we were, the crushing pain packed itself in our suitcase and followed us. My heart hurts, it physically hurts in my chest, it doesn’t go away when I breathe in or out, whether I lie down or stand up, whether I have a glass of wine or not. My chest is crushed, my heart aching, aching to hold my little boy on Christmas. Two years ago at Christmas William’s fragile and broken body was still with us. I held him for several hours twice on Christmas day. I cried over his beautiful presence, I held him so close, I feared I might squash him. This year, we didn’t even have that. We will never have that again.There are very few that will understand this pain.

Paul and I stayed in a beautiful hideaway in Dartmoor National Park, there were families with children there, but we spoke to lots of couples who like us were ‘hiding’. Christmas not a happy time for them either. Some vastly wealthy couples, but grief does not discriminate, a loss of both parents recently meant one couple needed to be somewhere unfamiliar. At Christmas dinner, we had William’s teddy in a high chair, the chap on the next table ordered his parents favourite wine. Simple things, that somehow bring us closer to those loved ones we so desperately pine for. We met a U.S district judge, a man with a very powerful and influential position in society, reduced to tears by William’s story. For some Christmas isn’t a time of joy or craziness, it has become a time of painful reflection. A time that you look at your watch and hope that another hour has passed.

Every painful aspect a reminder of what should be, William would have loved the Christmas tress in every room, William would have loved splashing in the muddy puddles in his wellies, William would have loved the array of treats littered around the castle to keep the kids entertained, William would have loved afternoon tea, bitesize little sandwiches, perfect for his dinky little fingers, William would have loved to have found the stocking hanging on our door on Christmas morning, William would have loved to decorate the Christmas tree in our room, William would have loved the table magician, William would have loved the owl that sat on the reception desk, William would have loved watching the hunt as the horses and hounds made their way off the estate, William would have loved to sit in front of the grand fire by the most extravagant Christmas tree waiting for Father Christmas to call his name out to go and collect his present, William would have loved to watch the ferret racing, William would have loved the playbarn, William would have loved everything, but William was robbed of all of those things and we were robbed of William. All I want for Christmas is my son. Just one second, just one cuddle, just one stroke of those chubby little cheeks, just one look at that infectious smile, just one smell, just one touch. Just William. This is a wish that will never be answered.

I have felt nothing but guilt, my whole body consumed by Williams last few hours, what must my boy have been feeling, what did he want to say but couldn’t, what sort of mother am I to listen to what I was told to do, what sort of mother am I to listen to people who had no idea what they were doing, not just one person but multiple people, not just once but multiple times. The one thing I wanted to do and prided myself on was protecting my little boy, knowing that no-one could ever protect him and love him like I do. But sepsis does not discriminate, William was not unlucky, William was let down in the most unimaginable way possible. They have taken away our Christmas, our birthdays, every day, our life, our William. No manner of apology or putting right what went wrong will change anything, nothing will bring William back. Nothing can make Christmas bearable. Nothing can take away the fear, the anxiety and the guilt that any mother would feel for not somehow saving her child.

During midnight mass in the local church, William’s teddy was wrapped in my embrace, I struggled to make it through the service, the tears came rolling down my cheeks, choking on the tears, the words the heart cannot speak. As I stood, I went to the vicar and I asked him to please pray with me. He held me and William, and he prayed that his little soul would be in peace and to bless his beautiful soul. He also prayed for me, William’s mummy, to find comfort. I am yet to find any. I know that day will come, I know that day will be when I get to join my son again. In a place where there are no hours, days or years, where it is eternity. Where there is peace from this suffering, where I know that I will never be separated from my darling little boy again. A place where the first thing I will do is find my son, and the second will be to never let him go again. On that day, and that day only I will find peace.

This year, this Christmas we are blessed with William’s brother, Arthur. Something I could never have imagined two years ago, or last year. Something, sometimes I still struggle to comprehend. How can I be so lucky, lucky to have two beautiful children, but for this to be entwined with such pain and loss. As I drink in every movement Arthur makes I am crippled by the movements that William will never make. It is like living in a parallel universe, for every simply euphoric moment with Arthur I am reminded and crushed by the moments that I will never have with William. I feel as though every moment I live I am lost and once again found.

Life doesn’t get easier. Christmas doesn’t get better, torn between love and loss. But what these last two years have taught me is that life is so unbelievably fragile. Life is not promised. We are but one breath, one heart beat from it being over. Savour every moment, every breath, be thankful when you open your eyes in the morning and hug your children close. Make your memories today. Love today. Live today. I will never take one single second with Arthur for granted.

William, wherever you are my darling little boy. For every step I take on Earth, it is one step closer to you. One day we will be forever. Until then, all of my love is being sent to you this Christmas. It is one less that we have to spend without each other.

You would be incredibly proud of your amazing little brother. And for every waking moment, everyday is Christmas day, every day brings with it your greatest gift to daddy and I, Arthur. There is no greater gift, than life itself, and mummy cannot articulate how proud she is of you for giving your life to save others. And mummy wants to say thank you. Thank you for giving me Arthur, thank you for saving my life, and thank you for making me the person that I am today. Without you, I would be a shadow. You have bought me into the light and through Arthur you have once again given me light.

I love you, x


www.justgiving.com/williamoscarmead

What do I think about the NHS?

In the immediate aftermath of losing William before we really understood the true consequences of how and why he died, I searched everywhere for the answers. When I received William’s post-mortem report a paediatrician came to visit me to explain the content. At best this was a summary – it didn’t really tell me what I wanted to know. I wanted to know how the pneumonia had taken hold, I wanted to know how long the abscess had been in William’s lung and which lobe it was in and how this might have affected his airway. I wanted to know the thickness of the fluid that had engulfed his tiny little chest. I wanted to know the strain of bacteria found in his lungs, ears, chest and blood. I wanted to know how that strain of bacteria affected his organs. I wanted to understand. I didn’t want to be placated with answers that were formed in such a way that they caused less hurt. Tasked with a job that no one would envy, what those who were in direct contact with me didn’t realise is that there is nothing you, or any report could ever say that could ever lessen the hurt. Carefully constructed sentences, they don’t work. Summarised reports, also don’t work. They do nothing to satisfy my desire to truly understand. It is not as though I have just taken my pet to the vets and a simple explanation regarding their illness will suffice. My child died; but one thing that must be understood is that bereaved parents do not need to be spoken to in a way that you might explain something to a child. Subsequently I called and spoke to the pathologist; it was my only choice. Did I want to speak to the man who had handled my child’s body in such a cold and brutal task; no. But regardless, he had seen William, he had understood, he was the man who was able to extract all the answers I needed.

When William died at home, we were taken to hospital by ambulance. An ambulance that had blocked our one car road. Traffic was queueing, but the paramedics didn’t move their ambulance. They did not rush us. They went at our pace. They allowed me to carry my baby in my arms out of his home for what would be the last time. As we reached the road, faces of the waiting motorists said it all. A subtle head shake as they bowed their heads in respect. The paramedic sat in the ambulance and cried with me. A man, a father, a real person, how did he feel? The worst, most tragic part of his job. When we arrived at hospital they waited until I was ready to carry my baby into resus. They stayed with us until we were ready for them to go. We weren’t a ‘job’ to them. William was carefully cradled by them, and treated with the dignity he deserved. Their demeanour our only solace of feeling secure in a situation that had completely shattered our world. They allowed me the space to lay next to William on his nursery floor and scream, beg and plead with him to wake up, knowing full well that he never would. They were human. They cared and their compassion will never be forgotten.

The process, which is the only word that can be used to describe what happens after a child dies is distant, impersonal and one that does not fill you with reassurance.

Once the initial ‘buzz’ has faded and you are left with nothing but a post-mortem report that explains how your child’s world ended is the time when the most support is needed. Simply put, you don’t get it, not unless you come to the attention of the mental health team – which I did. It shouldn’t take an attempt on a life to get the help you need. Losing William isn’t a one time event that slowly gets better over time. Every day deals another blow. Another day when the sun rises but no hope comes with it. It doesn’t get better with time, in time I suppose you just somehow live with ‘it’. You don’t learn how to live with it. You just ‘do’. What other choice do I have? For me, I wasn’t satisfied. I knew that William shouldn’t have died – his post-mortem confirmed that. But I would now have to wait another 5 months before the inquest would take place. 5 months. 5 months is a long time in an average life but not in the life of someone who counts every day, hour, minute and second, each of which plays out like an eternity. I couldn’t wait, and I wouldn’t wait. So my journey of investigation started.

I started by familiarising myself with NICE guidelines, which further progressed onto the British Medical Journals – which I had to pay for. I researched studies that took me around the globe and spoke to specialists from all walks of life. But I begun by weeding out the direct contact details of the leading paediatric respiratory specialist in the UK. Everything had to be dealt with objectively; this was the hardest part – I mean how do you stop writing, talking and generally acting in a way where you’re not falling apart. I still don’t have the answer to that. Everything had to be neutral, unbiased, constructive and without blame. I wanted the truth not a played down version to somehow make me feel ‘better’, I knew I would never feel better. When the responses from the specialists started arriving in my inbox or answer phone the story became alarmingly obvious, startlingly clear and horrifyingly obvious – William should never have died. Most importantly I spoke to paediatric respiratory, microbiology and sepsis specialists. Consultants that have spent years working in one specific area. Not a generalised approach. As the inquest approached I had the facts I had sought. In the meantime the doctor’s surgery who had ‘treated’ William had opened and closed a Serious Event Audit. Which we hadn’t been informed of until we were sat in the inquest. How can the general practitioners have a meeting and close an audit when they have not even discussed William’s care and concerns with us, his parents? I would find it very interesting to see the results of their initial SEA, which was closed after no failings were found, to compare that to the NHS England report that later detailed failing after failing. When I first heard news that a SEA had taken place but I’d heard nothing about it, I really sat down to think how I would approach this. Because clearly if I rolled over and took everything at face value I would get the duty of candour but I wouldn’t have answers.

Who, what, when and where is the easiest way to explain an inquest. Who died? What did they die of? When and where did they die. To assist with answering these questions they bring in a paediatrician. Not a specialised one, a general one. So, immediately I was concerned. How can a general paediatrician who has no experience of empyema and pleural effusions confidently ascertain and answer questions in relation to William’s death. Simply put – he couldn’t. An expert in his field, but an expert in the areas that contributed to William’s death he was not. He was able to conclude that had William had different treatment to what he received it was highly likely that William would have survived. That was all we needed for an NHS England investigation to be opened. Unless you bring your own specialists at your own cost, you get what you’re given. The paediatrician that we had come to Cornwall 3/4 times a year for a day. That’s how many days they allow for inquests into baby’s deaths in Cornwall. We were allotted 2 hours for William’s inquest – it lasted 8. How the family’s waiting behind us felt I will never know.

With my knowledge about how investigations are handled I suspected it wouldn’t be an easy ride – it wasn’t. However, throughout the investigation I was involved in every step. Perhaps because I was a constructive nuisance, I was persistent, and I wouldn’t accept answers that I felt were flawed or were not relied upon with justifiable evidence. Eventually after several hundred emails, multiple drafts of the report, and numerous meetings, the report was finalised in January – a report that I was satisfied with and reflected the truth accurately. A report that highlighted multiple failings in William’s care, from each GP we spoke to, the 111 help line and out of hours doctors. Ultimately if William’s chest infection had been diagnosed appropriately and not as a viral infection – he would have received much-needed antibiotics. If that chest infection had been treated the progression of pneumonia would not have happened, leading to a pleural effusion, lung abscess and the sepsis that would take his life.

I have lost count of the number of times I have been asked to point the finger, or blame, or speak in a manner that puts the spotlight on certain people involved. I have no desire to do that. Those involved have apologised, face to face and they have been held accountable for their mistakes – after all – unless they were living in a cave during the first part of this year, it was a bit hard to miss the media. I have met face to face with the GP that last saw William for what would be the last time, the doctor that should have sent William to hospital. I have looked in his eyes and told him how Paul and I feel. I have been asked if I will take our complaint to the GMC, phrases such as “shouldn’t he be struck off?” For me, to take such action, would be to prevent him from potentially saving another life. Those that went into work each time they saw William didn’t act in a malicious way, they didn’t allow William to die on purpose. They are aware of their mistakes and the systems that allowed for those mistakes to take place are being changed. I hope that those involved in William’s care will not make those same mistakes again. Their index of suspicion has changed, their threshold for prescribing antibiotics has lowered especially when it is clinically evident they are required. Their awareness of sepsis has been refreshed in the most devastating circumstances. I do not want my life to be consumed by hate, anger, and regret. To seek revenge on those involved would not honour William’s memory in the way that he deserves; and it would not bring William back – and that is all I want.

There are faults that lie within the NHS – some of which I have encountered. Those of which I have I’m sure, I could think of a better way they could operate. I’m sure many of them could be rectified with an endless pit of money – which the NHS simply does not have. But the NHS is built on foundations of compassion by those who go to work to do good, to do their best to help a patient to feel better, make their lives easier and with dignity. There are some of course who do not, there are always bad pennies, but thankfully they are far and few between. I have had my own negative experiences with my own treatment and miss-diagnosis in the past. But if it wasn’t for the NHS I wouldn’t be here – twice my life has been saved. If it wasn’t for the NHS, William wouldn’t have been born. The NHS did not cause my son to die – decisions of specific people did.


 An eBook of 50 illustrations donated by 50 world class illustrators has been created in William’s memory. The book includes a foreword by me and Ron Daniels CEO of the UK Sepsis Trust. There is also a little game that you have to find William painting within the book. The book costs no more than £1.49 with all proceeds being donated to the UK Sepsis Trust in William’s memory. Please support us and buy your copy here.

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Williams Just Giving Page

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

An open letter to Jeremy…

Do you know what it’s like, what it’s like to lose your child, the one person that is dependent on you, and for whom your existence depends on? Do you know what it feels like to wake wondering if by the end of the day the burden of emotions will weigh lighter, not just on your shoulders but on your soul? Do you know what it feels like to know that you will never feel ‘normal’ again? Do you know what it feels like to know that for every step you take, you will never again be complete? The most important piece of my jigsaw, forever missing.

Do you know how hard it is to love someone so fiercely, but to know that love can never be expressed to that person? Do you know what it’s like to be able to look at your children, see their smile, hear their laugh and sooth their tears, I don’t. Do you know what it’s like knowing your child only exists in your memory? Do you know it’s those memories that ensure I lay frozen in the same position, fear, flashbacks and nightmares making you re-live that moment, the moment you tried so hard pump life back into your child. Do you know the determination it takes after 7 hours of that nightmare to get dressed and go to work.

Do you know what it’s like to lose a child to sepsis? Do you know what it’s like to be told, your child should have survived. Do you know how hard it is to live with myself knowing that despite everything I did, I could not protect my child? Do you know what it’s like going to bed every evening knowing that there are millions of other people just like us, who also cannot protect themselves against sepsis, because they do not have the information to do so? Do you know the force it takes for me not to break during every interview? Do you know what it’s like to have to answer questions about your child in the past tense? Do you know the anguish I face to sit in front of the one person in this country that can ensure that other families do not suffer our life sentence, but have little control in the decision. I don’t know what it is like to be in that position, but what I do know is that I don’t want you, or any other parent to have lost their child, or any child to be left without a parent from sepsis.

What you do know is that sepsis affects 150,000 people annually in the UK, what you do know is that of those, 44,000 will die. Every day 120 of those are adults, leaving children behind to grow up without their mummy or daddy, and 4 children whose parents are left in incomprehensible pain. What you do know is that one-third of those deaths are preventable. What you do know is that a large majority if treated sooner, would recover with less life limiting illnesses. What you do know is that “the time has come for sepsis”.

Do you know how hard it is to know those you trusted the most, let you down in a catastrophic way? Do you know that despite this, we somehow channel our grief into a campaign so that others don’t suffer the same debilitating pain that we do? Do you know that at the end of every day we do not blame anyone else but ourselves for somehow failing to keep our child alive? Do you know how many other parents there are out there who have had to say goodbye? Do you know how many children there are growing up without a parent? Do you know what it’s like for their family to tell them that their mummy or daddy won’t be coming home? The frustration I as a parent have to live with, being so close to our end goal but fearing it is so far away. Do you know how hard it is to think that my child’s death wasn’t enough to create change, evolution and a lasting legacy? What will your achilly’s heel be? When will enough be enough? When will you realise that you hold the answers in the palm of your hand, right in front of you. How many more children have to die, how many more mothers and fathers, grandparents and friends have to die before you realise that sepsis does not discriminate. Did you know that thanks to the symptoms being televised during one of my interviews a young mother’s life was saved. Her two week old son will now grow up with his mummy. This is about everyone. Adults, children and sepsis.

This life has been thrust upon me forcibly, in one single moment that took my breath away; and from that moment on every single breath has been a fight. A constant battle against myself. Do you know that I have no strength, no courage, no bravery, nothing but love.

Choice was taken away from me by sepsis; but you still have a choice. A choice and a chance to do the right thing. Please don’t make me continue to fight when I simply don’t have the strength to do so.

You know that we were let down; you know that William was let down with the most tragic circumstances. Don’t let us down again. So many lives depend on your decision. Make it the right one. Stand by your word that “we can raise public awareness of sepsis both in children and adults.”

See you Wednesday.

Melissa