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.

Apple version

All other versions

Williams Just Giving Page

Your hand prints on my heart

Painting pickle xx

Painting pickle xx

After checking the paint was non-toxic, covering the floor in a plastic mat, and covering the table in brown paper, we undressed you to your nappy and put you in a t-shirt bib. We were all set. Ready to make a mess, ready to make more memories, ready to make prints of your ever-growing hands, they were slowly losing their chubbiness, and mummy wanted to capture every change as you grew from a baby to a toddler. After 30 minutes of painting and 29 minutes of wrestling with you to stop eating the sponge dabber, we finally got a lovely clear hand print. It was time to pop you in the shower, after covering yourself in little hand prints, you had done an excellent job of turning yourself into a smurf. Mummy still has this little hand print on the fridge, a constant reminder of the fun we had in the short time we were blessed with you. Little did mummy know, your next hand print would be taken after you had died.

Your hand I remember placing on mummy’s face as I held you at the hospital, to feel your touch, and to feel your skin on mine. I can still feel your little hand on my face now, and your not so chubby fingers entwined with mine. I held your hand for so long that by the time I couldn’t hold you any more, your hands were warm. I wanted so much to make you warm, to pull you so close to me that somehow my breath would warm you up, but it wouldn’t. Instead I cuddled you tight, your head resting in my neck. Mummy’s tears making their way down her face landing on yours, some would land on your eyes and it would look like you were crying. Mummy had enough tears for the both of us.

When I was pregnant I would often think how amazing mother nature was. I would marvel at your perfect toes, perfect ears, perfect everything. I tried for so long to understand how all of your little features had grown and formed exactly as they should be, how, by eating food full of nutrients and sleeping well it would in turn look after you, keeping you healthy, my body nurturing you and keeping you alive. How it could even be possible that there were two hearts beating in mummy’s body. Now your little heart wasn’t beating any more, and as I laid there, with your hand on my face and my tears falling down your cheeks, it felt like mine had stopped too.

As I lay there with you wrapped around me, I could not have felt more at peace with you in my arms. That’s where you belong, in my arms, I knew these moments were sacred. I knew these moments were limited and I knew my time holding you was running out. Nothing could prepare me for the moment that I had to place you in your coffin for the last time. It felt like I was closing the lid on my life, and the truth is, I was, you were my life and you still are now. That’s when the fear set in, knowing that I would never see you again, never kiss you again, never hear you again and never be able to hold you again. I had been the first person to hold you when you were born, I was the last person to hold you before you died, and I was the last person to hold you before the little lid was shut for the last time, the light being diminished from my life forever.

My special daddy…

Today is a day that is a day dedicated to Father’s, but daddy every day is a special day that should be dedicated to you.

I know that if I was there, I would have made you a special card, with sticky fingers and lots of mess. I would have made you ginger bread men at nursery, but the little men would have come home with no arms, because I might have eaten them on the way home. Mummy would have told me not too, but I would have done it anyway, you would have loved them without arms anyway, I just know it.

With mummy’s help I would have made you breakfast in bed, but not before having snuggles, and then I would have done some really good jumping up and down on your bed. And because you’re super lucky I would have helped you eat your toast, because that’s my favourite.

But the thing is, I’m not there. But today doesn’t feel any worse than yesterday or tomorrow, maybe slightly more poignant, because we don’t get to wake up together any day and this makes me really sad. But I don’t want you to be sad, because you’re being the best daddy that I could ever wish for. And for every day that we spend apart is one day closer to the day that we’ll be together again. But daddy, you have a really important job to do, you and mummy. I gave you a really special gift, I gave you a little baby, a little brother or sister from me, because you deserve it, you deserve to be happy, you deserve to be able to hold a little baby again and you deserve to love and be loved. Just like we did.

Daddy I really miss you, and I see how upset you are, I see mummy cry and hurt and I see how you look after her. I know how much you worry about her. I know that despite all of your own pain you make sure that she is ok and the little peanut growing inside her belly. I know there will always be something missing from our little family of four, but just know daddy that I follow you around all the time. I never leave your side. I know that your strength comes from me and as you gently put one foot in front of the other, I will hold you. I will quietly slip my little hand into yours and slowly help you forwards.

From my little white fluffy cloud I’m sending you the biggest, squeeziest of all the hugs.

I love you daddy, your little William xxxxx


PTSD and me

Today as I stepped out of bed on day 550 without you I looked out of the window for some inspiration. I didn’t find any.

There is no one day easier than another, I am yet to wake up any morning and think, well I don’t miss you as much today. My thoughts are always with you. My tears are all for you. I suspect you can see mummy from the little white fluffy cloud on which you now reside; but I know if you can see your mummy you’ll also know that she can’t help it. I have long since given up thinking that time heals, that one day I’ll come to terms with losing you. Simply, I won’t, how can I?

More than ever I can’t cope with knowing that I couldn’t save you. You didn’t deserve this. You deserved the world. You deserved to be happy. You deserved the chance to live your life how you chose. Your life so cruelly taken away from you by others. Maybe that day they went into work with something on their mind, perhaps they were tired. But you gave your life for their mistakes, there is no bigger sacrifice, and if mummy could she would give everything for you to have breath back in your broken little body.

Sweetheart, I think that some people think that after 550 days I should be functioning better, that I should be capable of getting through a day without breaking down. Or that perhaps I shouldn’t be as vulnerable and fragile as I am. I don’t think anyone will ever understand the path that I tread. It is not a path that anyone else can say they have been on, after all, only I know my pain of losing you. Daddy treads his own path, others tread different paths. But no one treads mummy’s path.

The moment that mummy heard those words ‘I’m sorry my love, but he’s gone’ my life changed irrevocably. There was no going back, no going back to the normal life we had created together. No more cosy morning snuggles, no watching you point your toes and jiggle your little feet when you are excited, no sneaking into your room in the night to stroke your silky soft hair. Mummy used to do that, you probably knew that, but you let me, because you know mummy needed to. What I would do to just hold you one more time.

Some people don’t understand that by the time I have managed to dress myself in the morning, I have already been awake crying for several hours, if I’ve been to sleep at all. Some people don’t understand that some days fast movement, lots of noise or colour gives me a sensory overload. Trying to explain to someone why I’m so hypersensitive is virtually impossible, let alone trying to explain how the flashbacks cripple me. You see people don’t understand PTSD, people think I should stop thinking about it. How can I? Could they? I don’t think so, not if they had witnessed losing you. I can’t stop thinking about it, I don’t have a choice. PTSD isn’t simply a memory recollection, something you can summon and then change to think about something completely different. When my brain decides, I will re-live the moment that I found you again. Frozen in bed, not being able to move, paralysed by fear, in my mind, you are next door, in your cot, passed away. Somehow the light, the sounds, the smells are the same. It is that morning again. I can’t remember how many hours I sat cross-legged on your floor, hands tightly gripping the bars of your cot, head pressed against the bars so hard there were two lines on my forehead, staring, my eyes pleading with the spot where you took your last breath, pleading for you to not be there, not like that, not again. I think it took 6 hours for my brain to realise that you weren’t there. For those 6 hours in my mind I had been staring at your broken little body. But of course you weren’t there. Try telling my mind that. It is like being trapped in a nightmare, not able to wake up because of course you are already awake. Being suffocated by the nightmare as you have no idea that it isn’t real or that it isn’t really happening again.

PTSD is so debilitating. I don’t get a choice, I can’t just not think about ‘it’. The trauma of losing you so vivid, mummy is forced to re-live losing you all over again, I can’t help it. It’s not just a memory, it’s not something that I can distract myself from. It is not something that I can explain to people unless of course they have experienced it. They do not understand that one minute you are seemingly ok and confident to the next minute being scared to exist in what is a co-dependent bubble. And when it strikes it is like having a wound re-opened, and left constantly open. Social situations are a no go area, draining, emotionally exhausting, overwhelming, frozen and incapable of functioning. In a nutshell PTSD is not being able to differentiate in your mind the past, the present and the future.

I wish people would be patient, I wish people would not judge. I wish I didn’t have to keep justifying how and why I feel like I’m in a sinking abyss. No one will ever understand the pain of losing you, a life sentence, one that will not be over until I take my last breath and we are together again.

You will never know sweetheart how much mummy needs you. You changed my life, mummy is so blessed that you picked me. I sit here looking at your photo’s, your captivating smile, your sparkling eyes coming alive from every photo. You probably see mummy touch your photos, hoping that she can feel you chubby soft skin once more; but I never will. I remember the last time I ever held you. I traced every inch of your little body with my finger, my eyes closed, assigning every little fold and crease to memory. Even then, twenty days after you had passed away you were still perfect. God, mummy misses you so much. People just don’t get it. It just does not get easier.

So, my message to the lovely people who I encounter every day in my life, please don’t judge, don’t criticise, be patient, be calm, be respectful and most of all, give me time. I estimate it will take a lifetime.


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.