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.

The strength of a bereaved parent, the strength of friends

When someone is going through a storm, your silent presence is more powerful than a million, empty words…

Since William passed away I have lost count of how many well wishers imparted their advice that Paul and I need to be strong for each other, all said with a kind and heavy heart. But those who have lost a child will know, this is almost impossible. It is an uphill struggle to tread water let alone try to support anyone through their grief, this may sound selfish, but it’s really not. We have lost the same little person, the bomb that exploded in our lives left no prisoners. How, when I constantly resist the urge to join William can I support Paul? How can Paul when he is devoured by grief even begin to imagine trying to prop me up in the process. The most we can do is simply be ‘there’. We support each other, we are there when the other falls. When one crumbles the other crumbles, both consumed by an avalanche of what if’s, searching desperately for the answers. Grief affects everyone differently, everyone reacts to it differently, and everyone is on their own journey.

I have found solace with other bereaved parents, those that truly understand what the definition of strength is. Day to-day, strength for a bereaved parent can be defined as getting out of bed, maybe taking a shower, eating when you really don’t want to.Opening the mail and paying that bill that really is no longer relevant. But, real strength is holding your child for the last time and knowing it will be the last time you ever hold their perfect little being, the last time you will ever place a lingering kiss on their flawless skin. Strength is placing them in their forever bed and closing the lid, knowing that you will never touch them again, never see them, or be in their presence.

Strength is having to pick a beautiful coffin, when this is the absolute last task you ever want to do but knowing it has to be absolutely perfect, beautiful and comfortable. Strength is carrying your child into his own funeral knowing you will never feel the weight of him in your arms again. Strength is going to the crematorium and collecting your child’s ashes. So small, so light, in a bag you carry your child to the car, not to put him in his car seat but to hold him on your lap, not taking your eyes of this tiny little box that contains what remains of your precious child. Strength is battling for months and months for those involved in your child’s death to apologise, but knowing that until that happens you have to fight until there is no fight left. Strength is putting one foot in front of the other when the last place you want to be is walking this Earth without your child.

There is no-one stronger that walks this Earth than a parent that has lost a child, whether that be a child lost during those months of pregnancy, whether it be a baby born sleeping, an infant like William, or a child that you have watched grow into the most amazing person, and there is nothing stronger than the friendship between two bereaved parents. That one person you meet in the most excruciating circumstances, but that one person that understands, that just knows. Knows that when you are feeling desperate, they know just what to say, that what they say comes from the same painful experience. I have spoken to many bereaved parents and I always will. It is a world I knew was there but I never knew just how many are affected.

So, to those bereaved parents out there, and to one person in particular who I think I’d be lost without, not only do I share your pain but I share your strength, and when you wobble, you can have some of my strength. I admire your courage to keep going for your little boy, the little boy who lost his beautiful little brother. Many will say “I don’t know how you do it, I don’t know how I’d cope.” I’ve heard this many times, but it really doesn’t help, somehow it makes me feel that I’m coping when I shouldn’t be. We don’t know how we do it, we don’t know how we cope, or even that we are coping. We have no choice, but I do know that we wouldn’t cope without each other. So I know that when you, my friend take your little sidekick to the soft play area, you’re doing it because your strength is insurmountable; but I’m not fooled, to watch one child play rather than two creates a pain so palpable I can feel it. I share your pain, I know THE pain, I don’t know your pain, but know that I’m here when there are few people who can really say the right thing. Thomas is an absolute credit to you, and he will be so proud of you, as am I, always.

Dearest friend please know you can do the impossible because you have been through the unimaginable.