Thinking of Oscar
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We had an inspirational trip to Alder Hey Children’s Hospital today to visit one of our advisors and introduce them to a partner organisation of ours.

Alder Hey Children’s Hospital moved to a brand new site two years ago and is driven by innovation. They are very ‘patient first’ and this has resulted in the creation of a unique environment which is incredibly well placed to improve outcomes for children. Innovation at Alder Hey in the Park, the new site, is evident on arrival. Inspired by design suggestions from children at the hospital there is a strong focus on connecting the indoor and outdoor environments. Common across many of the suggestions submitted were images of the outdoors and so three wings of the hospital represent leaves.

This layout, whilst harder work for the staff in terms navigating themselves around the hospital site, is optimal for patients because it means that each room has access to natural light. Play areas at the end of each wing all open out to an outdoor play area and a view of greenery.

Inside the architecture is similarly thoughtful and innovative, from a heavy use of wood, which has a calming influence, to the absence of use of traditional cleaning materials (the hospital does not smell like a hospital), to the placement of tactile characters which are found through out the hospital, a huge amount of thought and effort has gone into creating a space where the stress of being in hospital, for both the child and their family, is significantly reduced. One of the areas I was most struck by was this very normal looking kitchen.

Every ward has it’s own kitchen… originally set up just for children being treated for various forms of cancer, who struggle tasting food as a result of their treatment, the hospital quickly learned that rather than being an exceptional overhead, offering the children what they wanted to eat, at the time of day or night that suited them dramatically reduced wastage and therefore cost. It is too early to measure the healing benefits of this innovative approach but it’s a logical assumption that benefits to their rate of healing and general well being would be increased.

As we have learned through our work to date with Thinking of Oscar, Paediatric Healthcare is a proportionately under invested segment and new innovations are typically targeted at problems facing adults. These may then adapted for use for children and babies, and sometimes this means that potential benefits are compromised. Alder Hey have a specialist innovation team who are very focused on evaluating and successfully deploying innovative technologies and practices for the benefit of the children in their care. From an AI driven app, which aids communication between the hospital and the patient and their parents as well as providing entertainment to distract them, to 3D printers which are used to create various simulated body parts to improve the realism of training, to Virtual Reality systems enabling a clinician to ‘walk’ around the body prior to a critical operation to help them to plan an approach.

2017 has been an incredibly busy year for Thinking of Oscar. We are still in the process of updating our website with all of the projects which are now underway, and if you are interested then please do check back with us periodically as you will note constant change. The partner organisation we introduced today to Alder Hey are Babypod.com. In conjunction with Williams Advanced Engineering they are building highly technical devices which facilitate the easier and safer transportation and scanning of very young children. We intend to fund a number of these into a number of hospitals across England over the next 12 months.

Visits like today are so important to help us to continue to inform our thinking as to the best ways to successfully apply innovation into paediatrics and to learn from the expertise of others.

#thinkingofoscar

I pick up my pen less often now. It’s not that our heads are empty but oftentimes there’s not much new to say. Today it is three years since Oscar died which feels like yesterday and yet a lifetime ago. I remember people saying at the time “You’ll always carry him in your hearts”. That gives me as little comfort now as it did then. How does that help me? I want him here. I’m struck by the enormity and lastingness of recent events that have impacted the UK – I’m thinking about the terrorist attacks in Manchester and London and then last week’s devastating tower block fire. And I just keep thinking, what are the survivors or the families of those who died doing right now? Someone made a really good point last week, as donations flooded in to help those who survived the fire but were left with nothing, which was to remember them next week, next month, next year… The day after Oscar died I vividly recall standing in our living room and becoming aware of the traffic passing our house. I couldn’t get out of my head the fact that the rest of the world was just going about it’s normal business. How was Oscar not the headline on the 6pm news? Seriously? Why was the world not stopping? It’s the same here. As I reeled off to Holly this evening all of the special things that she had enjoyed this weekend, and what it was that made her lucky… that being that she got to do all of that with her family, my mind was turning to the kids who lost everything last week. The kids who, when Holly and Barney were careering naked in and out of a cool paddling pool with ice-cream on their faces, were probably stuck in a stuffy, crowded community hall or a B&B somewhere wondering where home was going to be. It makes you very aware that there is suffering and difficulty the world over and that it is the lasting kindness and support of others that enables people to survive.

This time last year we reflected on the previous 12 months and we have been doing the same this evening. It has been our most challenging year to date with respect to Thinking of Oscar. We had been fundraising for projects to improve the experiences of children and their families in hospital care and one of these was a proposed paediatric procedures unit. It was to have been completed before the onset of winter last year, would have been built in Oscar’s name, would have benefited several thousand children each year, been a potentially replicable project across the UK and was set to cost in the region of £100,000. Instead, no progress was made in twelve months due to the complexities of the hospital’s PFI contracts and having to work through multiple third parties. Finally the quote came in at £350,000, a figure grossly disproportionate to the actual effort required and much more a reflection of margins, legal fees and penalty fees due to changing the original purpose of the physical estate. Frustrating doesn’t begin to cover it. Having raised the money and even identified exactly where the unit was to have been sited it was a huge set back – first of all emotionally. It was a massive let down. We felt that the future of Thinking of Oscar had been jeopardised and we could have been sunk before we were really off the ground. We picked ourselves up over the next few days and regrouped. It has taken the past six months but finally it feels like we are moving forward again. We had another successful Blenheim Triathlon earlier this month. We focused much less on fundraising this year and much more on involving new groups of people in the team. Despite that the team managed to raise more than £30,000 on the day which we were staggered by. It gave us the boost that we needed and since then we have completed a series of meetings with the hospital and are significantly closer to being able to make some really interesting investments to help improve children’s hospital experiences. Our intention is that 2017 is the year of spending, and therefore generating benefit for TOO, which we hope, in turn, makes it increasingly easy for people to support the charity as they will have more good stories to tell.

On the personal front it’s David’s turn to talk this time. He traveled to the States recently on business and found himself sat on the plane, not wanting to be away from his family and so writing this piece for Oscar’s blue book, a book I’ve been writing in since the first weeks after he died. This has become a part of our blog post today.

Three years feels like a very short space of time, but also a lifetime and a lot has changed

“When you are away from your children, naturally you miss them.  Since my daughter Holly was two years old she has been spending one night at her grandparent’s house most weeks.  She loves it and they love it and, in having this arrangement, they have an amazing relationship. However, I still miss her, desperately.  I miss her messing around at bedtime and not eating her dinner.  I miss her waking me up in the morning before 6am and even when she has a bad dream in the middle of the night.  I hear and read on social media how my friends miss their children even when they are at school or if they have had to go away for business or occasionally their child might have stayed away at a friend’s house and I totally understand how they feel. The difference is, they know they will see their child in a day or perhaps a couple of days.  With modern technology they could even see them via video chat whilst they are away. When it comes to Oscar, Hannah, and I cannot. 

Three years ago today my life was turned upside down and irrevocably changed. Our 16 month old son, Oscar, was suddenly and inexplicably taken from us.  After the sheer bafflement and excruciating pain of trying to understand what happened hits you, the next emotion that comes is ‘my life is over’, ‘our life is over’, and then ‘what is this going to mean for Holly?.’  As a parent you always want to protect your child. It felt as though we had failed to do so for Oscar and now how was Holly going to cope having to experience the death of her little brother at the age of three? A decision that I think will haunt me for the rest of my life is having to leave Oscar in hospital an hour or so after he died so that we could get home to put Holly to bed.  That was it. We never saw him again. We held him in our arms until the end and then had to simply walk out of the door. No one said or did anything. We were on our own, walking the corridors of the hospital, trying to find where we had parked the car to go home and see our daughter. I have no idea how I drove home that day, staring at Oscar’s empty car seat at every stop and then at the deep blue sky above. We have always said that just being left to walk out of the hospital on our own was just torture.  There was no support or guidance, not even a back door to be slipped out of to avoid the crowds like a musician at their own concert. We had to visit his hospital room (which was now being used by another sick child) to pick up our belongings on our way out and then take the front door like everyone else. Our world had stopped but the rest of the world kept on going on around us – as it does today. Sadly many, many more parents do and will feel the devastating loss that we felt and feel. We have always said that we never want the lack of support that we experienced to happen to another family again, and hopefully processes have been put in place to make sure that parents are not just left to walk away, it’s just another line on a list of things we want to do in Oscar’s memory.

Three years feels like a very short space of time, but also a lifetime and a lot has changed in those 3 years, both in the world around us but also in our own lives.  First and foremost, just before the first anniversary of Oscar’s death our amazing little boy Barney, or ‘Bear’ as he is known to his friends, was born. At home, in the kitchen, just as we had hoped.  He and Holly (now 6 and a half) really are the ones that continue to get us out of bed in the morning (literally and figuratively), just as Holly did on June 20th 2014.  Much as we just wanted to hide away from the world and everything in it, we had to get up and take Holly to school. Hannah has written extensively about this and she very much echo’s both of our thoughts on life but what I feel compelled to write about here are the gifts that Oscar has given us and the changes that his memory has put into our lives. Of course, aside from Barney, probably the most important change, thanks to Oscar, is the creation of Thinking of Oscar.        

One big change in my new life is a passion for knowledge. This may be a cliché but until now I have never really known what I wanted to do when I grew up. I have always been interested in a wide variety of things and if I was really interested then I would be almost obsessive about it.  This mainly related to sport – cricket, football, rugby, golf, tennis, snooker – anything really that I could watch on tele and have a knowledgeable conversation about with my friends. Cricket especially as I have always found the strategy and statistics involved in it to be fascinating. Most people would see sitting at a Test Match for five days straight, potentially to see neither side come out victorious at the end as tedious, or worse, but I love it and actually continue to do so, albeit to a less obsessive extent. History at school also fascinated me, mainly because my Dad loves it so much, I think, and so it meant that we could work together on projects. Later I moved to Australia for a time (spending a year watching England lose at cricket) and so became obsessed with Australia and it’s culture, sports, cities, food and wine. That led to, let’s say, a passion, for wine, which enabled me to gain wine industry qualifications and also allowed me to have more informed opinions on the subject. In my new life, some of these things remain whilst others have become a more occasional interest.

My inclination to be slightly obsessive remains though, however it is now firmly set on making the world a better place and in doing meaningful things with my life. In seeking knowledge I have started to read and listen to audio books extensively. Biographies and Autobiographies of people I class as visionaries from the business world like Elon Musk and Steve Jobs as well as less well known authors talking about the rapidly changing world around us with regards to technology and entrepreneurial ventures.  Inspiring personal stories from the likes of the triathlete / Iron Woman – Chrissie Wellington and cyclist Sir Bradly Wiggins. I read about advice to live your life by from the likes of Dr Steve Peters (who helped British Cycling become the tour de force that it is today), the New Zealand rugby team (did you know that they always sweep their own changing room after every game?), and most recently a book called Solve for Happy: Engineer Your Path to Joy, by Mo Gawdat, who is currently Chief Business Officer at Google X. Unfortunately Mr Gawdat and I share a common bond in that we have both lost children. Both in sudden and very unexpected circumstances, but also at very different times of their lives. His son, Ali was 21 when he died and has left an everlasting mark on the world, just as Oscar has done in his own small way. One part of the book which sticks out for me is Mo’s belief that in order to really live life, you need to challenge the way in which you view it. Hannah and I have always felt that a part of us died when Oscar did, we knew that we could never go back to our old life and so have tried our best to move forward and do new things, seek new challenges and learn different things. I remember that I felt, and still feel today, that I lost the relative innocence of life [when Oscar died] that most people (certainly in UK, although sadly more and more are losing it given recent tragedies) are fortunate enough to experience.  I no longer fear death, certainly not my own. The welfare of Hannah, Holly, Barney and our parents and family, I still fear for, but I also hope that, without fear for myself, (of course without being reckless) I can do things I never dreamed of and in some ways I already am.

Hannah and I decided that we needed to set up Thinking of Oscar very soon after he died.  We had no idea what it would become or what we had to do, we just knew that we wanted to keep his memory alive.  I had fantastic support from my boss at IBM (as Hannah did at her company) and he organised for me to be given the time that I needed.  During this time I worked during the day and then Hannah joined me in the evenings to get the website set up, charity status activated and then fund raising events organised in order to kick us off.  By that point we had decided that the 2015 Blenheim Palace Triathlon would be our big launch and so I threw myself into training as much as I could. In the weeks and months after Oscar’s death both Hannah and I found benefit in running. We were both runners anyway (Hannah had got me into it soon after we met) but this time it helped us to think. This was not always beneficial being left to your own thoughts, but mostly it was helpful. Often one of us would return, tears streaming, and sharing our thoughts but generally feeling a little bit better. I found most enjoyment in cycling though and have done so ever since. Firstly you can get places quicker and further away on a bike then when you are just running but most of all it was something I had not done in my old life so it was a another positive reminder of Oscar.

When I eventually did return to work I knew that I needed to do something meaningful. Leaving IBM was maybe one change too many, at the time, and they were also just in the process of launching their Artificial Intelligence division, Watson.  Watson was being showcased as being able to revolutionise medicine so for me that was the only place I could return to. IBM had worked with large oncology hospitals in the US to help doctors diagnose cancer treatment for patients and I had to believe that at some point in the future something could do the same for paediatrics. Now I was involved with technology that could not only change the face of healthcare but every other industry with it. Suddenly with Thinking of Oscar and our aim of helping children in hospital, coupled with IBM’s potentially life changing technology, I was at the epi-centre of something very important.  IBM has given me the opportunity to stand up on stage and talk not only about the changing technological landscape but also about Oscar and Thinking of Oscar. In January 2016 I accompanied a colleague to the University of Oxford Said Business School to do a talk on Watson. Following this event I was asked if I would be prepared to speak at the Oxford Union to introduce its members to Watson and AI. Just before I spoke at the Oxford Union I was invited to speak at Imperial College London’s Business School. How did this happen?  I was suddenly being asked to talk at places that, in my old life, would never have considered allowing me to participate on one of their courses and now I was being asked to speak to their students. Speaking at The Oxford Union was an experience I will never forget. I can honestly say that Hannah was more nervous that I was about the whole thing even though I was working with a Robot that may or may not have behaved. I cannot bring myself to watch the video, which is on YouTube, but it continues to attract requests for me to participate in conferences and address students.  I have now spoken on a panel at UCL on the future of work, Key Noted for a future of marketing event and done numerous talks at different University of Oxford colleges and schools. My father-in-law, an ex-student and Professor at Oxford, was both delighted and perhaps a little surprised when I told him that I had been asked to be a Digital Healthcare Expert in Residence at the University of Oxford. The relevant medical network that Oscar is enabling me to build is something I value enormously.”

David and I both talk about the difficulty of the passing of time and the necessity to dramatically pivot our life path in order to survive and appreciate our journey, because the Oscar shaped hole on the original trajectory is too painful to bear. We both talk about a lasting numbness. It is especially noticeable at things called special occasions where I’m just completely unable to connect, which is in turn tricky because the isolation is another reminder of our changed life. That’s not to say we don’t have lots of happy times though. We remain close, perhaps we’ve become closer, to our families and appreciate the fun that we have with them and with our friends. Despite the bumps along the road so far, we do believe that the purpose of Thinking of Oscar has been validated. We learned, when Oscar died, that you really do not know what is around the corner but in this context of the charity we are hopeful and a little excited for what may be to come.

Dear Oscar,

I can’t believe that tomorrow you should be four years old.  A lot has happened in your short life and the one that followed.  Most importantly to you is that Holly and Barney are happy.  Holly still talks about you all the time.  [···]

A while back I asked Holly what made her smile. The conversation was so interesting I scribbled it down straight away and I’ve just found the piece of paper which I wrote it down on:

 [···]

I write in my book less at the moment. It’s not that I don’t have anything to say, nor that my thoughts aren’t whirring all the time. It’s only that I am aware that sometimes we share those thoughts via our blog post and these days there is nothing much new to add.

 [···]

Tomorrow marks another milestone for our family. Oscar lived for 499 days. Tomorrow Barney will be 500 days old. I met a bereaved mother once who told me she had an image of her daughter in a boat out at sea, slowly bobbing further and further away from her and I can recognise that painful but true inevitability. Oscar dying was so inconceivable, so unlikely and so sudden. We have had incredible support from many different sources since he died, and one of those has been Oxford University Hospitals NHS Foundation Trust. They have a genetics study underway. It’s an expensive process and they have to put together a business case for each family that they put through the study. They have to believe that they will prove a positive outcome – that is to say, that they can prove that there is a generic reason behind whatever the situation is that they are exploring for that family. They took us into the programme for a different reason. Nobody believed that Oscar had a genetic flaw or disposition that meant that his life was at risk. But the team wanted to be able to rule it out for us. That was a really kind gesture for them to make.

 [···]

From the very beginning I knew that I needed to write. Not for a blog but for David and I and for Holly and Oscar. For us because the thought of feeling the way we did in those early weeks for the rest of our lives was unbearable and inconceivable and yet we could not imagine feeling any other way. I wanted to write down the journey so that when we were having a dark day 2 years, 5 years, 10 years down the line, maybe we would be able to see for ourselves that we were in a different place even if we didn’t feel that that was the case. I needed to write for the sake of Holly so that she would know that she was the rock, the constant that is in our life even when she’s being a teenager before her time. I needed to write it for Oscar because I needed a place to catch my thoughts. Now maybe it’s for Barney too to understand more about the brother he never met. [···]