It’s personal

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Things have been tricky for me lately. My two-week summer break turned out to be anything but restful and definitely not a break from the NHS.

My 10 year-old daughter Sophie was diagnosed with a brain tumour, and I got to see the NHS at its absolute finest.  I’ll tell you the story, partly because I want to tell it for me, but also because – even in the scariest moments – I couldn’t help but see the world through a leadership lens.

On my last Friday before leave, Sophie attended a regular optician appointment.  The optician noticed slightly swollen optical nerves and wanted us to see our doctor (that optician is definitely in line for a bottle of wine!). The next day being a weekend, we bypassed our GP and took her to the Sussex Eye Hospital where they confirmed the swelling, and sent her to the Royal Alexandra Children’s Hospital (the Alex) at the Royal Sussex across the road to see a paediatrician. They ordered an MRI scan for Monday – just to rule out anything concerning.

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King’s College Hospital in London

The scan showed a tumour: a small solid mass with a fluid cyst about  the size of a satsuma.  I’ll remember always the moment where my shuddering fears came true.  And I’ll remain thankful for the skilful, human talent with which the consultant paediatrician delivered the news.

Sophie was taken to King’s College Hospital in London that Monday night and operated on from lunchtime on Tuesday.  The paediatric neurosurgeons – and their teams – did thoroughly fabulous jobs.  The post op MRI showed no trace of any tumour left behind.  And the histopathology showed the tumour – a grade I pilocytic astrocytoma – was benign.  My relief as a father was immense, and my gratitude to the surgeons immeasurable.

But it’s not just the medics who have moved me to write.  The care on the ward and elsewhere was almost unerringly brilliant. The nurses who saw Sophie and I through the first two days and nights on the paediatric HDU when Sophie was in pain – were wonderful.  The pain nurse was utterly fabulous. He asserted himself with aplomb with the more senior doctors to influence the right mix of pain relief, and we felt fully included in all decisions.

We then moved from HDU to Lions ward, and through the difficult times of post-op recovery I continued to see the world through leadership eyes. The climate on the ward is a potent mix of compassionate patient-focused care and professionally-dedicated clinical practice.  As I watched the sister, I saw her clinically demanding but personally-caring style transmitted through her team and arrive at the bedside. I was reminded that at the Academy we are developing a new Model of Healthcare Leadership to replace the leadership framework – and I was witnessing a key plank of the research findings in action: that if you expect patients to experience care in their treatment by your teams, then your teams must experience care in the leadership practice you supply to them.

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Sophie Lake

Under this care, Sophie grew stronger and was discharged from King’s on the Saturday.  I wish my blog could stop at this point, but that would be premature.  The following Tuesday, Sophie’s energy dropped and on a short trip to town, she vomited.  That evening, she had an epileptic seizure – and our NHS again swung into action.  We had 999 on one line and one of the neurosurgeons from King’s on the other talking me through what to do. Sophie was stabilised with some calming intravenous drugs (the paramedics get the award, by the way, for the speediest vein finding and cannula insertion) and was blue-lighted to Brighton and back to the Alex.  In the resus suite, even though I was wrapped up in Sophie’s condition, I noticed the quality of teamwork. Communication, trust and challenge flowed around us with leadership passing naturally between the nurse specialist and the emergency paediatrician.

Several more days in another HDU meant more scans, more sleeping beside Sophie on a pull-down bed, more cannulas and more antibacterial hand-rubbing.  It also meant more excellent care at the Alex that matched that from King’s. The doctors and nurses worked together with purposeful and practiced team work all dedicated to the patients and families in their care.  And on the day of Sophie’s (second) discharge, Tracie, who had seen us into resus, stopped by to say a personal goodbye and see the result of the work of which she’d been a (vital) part.

The impact of patient-focused leadership was plain to see throughout our time at King’s and the Alex.

Indeed, the moment I started any attempt at thanks to one of the paediatric neurosurgeons, he brushed my gratitude aside saying that he was just one member of a wider team who were all reliant on each other for the successful treatment of patients.  What’s even more impressive is that he said this both in private when he could have soaked up the glory, and in public when he was keen to share praise with colleagues from all clinical tribes. The same happened when I later emailed the Chief Exec of King’s (I’d met him a couple of times through work) to say thanks – he readily spread the praise to his team calling them ‘very compassionate people’.

The night Sophie had her seizure, both way into the night and over the days since, Baz from King’s kept in touch with a wonderful mix of clinical wisdom and empathetic support.  His care has been way, way above the call of duty.  When I thanked him he humbled me, saying simply: “No thanks needed, it’s not just any job, it’s personal”.   And he’s right. I was drawn into my role at the Academy because development is my love, and leadership my expertise. Now here, I’m dedicated to doing the best job I can because it’s our NHS.  And it’s personal.

I would like to name, and say a massive thank you to these staff:

  • Trevor Hoare, optician, Burgess Hill Specsavers
  • Catherine Wynne, consultant paediatrician at the Royal Alexandra Children’s Hospital, Brighton and Sussex University Hospitals NHS Trust
  • Tony Elias and Chris Chandler – paediatric neurosurgeons, King’s College Hospital NHS Foundation Trust
  • Claire, Alison, Ali and Matty – the nurses on the paediatric HDU at King’s College Hospital NHS Foundation Trust
  • Graham, the pain nurse at King’s College Hospital NHS Foundation Trust
  • Rani Nair, sister on the Lions ward at King’s College Hospital NHS Foundation Trust
  • Baz Zebian, neurosurgeon at King’s College Hospital NHS Foundation Trust
  • Tracie, nurse specialist, and Catherine, emergency paediatrician at the Royal Alexandra Children’s Hospital, Brighton and Sussex University Hospitals NHS Trust
  • Sathish and Oli the doctors, Emma, Gemma and Hannah the nurses – and others whose names I didn’t catch – at the Royal Alexandra Children’s Hospital, Brighton and Sussex University Hospitals NHS Trust

22 thoughts on “It’s personal

  1. Oh my goodness! I hope your daughter is making a full and speedy recovery. Best wishes to you all x

  2. Wow! I sincerely hope your daughter makes a full speedy recovery. Its so good to read about all the good work and compassion that is given by our NHS. x

  3. What a shock to read. How frightening. Horrid to hear about a child in pain, what a brave small person. No idea how you kept your head as parents. Stuff of worst nightmares. And, whilst it sounds like you had a very positive NHS experience I know that you would have been super aware of every possible moment of pitfall, which is both helpful and anxiety provoking . So glad it sounds like it is over. So glad you all came out of it impressed with the NHS. I have to say, sounds like your daughter was a superstar. Take time to breathe. Melinda xxxx ps life eh?! Every moment precious.

  4. A very moving and powerful personal story, thank you for sharing this Chris. Really demonstrates the importance of primary care… and a diligent optician. Good wishes to you and your family x

  5. Chris

    My heart and my thoughts go out to you and Sophie both as a father and a human being. What a traumatic time and I think that it is a measure of your passion for the NHS that you have taken time out to share this experience. I hope to share this as widely as possible as it is these real-life experiences that are so much more common than the nightmare stories that get circulated and yet are often unheard.

    1. Thank you Stephen and all those kind people that have commented here or on twitter or direct to me by text and f2f. I’m touched. Sophie is recovering – and very pleased to have become just a little famous.

  6. i am so thrilled your daughter is much better we treasure our children. also proud that my son works in that a/e they are a fabulous team of nurses, i often wonder how he does it, as his sister my daughter died in a terrible road accident, so for us it is a thrill when you hear and say your very kind words about the wonderful staff there, i hope your daughter continues on her journey to a long and healthy life , every happiness to you all.

    1. Carol
      Sophie continues to make good progress and returns more each day to her lively healthy and somewhat loud self. I’m sorry about your own daughter – your message touched me deeply, reminding me that even though the last 2 weeks have been difficult, they could have been so much worse. And it was the wonderful teams at King’s and Brighton that made the difference.

  7. Hi Chris,
    It was good to see you yesterday and thanks for sharing this. I was so thrilled to hear that things are ok now after what was undoubtedly a terrifying, nightmare of an ordeal. Thank you for the eloquence with which you described your experiences in a way which gives us all hope and well done on pitching up as normal and delivering your stuff to us- I appreciate it can’t be easy when your head and heart are full of so much other stuff. Sophie looks great even after what she’s been through, so love to her and you and yours. Paul.

  8. Very heartfelt words Chris. So glad Sophie is on the way to recovery. This reminds me of what you always endorse in your approach to leadership development – that who we are and the roles we fulfil are not just shaped by the role we are playing at the time – but by our life experiences. I can imagine it’s often difficult to share these, but when you can it really helps to have a shared understanding of the challenges people are facing, both within and outside of work. Thanks for sharing your story. Amy x

  9. Thank you for sharing what must have been the nightmare for any parent. It is good to see from your pictures that Sophie looks well on her way to recovery.

    The responsiveness from the very first indication of something not quite as it should be was impressive and these are the areas we don’t always appreciate or recognise as we should.

    My son within his normal check up at the optician had retinal tears identified and speedy laser work at the local hospital probably saved major deteriation of his sight.

    The importance of regular check ups at opticians and dentists cannot be under estimated for all age groups, so congratulations to yourselves in having a regular appointment booked which provided the opportunity for the condition to be identified.
    Wendy Kelvin

  10. It is so refreshing to read such a well written, informative positive story about our fabulous NHS opposed to what sometimes feels like a stream of negativity. Patients, family members and indeed staff need to be exposed to more of this to foster a culture of positivity, belief and excellence, eradicating the negative steriotypical views that cloud the great life saving work delivered all over the country daily.

    All the best to you and your family. Adele

  11. Respect Chris. Well done mate.

    Thank you very much for detailing this and sharing it so widely. My son spent five days in a coma at Kings about three years ago and the staff there were totally brilliant. I could not thank them enough then and so I will take opportunity to thank them again now. It is so good to see people bigging up what is such a fantastic service instead of joining in with the negativity and criticism. I work for the National Health Service because I think it is fundamental to democracy and to the nature of the humanity of this society. I work with people that care and seek to contribute something that really matters. The people on the SOL programme, on the Top Leaders programme and others that we work with have proven to be amazing, life enhancing people to engage with. Time and time again I have seen and experienced nobility beyond measure, kindness beyond duty, creative intelligence that stretches beyond the boundaries of the ‘job’ and strays into the territory of trancendance – into an area that does justice to the potential for greatness of our too often divided species. That’s our job isn’t it Chris? Helping people bring their intelligence, humanity and diversity to the task of skilfully creating something that defines us as a society to be proud of? That’s our leadership task?

    I believe that the depth of challenge and the complexity of the task NHS leadership faces is such that we, as developers of leaders, have to engage our intelligence, our nobility, our compassion, our courage and apply it to our practice so that we can help them to do that to theirs. We must never be satisfied with what we do but must constantly seek to improve our practice so we can help others improve.

    I met you with your family once briefly Chris. They were beautiful. You have a wonderful family. (I’m not sure how you got to be that lucky, but you are!) I am glad that things are working out well now for Sophie. I hope you and your family take time to get over the traumatic experience.

    Take care. Eden

  12. Harrowing. Wonderful NHS response. I send my best regards to you, your daughter and the family and friends. Great future!

  13. Hello Chris,
    As a mother my instinct is to say how terrifying an experience this must have been for Sophie and your family. As a clinical nurse/midwife of some 30 years it is heart warming to see the NHS working at its best. Hope Sophie is feeling much better and makes a full recovery.

  14. Heart and warm thoughts go out to you, sophie and your family! I am always suprised that there is a perception by some people that the NHS care and support is not adequate. In my own experiences I have nothing but praise for the teams I have come into contact with. The empathy, team work, knowledge and experience is clear to see and is amazing. Our NHS and our communities should be proud.

  15. Thank you so much, Chris, for sharing such a deeply personal and intensely affecting experience. I do hope your daughter makes a full and speedy recovery. And thank you too for highlighting the extraordinary work of NHS staff who, I know, hate to be called ‘unsung heroes’ but that is precisely what so many are. I have worked in NHS communications and public relations for 20 years and have spent much of that time defending the health service from the slings and arrows of inaccurate and unfair media reporting (as well as helping NHS organisations to deal with crises when things do go badly wrong.)

    I would also like to share a personal experience. Two months ago my 84-year-old father was diagnosed with terminal cancer and expressed his desire to remain at home in March in Cambridgeshire. Community services are frequently criticised and I know provision across the country can be patchy. However, I can honestly say that the care and treatment my father has received at home has been exemplary and shows the NHS at its compassionate, empathic and humane best. Without exception district nurses, healthcare assistants, occupational therapists and my father’s GP have been highly professional, responsive and caring, reassuring my father both in words and actions that he may have whatever he needs, whenever he needs it to ease his condition and spare him unnecessary suffering. My father, and his family, are deeply grateful for all that is being done by his local NHS to enhance the quality of whatever time he has left – and in doing so, to support his family through a profoundly sad and difficult time.

  16. I turned the TV off this morning. It was a semi-religious programme called Sunday Morning Live on BBC1. The question for study and debate was ‘Do our hospitals lack compassion?’ The very introduction made me boil as Bishop Michael Nazir-Ali, former Bishop of Rochester, opened by saying that the papers were yet again full of stories about the poor care provided by the NHS. There was a religious figure leading the charge on a media show quoting the wider media as the font of accurate comment about the quality of care in our NHS.

    I wrote my blog about Sophie’s excellent care as one small antidote to the endemic grizzling of the media in this country as they pick at the jewel that is our National Health Service. Yes, there are pockets of poor practice. Yes, things can be better. Yes, some organisations, some teams and some individuals should be improved or removed. And yet, sniping at the NHS from a default position of disapproving yet un-informed criticism really undermines those working in our NHS.

    Recognition, engagement and pride are more powerful motivators for the delivery of excellent care than sideline sniping from a media vested in stirring up disappointment. Don’t get me wrong – I want to expose poor practice and raise standards too. But I want a balanced view that also celebrates the amazing service delivered every day by those working in an NHS that touches our lives at times of basic human need, when care and compassion are what matter most.

  17. Whole heartedly agree. We have recently had a similar discussion within our trust.
    Why on earth do the media feel the need to destroy the NHS. More importantly why are we sitting back and allowing it!

  18. Thanks Chris for sharing your personal story; as a mother of four, it is very heartwarming to read. As a nurse, it reinforces why I chose nursing as a career and the NHS as the place to work.
    All the best to you, Sophie and your family.

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