David Sissling, a long serving NHS chief executive, suffered a sub-arachnoid brain haemorrhage in September last year. He shares his experience of NHS care, support and recovery

It’s described as a “thunderclap” headache, but this really doesn’t do it justice. Try “baseball bat across the back of the skull” headache. It happened as I drove home from watching a rugby match in Leicester one late Saturday afternoon. It was without any warning (all clear at recent health check) and terrifying.

I was lucky on two counts – firstly, just five minutes from home and secondly, fully alert with no loss of consciousness or faculties. I drove home confused, anxious and with the intention – very British Male – of lying down for a couple of hours to “let it pass”.

More tests and clear communication about what was happening and what they thought might be wrong

“There’s something very wrong in my head”. My wife Caroline’s initial reaction was one of relief… after years of denial I was finally accepting what she had been saying for so long. But then one of realisation … and action.

She called for an ambulance, which arrived in our tiny village in just a few minutes. The paramedics were thorough and, while they didn’t suspect a haemorrhage, they thought it sufficiently serious to merit taking me to accident and emergency. But not with a blue light.

So slow and steady down country roads. There are words to describe the experience of being in an ambulance with a brain bleed as it goes over a cattle grid at 5 mph. However, they are not to share with the refined readership of the HSJ!

On arrival at the Leicester Royal Infirmary things happened pretty much out of the text book – assessment, resus, CT scan, consultant review and “we’re pretty certain it’s a haemorrhage – you need to go to the Neuro Unit in Nottingham”.

I had a growing appreciation that it was serious, then very serious, then… so hurried calls and texts to family, friends and colleagues. This time it was a blue light with arrival at the Neuroscience unit at the Queen’s Medical Centre just after midnight.

More tests and clear communication about what was happening and what they thought might be wrong. Very scary, culminating in a hurried trip to theatre (“Can we wait until my sons arrive from London?” ”No. I’m afraid we have to proceed now”) with a full consultant team by mid-morning Sunday.

Good news! A vein, not an artery. Not very common and likely to make a full recovery. But “lots of blood up there so you may well get bad headaches” – they were right.

Outstanding care

I was discharged a week or so later, immensely grateful for the outstanding care I received. Compassionate, supportive and backed by specialist expertise. Indeed the care provided subsequently – through follow-up with the neurosurgeon and from my GP, has consistently been excellent.

One observation I would make is the lack of specialist psychological support

It was, in fact, my GP who, three months on, advised me I was experiencing “Analgesia-induced headaches” and told me to stop taking the painkillers. Not sure I still understand this… how can painkillers cause pain? Still, I did as suggested and, yes, the headaches slowly disappeared. The medical recovery has continued well, although I still suffer from fatigue, apparently very common in those who have suffered a brain injury.

The psychological journey has been a rollercoaster. After the initial trauma and pre-occupation with the demands of medical treatment, I started trying to understand what had happened and the impact on me, now and for the future. I felt a range of emotions: anger, guilt, confusion, loss, relief and anxiety.

I believe many recovering from strokes or brain injuries experience levels of depression and I can well understand why. The adjustments that have to be made are immense, with little prospect of return to the pre-event self.

One observation I would make is the lack of specialist psychological support. After some months, I was referred by the occupational health doctor to a psychologist. Unfortunately, his specialism was forensic psychology and the session did not go well – I’m still not sure if he was expecting a confession! I found my own way to a neuropsychologist whose insight and advice has been invaluable – particularly to be “kinder to myself”.

One of the most profoundly helpful aspects in my path to recovery (and the reason I particularly wanted to write this piece) has been the support I received from my family and NHS colleagues. I have been humbled by the kindness and consideration of so many. Colleagues, past and present, made contact to offer their best wishes and in some cases to assume Florence Nightingale-like roles.

And this support has extended to my occupational rehabilitation. I decided early in the New Year that I wanted to return to work in some capacity. Partly because I felt I still had a contribution to make, partly because I felt I needed to work and partly because of a mind-numbing overindulgence in daytime TV!

Clinicians are at the heart of the real business of the NHS and we need to find ways to better draw on their expertise and unique ability to improve care delivery

However, I was not sure what I could do. I started a coaching course and returned to part-time work in April with the assistance of NHS Improvement and the National Institute for Health and Care Excellence – for whom I’m doing some project work – and my trust.

After a couple of months, taking stock of my health and wellbeing, it was clear that a return to work as a chief executive was not possible and with some sadness, I resigned. My future work plans are just developing – I do want to be active but at a level and in areas that give me the right balance between work and my family life.

Finally, a few reflections. I have worked in the NHS for 25 years with 20 of these as chief executive. It has been a privilege to serve in these roles. I look back with great pride at much of what I achieved but regret some of the “if I had my time again” moments – which normally occurred when I was led or distracted by something other than my values.

I have worked with tremendous colleagues – in the NHS, the Civil Service and in the world of political leadership. It has been varied; national and system leadership, developing integrated systems, complex service change (yes, it can be done!) and turnaround of a challenged trust.

If I had a couple of wishes… firstly, that we forge a new relationship with our clinicians and particularly our doctors. They are at the heart of the real business of the NHS and we need to find ways to better draw on their expertise and unique ability to improve care delivery. And secondly, that we better support our NHS leaders – in their development and as they carry out their job in the most difficult circumstances.

It’s now nearly a year on from the day I suffered the brain injury. It’s certainly been turbulent and literally life-changing. My belief in human nature, and indeed in the NHS, has been strengthened and I now look forward to my future years with a sense of gratitude, perspective and anticipation.