When I was pregnant with my first child, I didn't expect to gain a new insight into the aspects of quality that matter to parents of a sick infant - or the significance of non-clinical detail.
During my pregnancy I had, as an NHS manager, received numerous comments from colleagues at work about my forthcoming opportunity to test maternity services. Little did we know then that I would shortly be gaining experience of a rather different kind.
Although life had started well for Patrick, things started to go downhill quickly. Following increasingly slow weight gain, and the identification of a heart murmur by the GP, the truth emerged when my son was three months old: he had major congenital heart defects.
During the next year, we spent much of our time living at the children's hospital where Patrick had closed and open-heart surgery, spending a total of several weeks in intensive care and several months on the cardiac ward. On more than one occasion we did not know whether our son would live or die, and met other parents to whom the worst did happen.
As a parent, this period was acutely stressful; as an NHS manager, it was enlightening. The revelation came not from finding that the quality of clinical care was of the greatest importance to us (this I could have guessed) but from realising the vital nature of the non-clinical - and in many cases apparently quite trivial - aspects of the hospital experience.
Despite being a reasonably calm and easy-going person, I found that what would normally have been minor irritants became sources of much more major stress. Equally, small creature comforts and acts of kindness were disproportionately therapeutic.
The kindness of the nurse who took the time to search through bags of dirty bed linen for my son's favourite soft toy that had been accidentally removed with a vomit-stained sheet, or who sat and quietly held my hand when my son one day stopped breathing; the homely, nonclinical smell and the peace and quiet of modern parents' accommodation, where we could rest without the constant cry of babies, relax in a hot bath, and cook a meal in clean and spacious surroundings; and the cold drinks machine - these were some of the small details that made a difference for us.
On the down side, I remember being moved to tears of anger and frustration by the inflexibility of the 'milk kitchen', which, among various minor but vastly upsetting misdemeanours, failed regularly to deliver Patrick's feeds at a time that would avoid him working himself up into a hunger-induced frenzy.
This made it even more likely than usual that, once given, the milk would not stay put in his stomach, so fuelling my (in hindsight) obsessive interest in his daily weight-gain.
Despite all their kindness and good intentions, the nurses had neither the time nor the authority to make changes to a system that had no basis in logic or common sense. A similar situation involved the ward's antiquated radiators blazing out heat on a stifling summer's day, leading to discomfort for all, and large numbers of babies - including Patrick, whose tiny blood vessels were by now almost completely inaccessible - requiring time-consuming and distressing blood tests to check that their sudden rise in temperature was not due to infection.
The nurses had no control over the situation, being unable to switch off the heating themselves but instead having to call 'maintenance', which was for some reason unable to send anyone for days. Finally, at the end of my tether, I marched down to the office of the chief executive (whom I knew) and, finding her otherwise engaged, wrote a letter explaining the situation. To her credit, the problem was solved in next to no time.
Patrick is today a happy, healthy four-year-old.
Professionally, the experience has been educative. I will always be grateful for the outstanding care that Patrick received, and I embrace clinical governance if it will ensure that everyone receives the same privilege. But in the slog to assure clinical quality, let us not forget the non-clinical aspects of quality.
So many people's satisfaction or dissatisfaction with the NHS derives from apparently insignificant things that may so easily be overlooked - hospital catering, lost property procedures and staff attitudes, to name just a few.When you are in a corner, the insignificant becomes significant in a way that those in less difficult circumstances may be unable to imagine.
Sarah Carr was an NHS manager and is now an independent consultant specialising in publications for the NHS.
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