Many of us will have grown up knowing variations of the playground rhyme
Patience is a virtue, virtue is a grace, and grace is a little girl who would not wash her face (Dick King-Smith)
I don't recall ever considering what this really meant, but the saying has sprung to mind today as I am struggling with patience.
Patience is apparently a quality I am going to need to hone as I continue to engage with the NHS and move from the superlatively brilliant delivery of emergency medicine into a more prosaic but convoluted pathway that will hopefully, someday soon, see me treated for Stage 3 Bowel cancer.
Over the years, parenthood and travelling have improved my patience somewhat. There is nothing like hours sat next to a potty desperately willing your offspring to produce something...anything, or waiting by a dusty roadside in the arse-end-of-nowhere in Africa or South-Amercia for a bus that may never come, to test your temperament in the days before digital diversions like the iPhone and iPad became commonplace.
In 2005 in Zambia, I once boarded a train on the Tazara line that was scheduled to depart on a Tuesday and take two days to reach Tanzania. When originally conceived in the 1970s with Chinese money and might, it made several trips a day in each direction, efficient and cheap travel for the masses. Sadly it has fallen prey to disrepair and the laissez-faire culture of the continent. When I travelled, the then-weekly train did not, in fact, leave until Thursday and could take a week...only no one knew, and mostly no one cared, so you had to get into that mindset and out of a traditional Western one before being rendered clinically insane.
Even given all of that, I can still sense my subconscious beating a little drum of impatience. Like the equivalent of a tapping foot, or fingernails drumming on a table top. Quiet external signs of the frustration that is building inside.
In our consumer society our demands and expectations are consistently growing. If delivery is not next day I may not purchase from your company. If you don't reply to my email within 24 hours I will be unimpressed. If you keep me waiting on hold, delay my train, overbook my flight there will be repercussions and often anger either in person or on social media.
My husband has done fantastic work in recent years helping me moderate my inner, perhaps childish and volatile sensibilities. He has taught me that courtesy, calm and disappointment are far more powerful weapons to achieving the desired result than foot-stamping, swearing and tears. Well done him. Vital groundwork that will serve me well in the months to come.
The NHS is fantastic in so many ways. I already owe some of its staff my life. The surgical team at St. George's and the nurses, registrars, porters and tea-ladies who supported me afterwards all deserve medals in my book. BUT...and this is a reasonably big BUT as an organisation not the most effective and efficient at times. We all know it's true, so let's not beat around the bush.
All the stories of lost clinical notes, things not turning up on time, delays issuing prescriptions. These stories are all true and there are millions of anecdotes pertaining to the frustrations of the system and the pain it sometimes causes. This is not necessarily about negligence, it's about inefficiency.
Let's be honest, it is a behemoth of an organisation. Sayings speak of the challenges slowing a juggernaut down, of turning a tanker around...but the NHS is bigger than that. It's a monster in terms of debts, complexity and number of employees. I don't want to say the word 'Titantic' as I hope it will never share such a fate, but size-wise, it's a similar and unique beast.
Currently I'm playing the waiting game. There is no more I can do to try and ensure that my notes, pathology report, CT scans, MDT recommendation and physical histology slides make it from St George's in London to Shrewsbury, Shropshire in time for a further MDT meeting on Monday.
For the clinicians I suspect the repercussions if this 'black box' feat into which no one can give me much insight, are not important. Medically there is no risk. My name will simply go on the list for discussion the following week, when things will 'hopefully' have turned up.
But that's not how it feels to me. It means me waiting another week to know my fate. Another week lost before progressing to chemo and an oncologist. Clinically my expectations have been well managed, I'm still recovering from surgery and not eligible for chemo yet...but that doesn't change the mental and psychological impact of waiting and of uncertainty.
That uncertainty creates doubt and fear. The feeling of impotence is unpleasant, especially for someone who has always liked to feel 'in control.' In the days where supermarkets and retailers can process an order and deliver it within hours, where you can request a private GP consultation online and have a prescription and the drugs sent to your local post office in 24 hours, and where the internet and social media offer immediate advice and answers to almost any challenge the world may throw at you...why oh why is the NHS still struggling with basic logistics?
Having worked in pharma for years I know that the medical area is fraught with legal hurdles and restrictions, and rightly so. When things go wrong, lives really are at stake. This is no exaggeration and I would not wish it any other way.
HOWEVER, having worked in several big corporates, and indeed in smaller organisations, it seems ludicrous to me that there is a dependence on paper and the postal service when digital technology seems to serve the rest of the universe quite well, in healthcare and beyond. If in Kenya I can pay my taxi driver by text (mPesa), and if the couriers and taxi service practically allow me to GPS my delivery minute by minute, then please can someone get the NHS on track for my mental wellbeing as well as that of many others? Surely mental health is just as important to the treatment process as the medication itself.
Maybe I'm being unkind and unjust and all will work out well on Monday morning. But I won't know, and maybe no one will tell me until Tuesday. And even if it works out this time I've been warned to expect frustrations around the corner; turning up for chemo to find the drugs have not been countersigned and have not arrived from the pharmacy, the unexpected hurdles as my body reacts badly and chemo has to been postponed. Some of these will be my 'fault', some will be inefficiencies of the system. Either way it's going to be challenge for someone with my background and temperament. I meditate already, but I think I better up my game. If anyone has any tips, I'm all ears, and maybe you could help the NHS whilst you're at it?
If you'd like to read more about my journey from normality to cancer diagnosis and beyond, but please see my blog as I try to channel positivity and gratitude throughout the months ahead.
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