What can it be like to lose the life of a loved one to an institution?

Clinical care is currently running the risk of burying its head in the sand of less than adequate regulators, and being dehumanised in a swathe of bureaucracy.

It struck me recently that the 6Cs of nursing, which arose from NHS England’s “Compassion in practice”, can be, to some extent, applied to patients as well as clinicians.

 

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The 6Cs are: care, compassion, competence, communication, courage, and commitment.

One of my issues is that, while the 6Cs are elegantly branded and themselves slickly marketed, they can, at worst, trivialise what are important issues for the entire health and social service. The issues are inherently more complex than might first appear.

I’m not one of the brigade who believes that everything in healthcare can be measured. One of the problems I have with the adage, ‘If you value it, measure it’, is that you can do inadvertent damage by measuring the wrong ‘key performance indicators’, or skew the discussion unfairly in a particular way.

Arguably, the 6Cs are the sorts of things which ‘you recognise when you see it’, and the same sort of thing can be said for some long term conditions such as dementia and frailty. But merely eyeballing the issues may be necessary but not sufficient. What is the right level of a competence? What would you rate as ‘good enough’ in the standard of clinical care you’d expect from a Specialist Registrar, such as #BawaGarba?

As it happens, I have been thinking a lot about how ‘courage’ applies to healthcare, not least because I have just written a book, jointly and equally with Rebecca Myers. We both had complementary but not identical views about courage in healthcare, from the perspectives of being a service user/patient, leader, manager or clinician.

As it happens, I am still not entirely sure of what the exact definition of courage is. What I do know is that the #BawaGarba case rumbled on, such that the GMC felt it appropriate to bend over backwards in removing a senior junior Doctor from the register of medical professionals. That was courageous, as it was a pretty ubiquitously unpopular decision in the light of organisational learning and ‘just culture’. One can only also imagine the huge courage needed to the parents of the child, or #BawaGarba herself in the face of a media and regulatory lynching.

When writing this book, I myself had substantial health problems. During last year, during the stress of my personal independence payment being refused despite being clearly physically disabled with mobility problems. I had a haemorrhage in my eye.

This meant my visual acuity went from cloudy, to ‘counting fingers’ to only seeing light, over a period of months.

I had an eye operation on January 25th 2018, but unfortunately I soon afterwards had a post-operative bleed, which meant my vision rapidly worsened. I then had a ‘repeat’ operation, called a vitrectomy, which cleared up my vision, meaning I can type this piece on my laptop computer with the affected eye without any difficulty.

Whenever I would hear people who are blind on LBC talking about their disability, I’d think, ‘That could be me’. In fact, despite being on the medical register currently, I had never viewed the patient experience through that prism. But it is very educational, if you believe me like me that the NHS should be comprehensive, universally available and free at the point of need or use.

Because I could not see, I actually fell over on a book in February 2018, which meant I had been rushed into hospital in the back of an ambulance inhaling Entonox like a pregnant mother in labour pains. I had dislocated my shoulder, and was in agony. At 2 am, the Specialist Registrar could not reduce the dislocated humerus bone back into joint, and at 9 am I was in theatre, under a general anaesthetic (which I had never had before).

At roughly the same time, my mum was admitted to hospital, living with dementia, but experiencing a horrific delirium. This is an emotional experience which will have a lasting effect for me forever.

All of these ‘patient experiences’ were deeply emotional. They’re not the sort of experiences which would be box office in a conference, such as promoting the joys of self management, or saying how wonderful the ‘dementia friendly communities’ kite mark is.

But nearly going blind mattered to me. Being in agony due to my shoulder (still healing) made me realise my own vulnerability. And when I used to go into hospital to see mum asleep (hypoactive delirium), I would wonder when or if she would ever wake up; she did, and massively improved when discharged out of hospital.

About 11 years ago, I suffered a cardiac arrest, and then spent six weeks in a coma due to meningitis. Actually, it brought my alcohol dependence syndrome to an end, but those were definitely the worst days of my life (and had a worse effect on others.) The thing is, I had no ‘feeling’ for what it was like to have any of these conditions as a junior doctor or medical student.

Whilst I do not subscribe to the idea that you have to be living with a condition to practise in it clinically, I think there are advantages of having sympathy, even if not complete empathy, with a patient’s experience as a doctor. Kay Redfield Jamieson, professor of psychiatry at John Hopkins, has openly written and spoken about her experiences with bipolar affective disorder.

So when I read terms such as ‘affected by dementia’, I find it quite trite to be honest. It’s really marketing. I could be ‘affected by dementia’ in the same way I am affected by herpes labialise, a cold sore, on the top of my lip, or ‘affected by a verruca on my big toe’.

Being both a clinician and a patient/service user is a highly emotional experience, and one thing I learnt from doing this book, essentially which I learned from Rebecca, is that courage is not solely a personal trait, as a lot depends on your vulnerability and strength within the rest of the system.

Take, for example, the courage Dr Chris Day must have had in challenging whistleblowing protection for patient safety, essentially himself as a whistleblower, putting him at total odds with the medical profession, who as usual protected themselves but not Day. The corpses of careers of people within health and social care are, unfortunately, widespread, and, if ‘lessons have been learned’, things can only get better?

Courage, like the other 6Cs, may trip off the tongue, but certainly does merit scrutiny. Whilst it can be very positive, giving you the strength to face an operation, it is telling you might need to have extraordinary amounts of it waiting for example on a hospital trolley in a corridor with chest pain.

 

@dr_shibley

 

 

 

 

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