I drive. We hold hands. We sing. We connect. I blow raspberries on the back of her hand. She laughs. We feel free. That’s us on the back-roads of Fermanagh when I am home.

You might see us, smiling, singing Dolly Parton songs. Arney, Boho, Derrygonnelly, Garrison, Belcoo. The Ancient forests. The lakes. The thatched cottages. The stone bridges and waterfalls. Spellbinding scenes of silent beauty.

And two sisters. Getting lost on these roads. Unified on a cellular level.  These journeys are some of the most cherished moments I have in my life.  My other journeys, for accountability have been the complete antithesis of beautiful. ​

They have been so damaging to my health. Worry lines, newly grey hairs, muscles clenched and a tangible powerlessness in my bones.

The powerlessness I feel is the worst, but not for me, for my sister. I feel this strong compulsion to protect her, given my skills and her total lack of ability to defend herself.  That juxtaposition haunts me.

What can I do? What can I do? Like I can never do enough to equal things out for the two of us.  To give her an equal playing field. And yet I simply cannot help her with this injustice.

Knowing that the funding for vital services and support which she was entitled to, but which was taken from her historically, won’t be paid back to her in the future, is a hard pill to swallow.  The unused respite over the Covid period which our family could not use, but cannot be carried into the next year.  That money too.

Whatever the sum is. The sum is not the full issue. It’s the financial abuse. The gesture. The exploiting of her weakness. The nonchalance, the indifference. The contempt flung at me, her ‘defender.

What I have learned from this system is that you can care but you must toe the line.  You can care but you must “control yourself” to fit in with the rhythm these health bodies work at and their mechanisms.  And in the process of “controlling yourself”, you lose.

You can care but you must know your limits, or rather, their limits.  You must respect the very limits, which, if crossed, would ensure things were fair, accountable and functional.

So, I ask myself, why are we collectively stopping short of these limits? Who benefits from these limits being in place?  And how can we move beyond these limits which invariably protect the institutions?

In 2021 the Department for Health consulted on policy proposals to enact a statutory Duty of Candour in NI*, one of the key recommendations arising out of the Hyponatremia-Related Deaths Inquiry.

Such a duty would create a legal responsibility for all healthcare staff and organisations to be honest when things go wrong.  This duty would not just apply to being open and honest with patients but also within organisations in their reporting adverse incidents or near misses that may have led to harm.

Based on past experience it is hard to be optimistic, however, the proposed legislation does outline where things should be heading.  This is an unpleasant journey, full of pot holes and dead ends. But we travel in hope.

* Read more about the proposed statutory Duty of Candour:

‘Public Consultation on the introduction of a statutory Duty of Candour in Northern Ireland’, August 2021

‘Call for Stormont to reject BMA and GMC stance on NI duty of candour’, September 2021

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