Waiting, impotence and wilfully ignoring… in pursuit of #JusticeforLB

I’m not very good at waiting. I’m a new idea a minute, leap to action and just try and get on with something, anything to avoid the inertia kinda gal.

This has proved incredibly challenging at many points in my life. It’s almost three years to the day since my Dad died and his parting gift to us all was a long, very long death. I spent many minutes that probably cumulatively became hours willing my Dad to give in to the inevitable when it first became apparent he was dying. I like to think he was toying with us a little (which would have been in keeping with his character) but he defied all estimates and took a long two weeks to die, in his own good time. By which time I like to believe I’d stopped fretting and accepted that it was his choice to make. 

I think it’s Buddhism that teaches that something will keep presenting itself until you learn to accept it or let go.

So in that vein I’ve been trying to frame the last six months to a year as a learning and development opportunity, ever since I agreed to represent Sara and Rich and LB’s family on two independent investigations. The continual waiting and the slow, so painfully slow, almost imperceptible turn of the wheels of Justice requires a degree of patience that destroys my soul. I’m working on my impatience and my impulsiveness and consider it a huge achievement that I’ve not given in to the temptation to stop playing by the rules.

The Mazars review of all deaths of those using mental health and learning disability services at Southern Health was initially due out before Connor’s inquest. An extended scope meant this was always a big ask and it was agreed that it would be published after the inquest.

Except of course these timescales didn’t take account of the game playing and strategising of the Sloves as they tried (and failed) to extend exponentially the factual accuracy timescales. In the meantime further checking and delays have emerged and now, over a month post LB’s inquest, we are still waiting.

The waiting destroys me, as I’ve said, it eats away at my soul. This week however I’ve reached a new level of utter disempowerment and impotence, all at the hands of NHS England who don’t appear to be able to answer a straight question – when is the review likely to be published?

You see I take my duties as family rep rather seriously and when I planned the break I’m about to take (and my house is occupied for anyone who thought they’d take advantage of my absence). It was, to be honest it is, beyond comprehension that Mazars would not be published by this point.

This break was meant to be that, a chance to get away from everything and recharge but I’m now left worrying and wondering and all of that is made worse by not getting a straight answer. Not even being told that it is still not known (how can it still be so vague?) 

If anyone reading this is involved with patient or family involvement please, please, please treat people as you’d like to be treated. Don’t wilfully ignore questions or requests, don’t send partial responses because you’re afraid to commit and get something wrong and please don’t think that the £150 NHS England engagement day rate for face to face meetings is anything but an absolute insult. What of all the emotional labour and the phone calls and emails and energy spent while waiting for the prevaricating to end. I am not employed to make things better when the NHS breaks down, if you take a salary from them you are. 

We are not equal. I am not valued.

The intentional and wilful ignoring of my question causes further harm and damages brittle relationships; as ever with the NHS system it drives people to their breaking point.

So please can you just answer the bloody question or better still publish the bloody report. 

 

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