Is this valid enough for you?

We all need validation for the choices and decisions we make. It particularly helps when you’re feeling out of your depth and a bit fragile.  You need to know that your rather expensive new haircut was a great choice and makes you look younger.  You want to be reassured that leaving your job without another to go to was completely the right thing to do.  And no, your bum does most definitely not look big in that great new dress. 

When your choices are validated you feel accepted, calmer, happier and reassured.  That strident little voice of insecurity, uncertainty and fear within you is silenced.  But the need for validation goes far beyond a haircut or a new dress – it can be the difference between you feeling justified in your concerns, listened to and part of actions taken as a result, or feeling ridiculous, out of your depth and a fool.  Are you wasting someone else’s valuable (clearly more valuable than your own) time with your wittering nonsense?  How could you possibly know as much, or more, than a learned specialist with letters after their name?  And so it begins.  The poisonous withholding of validation in order to weaken your resolve, undermine your beliefs and devalue your case. 

Looking back, I can see that this lack of validation began way before the death of my precious boy.  As soon as we reached post 19 transition it was like hitting a wall which was made of people whose role apparently, was to pour scorn on all our concerns and make us feel like inconsequential, time wasting idiots.  I stopped being a person and became “Mum” and worse than that, the red file they kept showed I was that worst of all things, a pushy mum, a needy mum, a mum who wouldn’t shut up and go away.  Clearly I was deluded and in this they weren’t far off the mark, as I see now that only a deluded mother would think that Social Services and the Local Authority were there to help her get the best possible care outcome for her child. 

At Nico’s new supported living home it was the same.  Within two weeks the manager told us we were upsetting the staff by questioning the way they cared for my son.  He made it very clear that our concerns were not only baseless, but of no interest to anyone who worked there, especially him.  We would put up, shut up and behave.  In addition, what my son wanted or wished for was clearly so far beyond validation I have no word for it.  Now I see clearly that when everyday concerns are not validated, the care given can only end in one way and that way is not good.

After Nico’s death our anguish was made so much worse by the way the Trust made us feel as if Nico’s death and our suffering was just an extension of the trying and ridiculous parents we had been before.  If they had insisted on supporting us as we made the awful journey together to discover how and why Nico had died, everything might have had a very different outcome.  By doing that and acting as if our pain mattered to them, we would have felt as if my son’s life was of real value to them and his death brought them as much pain as it did for us.

I see it time and time again.  I see the harm this, oh so common, treatment inflicts on bereaved families.  It begins with that gentle pushing away of your version of events, that slight incline of the head, the patronising tone of voice, the verbal equivalent of patting you on the head.  Little by little, your voice, your concerns and your questions are devalued.  Your refusal to see their version as the only valid version of events means eventually, they become more irritated with you.  If you have the temerity to get yourself a good advocate or legal representation – then the push back will really begin.  You’ll go from being devalued to being the enemy.  You’ll go from receiving lack of validation to being a selfish and threatening family who are clearly in the wrong and need to be side-lined and closed down before you get too strident.

At some point between the death, the inquest and the investigation it becomes clear that given a choice between listening to the family’s concerns (and maybe acting on them), or steamrollering them out of the way, the NHS Trust, private provider, Social Services, local CQC and the Local Authorities are already firmly locked into option two.  Seemingly it’s the only option their management offers them.  As the family’s evidence becomes devalued, so the family feels devalued and they start to feel that catalyst, the death of their much-loved family member, is being shrunk down in importance too.   

Parity of evidence means seeing the evidence given by the family as crucial.  Parity of evidence means treating all specialists involved in the case as equal, and so treating their evidence as equal.  It’s rare that the professional specialists have a long-term relationship with the deceased person.  It’s normal that the family does.  The family is that “thin red line” which joins together years of meetings, phone calls, emails and hospital visits.  They are often the only ones who know everything, who remember everything and often, kept everything.  And yet it’s still so common for professionals to refuse to see the family as specialists in the field of their family member.  So often that carefully kept and crucial evidence supplied by the family is side-lined and even if the professionals offer no evidence, somehow their evidence is of more value. Professionals who never met my son knew more than I did – apparently.  But then of course, if they were to treat me as a specialist in the field of Nico, then they would have no option other than to validate my evidence.  

This poisonous drip, drip of devaluation wrecks lives.  It undermines love and destroys hope when families are at their most vulnerable. It’s shameful.  It results in severe mental health problems – in grieving that can’t heal.  It helps no-one, improves nothing.  It’s time to stop this before the next death and before the next family destroyed by this poison. 

Is that valid enough for you?

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