When do we stop accepting the unacceptable?

Guest Blog*  reflecting on LeDeR and Professional Care Workers week 1 – 4 September

I am sitting here reading the latest LeDeR findings. Shocked that out of the 1191 deaths reported, only just over 100 were reviewed despite government stating all would be investigated.

When will the government learn? When will everyone – not just the learning disability community – sit up, take notice and feel our outrage?

How many more people will have to die needlessly for this to happen? People who rely on good care and support that will prevent poor health, that will prevent mental health crises so often labelled as ’challenging behaviour’.

I read the media coverage of the passing of Richard Handley in 2012 and felt sickened. Promise me you will read about Richard. I did not know him, but reading of his death, his lingering agony, must surely torture everyone who reads of it.

Richard died in 2012. Yet still it continues.

Just try to imagine what it would be like trying to get someone to understand the sheer agony you were in if you could not communicate or understand what is happening within your body.

Imagine yourself endlessly tugging at your support staff, screaming at them, throwing something at them because you are desperate, in pain. Saying in the only way you know how “I am in agony, help me”.

As a parent of beloved sons and a daughter (I am a mother and carer for over thirty years) I imagine this all too well. It haunts my waking hours and my dreams. This is the truth, the reality, behind statistics in the LeDeR findings.

You see that is my other torture. If we do not address this care and support workforce crisis we will see even more adults with a learning disability dying or being torn from their community and placed in hospital and secure units. Their life written off by the lack of a good, caring workforce who are ALL adequately recognised, knowledgeable, paid, trained and valued.

I am a mother. For over thirty years my children have been healthy, happy, safe, secure. Living; and enjoying the sights and smells of their own homes and in the heart of their community.

But I, like so many devoted parents, live with daily sorrow of who will care, keep my child well and keep joy in their life when we are no longer alive.

These endless reports, findings, Richard’s passing along with so many others, so many lessons that should have been learnt. They give me little hope that that life will be happy, healthy, safe, secure for our children when we are gone unless we come together and address the issues in the social care workforce.

My plea is to create a political working party on behalf of, and with, adults with severe learning disability. To create a logo that will be a hallmark of excellent care and understanding. For no one else to die in vain through lack of care, lack of understanding or just plain indifference.

Let’s do this together. Let’s find new ways of getting our voices heard. Let’s lead the change we so desperately need to see.

  • This guest blogger is a family carer and member of Learning Disability England who wishes to remain anonymous at this time.
  • If you are interested in the blogger’s plea for a political working party or a logo and hallmark of excellence please let us know: info@LDEngland.org.uk