Grief and Justice!

Its nine months now since Bob died and the grieving continues. It’s not as intense as the earlier weeks and months. The nights when I sob uncontrollably into my pillow are less frequent than they were and I’ve even started to go some time without crying at all (not long, but I did go a whole week recently….progress!). The pain is still there, I’m not sure it will ever go away but it is getting slightly easier to bear. I’m beginning to accept that while I’ll always miss him and never get over losing him I have no choice but to learn to live without him. I’m starting to smile, remember the good times and be glad that I had him in my life….I guess I’m reaching the “acceptance stage of grief”!

However, while dealing…or trying to deal with my own grief I’ve been constantly thinking of and trying to support a dear friend, one of my life raft friends. One of the sweetest, kindest, funniest, loveliest people you could ever wish to meet by the way! (In case you hadn’t already guessed this from her amazing blog)

Over the last (almost) eight months I’ve witnessed the cruel twists and turns of events that have made her and her family’s grieving so much more agonising and intense. And, as preventable as his death was, so has been (and continues to be) the subsequent treatment by the NHS Trust responsible for his death.

Since the “preventable” death of her lovely boy just six weeks after Bob died she has had to deal with so much more than I have. I have been allowed to wallow in my grief and loss but she (and the rest of her family) have had no such “luxury”.

Those entrusted to assess and treat him, with a duty of care not only failed on all counts, resulting in his death, but have subsequently treated the family with a crass disregard and lack of compassion… bordering on torture. Culminating, with a torturous delay in publishing the report into his death. (Promised on Friday for yesterday (24th Feb) but not published until 5.45pm)

I struggled to do anything yesterday awaiting its publication…anger building hour by hour, so I can only begin to imagine what it’s done to them.

As a parent, as someone who works with families (with OxFSN), and as someone who works as a Family Consultant for a Support Provider (Dimensions) I’m horrified and astonished at such a demonstration of HOW NOT TO WORK WITH/TREAT FAMILIES. …Actually strike that…as a human being I’m horrified and astonished. Surely people in these positions, whether the Trust staff, senior management or lawyers (and let’s not forget the Commissioners in all this!) have families too? Surely they have some basic compassion! Surely they can see the pain and distress they have caused, and are adding to by their behaviour.

You’d think, wouldn’t you?…. but so it’s gone on!… even to the point of a letter being sent out addressed to Connor on Friday last week…an error so astonishingly grave it left even me “gobsmacked!”

The Trust will inevitably talk about “lessons learned”  it’s difficult to even think about how and why lessons about leaving a person with learning disabilities and epilepsy in a bath, unsupervised should be lessons that needed learning in the first place…it’s basic common sense that you don’t actually need training in….(my eldest daughter understood this at age 7 years old when her 5 year old brother was having seizures)

There are however huge lessons to be learned about listening and involving families in the care of support of their relatives. There are huge lessons to be learned about the value of people with learning disabilities and the fact that their families love them whatever their ability… and there are huge lessons to be learned about the need for person centred approaches.

I hope every support provider out there learns these lessons and learns them quickly but, more than anything, right now, I hope my lovely friend and her family finally finds the time to grieve properly for their beautiful boy. Lets face it this grieving business is a tough enough gig #justiceforLB

 Gail, Guy & Connor


About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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2 Responses to Grief and Justice!

  1. Magi says:

    The events are so tragic and unbelievably cruel, and those are my feelings having never met ‘the dude!’ I can’t even touch on how it is for everyone else. Let’s hope “post” won’t be wacked before this tragedy and that lessons learned become lessons forgotten.

    • emptynestmum says:

      He was a lovely young man loved and adored by his loving family…it’s all just too hideous. And yes, totally agree…enough with the “post” this is all in the present x

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