Happy Birthday Lubylicious

On the 20th March  2004, my lovely little Luca was born.  We hadn’t planned on calling him Luca – we had no name for him – but he had a big pudgy nose and looked like a Bruno.  But to me Bruno is a dog’s name – so we needed something else… It came down to Hugo and Luca – with Luca being the decision (on the 40th day after his birth!)

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He was always cool, always mummy’s baby – always laid back… with hindsight, probably too laid back – in 2006 just after his second birthday he was given a preliminary diagnosis of autism, with the final confirmation coming in the July.  And so what – lots of people are autistic – what’s the biggie?  I don’t normally write blogs about Lu – why would I? I fill Facebook with photographs of him – and spend every day with him – that’s enough for me…  So why now? Well tomorrow is his 10th birthday, so that’s a good starting reason – but it’s also Day 1 of #107days.  What is #107days?

On March 19th last year (Day Zero), someone else’s Lubylicious – a beautiful 18 year old called Connor Sparrowhawk – was admitted to an NHS assessment unit.  You see Connor (LB – Laughing Boy – to his family and friends) was autistic, he also had epilepsy; he was being being assessed to help develop a support and care plan.  It was a small unit, with plenty of staff – but as is often the case his parents were not involved in developing his day to day care in the unit, his epilepsy was not properly risk assessed and the staff didn’t have adequate epilepsy training. On July 4th, 2013 he was left unattended in the bath, suffered from a fit and drowned. 107 days after he was admitted.

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Southern Health (the Trust in charge of the unit) initially said his death was due to natural causes.  I didn’t know that drowning was ever considered natural causes!  Less than two months later after an inspection the unit was closed – it failed on all 10 of the criteria that it was inspected on.  And last month an independent inquiry, that Connor’s family had to fight for, found that Connor’s death was preventable. Note that Connor’s family, Connor’s GRIEVING family had to FIGHT for that independent inquiry!

This is what we do to learning disabled people in this country. In the twenty first century. We stick them in awful placements (sometimes at extraordinary cost – his place in the unit cost £3500 a week!) with inadequate care – though I don’t think there was ANY care adequate, inadequate or otherwise… seems more like neglect to me.  Remember this was a specialised NHS facility that was supposed to care for an assess LB, it wasn’t a prison. It wasn’t a detention centre – it was a hospital.  Let’s look up the word “care” in the dictionary:

noun

  1. the provision of what is necessary for the health, welfare, maintenance, and protection of someone or something.
    “the care of the elderly”
  2. serious attention or consideration applied to doing something correctly or to avoid damage or risk.

verb

  1. feel concern or interest; attach importance to something.
    “they don’t care about human life”
  2. look after and provide for the needs of.
    “he has numerous animals to care for”

Now let’s consider that Connor Sparrowhawk, 18, someone’s son, someone’s brother, someone’s friend drowned in a bath. In a hospital. In Great Britain. In 2013.

Now consider, Luca, 10 today. My son, Dryden’s brother, Kieran’s friend…  One day he’ll be 18. One day he might be in an assessment centre – that is now one of my greatest fears.  My beautiful boy will always need care. Just like Connor did.  The question is will he get it? Even if he doesn’t have to go into an assessment centre – James and I won’t live for ever.

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Happy birthday Luca. Goodnight Connor.

Remember #107days and #JusticeForLB – get involved, our vulnerable citizens need you.

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About

I run a film production company in Gatesheed, UK. I have two boys and one American husband. I love NUFC, the Red Sox and Pats. I rant A LOT.

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One comment on “Happy Birthday Lubylicious
  1. […] his Mum @fnafilms took Luca bowling and he kicked the ball down the lane. What a dude. You can read more about Luca in this special birthday blog post his Mum has […]

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