“The dust in the corner” – Justice for Nico

Quite some time ago now I was told about another young man who died in Oxfordshire. I’ve mentioned this other tragic death in previous blogs and raised a question about it to Katrina Percy (CEO of Southern Health) at the Oxfordshire Learning Disability Partnership Board meeting a couple of months ago. I haven’t written in any detail because his mother, who I’d been in touch with through social media couldn’t face sharing his story. So battered and beaten by the experience and trauma, not only of his death but the way they have been treated by the organisation in charge of his care was she that she didn’t trust anyone and couldn’t bear to speak about it.

Over the last year she’s read the accounts of Connor’s death. She’d read Sara’s blog (which left her “in bits”). She’s seen how others have rallied to get justice for LB while at the same time attempting to carry on alone, apart from support of her close family and a few trusted friends. She has been left feeling invisible, unheard, dismissed and ignored by everyone, including and perhaps more importantly by Southern Health, the very same Trust responsible for Connor’s preventable death.

This week in an email, this mother described herself as“the dust in the corner”…HEARTBREAKING!

This week she also made the brave decision to finally be heard and has allowed me the privilege of sharing her story…

Having read the pages and pages she sent me detailing the whole story ….Where to start?

Well, let’s start where it should…with Nico, a beautiful, much loved son and brother.

I asked his mum for some pictures. Her reply….

“I have no end of photos of my beautiful boy. There are no bad photos of him and boy did he love to have his photo taken. Our most precious to us by far is the black and white as this is so completely him and takes our breath away”

 

 

 

 

 

For 21 years Nico’s parents had done everything they could to maintain his health and happiness. He attended a residential school in Oxfordshire that had provided outstanding care and education. Although the idea of residential school had been difficult for the family initially (and they’d had a battle with the High Court to get him there) they knew this was the best option for him. He was a weekly boarder and they remained very much involved in his life and just as with any family he was a much loved as any child (this should go without saying but sadly if often needs to be highlighted!) As his Mum told me…

“He continued to be very happy there, very fulfilled and stimulated.  He achieved things there that we could only have dreamt of for him.  He learned to signal clearly for “yes” and “no” to use his Big Mac button for simple requests and all types of electronic gadgets.  He cooked, he painted and he LOVED music (playing it, listening to it, watching it) and films.  They arranged for him to have a part-time voluntary work placement in the travel agents – he absolutely loved it.  He “sang” in a local choir where they loved him.  He had so many friends – he just plain loved his life and lit up every room he entered.”

In July 2010 Social Services told the family that they were stopping funding for Nico to go to the school from the following September. The reason for this is unexplained but it doesn’t take a rocket scientist to work out that this was an attempt to save money. This left the family with little time to find anywhere else. Nico was offered a “place” at a new “placement/care home/service” in Oxford but the family felt it was unsuitable. So did the provider and consequently the manager of the “care home” recommended that he didn’t go there.

The family’s experience of social services at this point was at best poor practice and at worst bullying and threatening. As someone who focuses a lot on transition to adulthood in my work I was also disgusted by a comment made by a transition care manager from adult social care informing the family “I make a point of never meeting any of the young people I transition, I find it clouds the point”.  Sighs…how can you plan support for someone if you never meet or get to know the individual properly? Clearly this wasn’t a priority and apparently the main concern throughout this devastating, sad and sorry tale is not finding appropriate care and support, not ensuring he had a good quality of life but saving money and doing it as quickly as possible.

The family set up a number of meetings and were extremely proactive in trying to find a really good place for Nico to go to.  On  the 15th October 2010 at one of these meetings Social Services told them that they intended to disregard the providers recommendations and that Nico would be removed from his school on the 30th of November and, unless they (the parents) could find a more suitable placement for him in the period between the 15th of October and 30th of November, Nico would be sent to the suggested ‘placement’  regardless.  This gave them just a few weeks to find somewhere suitable and get the staff there trained up ready to care for Nico, and to get all the equipment and therapy in place. It seemed like an impossible task.

By chance the family found another alternative. A small residential home/ “placement” and although they didn’t think it was suitable either it seemed a better alternative. Especially as by this time social services were saying that if a suitable alternative wasn’t found by November the 30^th Nico would be “forcibly removed from the school and sent to a place of safety”. The family were informed by another care manager that “this could be anywhere in the country and once there it would be almost impossible to get him out”. In light of such appalling threats the family felt they had no alternative and so on the 30^th of November 2010 Nico moved to a house in South Oxfordshire (termed a home for life not a care home) run by Ridgeway Partnership (later to be taken over by Southern Health NHS Trust).

According to his Mum “problems began immediately”

Following a gastric illness in 2004 Nico had developed a problem with vomiting. Procedures had been put in place to avoid him aspirating and he had a detailed person centred plan when he arrived at new house/ service/placement.

“Although the vomiting was a concern from the time it began we knew that providing the guidelines in Nico’s Person Centred Plan were followed (as created for him at his school), he would be in no danger.  For almost 17 years he had Speech and Language therapy twice a week – this enabled him to control his swallow muscles, which maintained his safety if he vomited and hugely lessoned the possibility of his aspirating on his own vomit.  Also for 17 years he had daily physiotherapy and twice weekly hydrotherapy, both of which stopped him from developing muscle spasms and uncontrollable muscle extensions.  Preventing the development of muscle spasms can literally be life saving for someone like Nico and so was tremendously important.  In a matter of weeks after moving to the care homes, Nico began to develop problems with choking on his own saliva and began to develop a muscle spasms and extensions and this was solely caused by the fact that ALL his therapy (physio, hydro, speech and language) had ceased completely, overnight”

I’m cutting a very long and detailed story very short here but suffice to say for the next two years the family continued to press for the essential therapies to happen. This was supported by numerous, experienced medical professionals voicing increasing concerns around his life threatening lack of therapy and the family’s inability to affect any type of change and improvement. One physio was even visiting him to do his exercises, when she could, off her own back, because she was so concerned and worried about him. They had battles over funding and the lack of suitable care hours to ensure he had access to the therapies he needed and the quality of life he should have been entitled to. The quality of life he had for 21 years prior to this point.

According to his mum, for two years they were forced to watch their beautiful son’s health decline, his happiness evaporate, his natural friendly, outgoing nature ignored until his self-confidence disappeared.

“We watched him become thin, depressed and frightened by the care he received”.

Without ceasing they had tried to stop this.  Emails, phone calls and meetings too numerous to mention were ignored.  Highly skilled professionals giving the same advice were ignored too.

So great were the families concerns they were in the process of developing an alternative to where Nico was living, by speaking to social services and exploring the idea of adapting accommodation at home and moving him back there with his own support team.

Then the unthinkable happened …unthinkable but perhaps totally predictable given that the strict guidelines around almost everything about supporting Nico had been disregarded and ignored.

At around 6.30am on the morning of 22 August 2012 the family received a phone call from his house to say that Nico had been found by a staff member in his bed, not breathing.  They left immediately to drive there and were called on the way and told to go to the John Radcliffe Hospital instead. 

 “When we arrived at the hospital we were told by the doctor that Nico had died”  

“ So despite all meetings and attempted interventions, Nico died in exactly the way that had been predicted by the professionals and ourselves before we were able to remove him”  

Afterwards the Trust refused to tell the family how he had died or the circumstances surrounding his death.  The first the family knew of what had happened was when they read the coroner’s report the following year. Making a devastating experience even more traumatic… Can you imagine having to wait a 9 months to find out how your child died? and only read about it in a coroners report  –Beyond cruel!

No external investigation took place. Southern Health completed a “Root Cause Analysis” in 2012 and they decided that it would be better if the family were not informed of their findings … the words used were

“It was felt that it may be too distressing for you”. 

There are so many other shocking revelations in the pages of information I received it’s been difficult to know which bits to highlight. Sara blogged a little about some of it here but, here are a few other things, in a catalogue of appalling things, that happened following the days and weeks after his death.

• Just 4 days after Nico died the family were sent a request by the housing association to clear out his things. paraphrasing here obviously but as far as the impact on the family they might just as well have said this! 
• Staff at the care home asking the parents how he died! –extremely upsetting and traumatic for the family who had little information themselves.
• The family, including Nico’s younger sister having to comfort staff in their grief, on several occasions, with different staff and again when they visited to collect his belongings- while this demonstrates the staff obviously cared about Nico and were genuinely upset it was inappropriate, insensitive and some restraint, decorum and just a shred of understanding of what the family were going through ought to have been shown
• A phone call from the a member of the care home’s staff team, expressing their sorrow and also telling them how badly the staff were in need of counselling and support – totally inappropriate given the family were grieving for their own loss. It’s the Trusts duty to support its staff not the family
• Refusing to discuss Nico’s car which, by the way, the family had let the Trust use for his benefit and being told “they must” attend a parents meeting at the home to discuss with other parents. No consideration about how heartbreaking it must be for parents to have to revisit the place where their child died apart from the fact it was Nico’s bloody car they were talking about!
• A phone call, out of the blue, at their home by a distressed member of staff who was on duty when Nico died…asking the family repeatedly “how could God let this happen?” asking the family to explain why this happened, asking their forgiveness and telling them he hadn’t slept for weeks…no words for this one -really no words – you couldn’t make this up!
• The care home manager demanding that the family return Nico’s daily diaries – filled with a record of what Nico did everyday  – upsetting for the family to hand back

All this shows a complete disregard and lack of sensitivity to the feelings and emotions the family were going through at this time. It highlights too that the Trust appear to have no procedures to support their staff, never mind the families in these circumstances. It’s clear that the family have been treated with disregard and apathy and one can only assume that there is no procedure in place to deal with unexpected deaths…or if there is one it is deeply flawed or was simply not followed.

As if this isn’t all bad enough

• There was no communication from the Trust about how, when or even if Nico’s death would be investigated in order to prevent anything like this happening again. No talk of lessons learnt…no talk at all about wanting find out how this happened actually!
• To this date…No feedback from the Trust to the family or any explanation about the circumstances surrounding his death –almost two years since his death! – totally outrageous and completely unacceptable!

 Nico was just 23 years old when he died. Although it was a result of very different circumstances and in different settings his death, in my humble opinion, was equally as preventable as Connor’s. Sadly no external inquiry has confirmed this officially, because the Trust responsible managed to crush a devastated, isolated family into silence… Just like they tried to a year later with Sara and her family.

Those of us who know Connors story know only too well that had Sara not had such a high social media presence, is a prolific blogger and is a highly respected academic, Southern Health would have applied the same tactics. Brushed under the carpet… put down as natural causes perhaps?… another disabled person whose death was inevitable instead of completely preventable had the right care and support been in place and the family listened too.

Just like Connors family, Nico’s family have to fund their own legal case…as if it isn’t distressing enough to lose your much loved child under such abhorrent circumstances at the hands of those charged with their care they then have to almost bankrupt themselves to get some accountability and justice. It’s just beyond shite!!

Nico’s family have been warned there is little hope of legal redress but in my mind justice comes in a other ways too. One is very definitely ensuring that this story is heard and that those responsible for letting it happen are, if not held to account by the courts are at the very least exposed and named and shamed. Another is what we are all fighting for in the justice for LB campaign and that is that change happens and that this shameful lack of care, this abhorrent disregard for people with learning disabilities is exposed and prevented and ‘death by indifference’ is eradicated to the history books. That this chronic underfunding of social care services is addressed … and that our beloved children are viewed as human beings and valued as much as anyone else in society. And, should the worst happen, this disgusting, cruel and inhumane treatment of families following the death of their child/relative MUST STOP and those responsible held to account!!

I’ll leave the final words of this post to Rosi, Nico’s mum, taken from a complaint letter to Ridgeway Partnership/Southern Health NHS Trust on the 12^th of December 2012.

“Nico was a wonderful and precious son and we will continue to mourn him for the rest of our lives, however a legacy that he can leave is that other families in similar circumstances receive sensitive and appropriate help and support from Ridgeway.  That there is transparency, openness and a desire to learn and improve embedded in your culture and in your processes.  We would like to know how Ridgeway intend to use this information to learn and share with us how you intend to move forward in the future so other families are not exposed to this type of experience in the future”.

And so say all of us!

Rosi Reed, you are no longer the “dust in the corner”. We have your back, we will share your story and ultimately we will, together get…. #JusticeforNico             #JusticeforLB #Justiceforallthedudes