Justice for Nico

Nico Reed was a young man who loved life and lit up every room he entered. Known to family and close friends as Mr Ginge (from his hair colour), Nico loved music, laughing at slapstick and being the centre of attention. He befriended anyone he thought needed his support and nothing made him happier than making others happy. Nico was born with an undiagnosed syndrome which presented like Cerebral Palsy but that didn’t stop him making sure that the world knew he was around and heard his voice.

Description of Nico by Rosi Reed, his mother

Today the Senior Coroner for Oxfordshire recorded a narrative verdict for his Conclusion of an Inquest into the death of Nico Reed.  In 2010, when Nico was 17 years old, he moved from his school into a supported living service that was run by Ridgeway Partnership, which was subsequently taken over by Southern Health.  Nico had cerebral palsy and a diagnosis of profound and multiple learning disabilities.  According to the Mencap press release his health deteriorated soon after he moved to the service.  His family and other experts warned that the service could not meet his complex needs:

Nico’s family noted his health starting to deteriorate when he moved to Barrantyes. In 2007, Nico contracted a severe bout of norovirus, which caused him to start vomiting early in the mornings. This weakened his oesophagus and meant that he was sick very easily.Despite all staff at Barrantyes being aware of this – and families and experts repeatedly raising concerns about how serious the consequences could be – there were no specific risk assessments in place.

For 17 years, Nico had received regular physiotherapy, hydrotherapy and speech and language therapy at Penhurst School to keep his muscles strong and prevent spasms. However, at Barrantyes this support was reduced, and the family believe that this led to increased problems with choking and swallowing.

(From the Mencap press release)

According to Mencap, the coroner identified the following critical factors in the narrative verdict:

1. Nico remained at risk of vomiting at the time of his death, this remained a significant risk.
2. It would have been preferable if there had been a specific risk assessment to   deal with that early morning risk.
3. Night time checks were required to be carried out every 20 minutes and this was recorded in the care plan.
4. On the night of his death, Nico was not checked a period of 45 – 60 minutes.
5. It was possible that had he been checked earlier, Nico could have been saved.

The press release goes on to say that:

Ridgeway Partnership refused to tell Nico’s family how he had died or the circumstances surrounding his death. Nine months after Nico died, his family read in a Coroner’s letter how he had died.

Over at Community Care, Southern Health are quoted as saying that they were confident that Nico’s needs ‘were assessed and met in the most effective way possible.’  They go on to say that ‘though we do not believe we could have changed the outcome that day, we are committed to learning from any incident such as this, and from the coroner’s comments’.  I don’t know about you, but I can’t find anything resembling an apology in that article.

As readers will have noticed, this is the same Southern Health that ran the service that Connor Sparrowhawk was in when he drowned in the bath – a death that an independent investigation found was preventable.   An inquest into his death is pending, but there are some striking similarities.  Mencap are calling for an independent investigation into Nico’s death.  Separately, Connor Sparrowhawk’s family have called for a review of deaths in services provided by Southern Health – but his family learned this week that this review is not to be the independent expert review that they had hoped for – but a review conducted by Southern Health and their commissioners.

I am not writing about Nico’s Inquest because it is legally interesting –  but because it raises wider issues which need to be discussed.  However, I do feel duty bound to mention one significant legal element of the coroner’s verdict about the scope of the Human Rights Act 1998 in supported living services.

Graeme Hall of Doughty Street chambers represented Nico’s family, and according to the Doughty St press release (and this tweet when I asked them online) Southern Health had argued that Article 2 of the ECHR – the right to life – was not applicable.  This was significant because when Article 2 is engaged, special provisions for an Inquest come into force (explained here, by Inquest).  The Doughty St press release goes on to say this:

The Coroner’s Article 2 ruling was opposed by the Trust, and marks a recognition that enhanced and positive duties to protect life are owed by care providers to vulnerable residents in supported living, even if they are a private organisation.

I was a bit confused about this because both Southern Health and Ridgeway (who provided Nico’s care at the time) are NHS bodies which are surely pretty indisputably public authorities in the meaning of the Human Rights Act 1998 (even despite the ruling in YL and the fact that they are providing supported living services – surely?).  However, I think the key issue may have concerned whether or not Nico was deprived of his liberty.  The Chief Coroner recently published guidance on the outcome of Cheshire West; as a result of the ruling many more people dying in care homes and supported living service may be considered to be detained and so will need to be referred to the coroner.  This has the potential to have many upsetting and problematic consequences for the families of the deceased, but in this case it seems to have been very important.  According to the Mencap press release, Nancy Collins – who represented the family – said this:

“This inquest is believed to be one of the first in which a Coroner has relied upon the Cheshire West Supreme Court judgment from earlier this year to find that Article 2 of the European Convention on Human Rights (the right to life) applies. This reflects the fact that although Nico was in supported living he was in effect under the care of the state. It clarifies the obligations on those caring for vulnerable adults with learning disabilities to take steps to protect the right to life of those in their care.”

I will let others dwell on the legal significance of this.

Stepping back from the law, what stays with me is a deep sense of sadness for Nico’s family, and also for other people with learning disabilities and their families who have been so badly let down.  Where is the public outcry about the CIPOLD study?  How many people have actually heard of it?  Here is one of the key findings of the CIPOLD report:

Families of people with learning disabilities more commonly felt that professionals did not listen to them.

I cannot imagine how desperate these families must have felt, to know that their loved one’s health and lives were potentially at risk and to feel so unheard.  We need to listen.

[Update – 14/12/2014 – Sara Ryan and Mark Neary have both written great posts about an interview by Phil Gayle on BBC Oxfordshire; they are well worth reading]