Nico ReedLearning disability charity Mencap has called for an independent investigation into the unexpected death of Nico Reed.

The call follows a Coroner ruling which said that if checks on him had been carried out properly he may not have died. 

Nico Reed loved music, laughing at slapstick comedy and spending time with his friends and family. He was born with cerebral palsy and was later diagnosed with profound and multiple learning disabilities. 

But in the summer of 2012, aged 23, Nico unexpectedly died while in the care of Ridgeway Partnerships (since taken over by Southern Health). Nico died of aspiration pneumonia due to, or as a consequence of, inhaling gastric contents into his lungs. Coroner Darren Salter determined on December 11 that if Nico had been checked by care staff as required by his care plan, he may not have died. He identified the following critical factors: 

1. Nico remained at risk of vomiting at the time of his death

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 for a period of 45–60 minutes

5. If he was checked earlier Nico could have possibly have been saved.

In 2010 – having spent 17 years at Penhurst School where Nico was happy, fulfilled and stimulated – Oxfordshire Social Services stopped funding his placement because they deemed his care package to be too expensive. As a result, Nico was moved to a supported living service, Barrantyes, then run by Ridgeway Partnerships, which his family and experts in the field warned could not meet his complex needs. 

Nico’s family noted his health started to deteriorate after 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, there were no specific risk assessments in place, even though experts have repeatedly raised concerns about the potential for serious consequences. 

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

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

Fighting for justice

Rosi Reed, Nico’s mother, welcomed the Coroner’s verdict. “We have fought for two years to get justice for Nico and today’s judgement goes some way towards this,” she said. “There is no doubt in our minds that Nico would still be here today had he not been forced to go somewhere that couldn’t support even his most basic needs. 

“Nico was incredibly special to all who knew him and he was so loved I can hardly put it into words. A shining, lively boy – he loved life, he loved people and he was so determined to achieve the best that he could do in all things he did. He cooked, painted, loved films and music – so much so that he sang in his local choir. He just plain loved life and lit up every room he entered. But as soon as he went to Barrantyes, we saw his happiness evaporate, his natural friendly and outgoing nature ignored, until his self-confidence had completely disappeared. 

“Nico died at just 23. A needless death. A preventable death. A terrifying death. A death that never had to be. It wouldn’t even have taken very much to save him from that ghastly end. All it needed was for social services and the NHS Trust management to listen to us and to act upon our words. We were ignored time and time again – a relentless fight which forced us to become David against Goliath.

“Nothing will bring our son back. No legal verdict will change what has happened to us or calm our grief. But it might prevent it happening again and that is why we fight on. This is not the end – it is just the end of the beginning.” 

Independent investigation

Jan Tregelles, chief executive of Mencap, welcomed the coroner’s ruling but said it did not go far enough and called for an independent investigation into the circumstances surrounding Nico’s death.

“There must now be an independent investigation into the circumstances surrounding Nico’s death. We must get justice for Nico and we must ensure that the health and care system learns valuable lessons from this awful tragedy so that no other life is needlessly lost. As Nico’s mother Rosi says, this is not the end.” 

Nancy Collins, a specialist solicitor at Irwin Mitchell, the firm representing the family, said: “Nico’s family feel incredibly let down and even before his death had raised concerns about the suitability of Barrantynes in meeting his complex needs. Nico was a young man with a learning disability who suffered neck spasms and the risks of him choking were simply not managed properly.

“This is the second serious incident regarding people with learning difficulties to come to light recently involving Southern Health NHS Foundation Trust; there is an on-going investigation into the death of Connor Sparrowhawk, who was also under the care of Southern Health.

“It is crucial that people with a learning disability are given appropriate support and care to meet their needs. Across the country services are seeing their budgets cut and it is extremely worrying. In Nico's case we know that the 20-30 minute night time checks that Nico should have received were not possible because of the staff to resident ratio. The coroner found that it was possible that Nico would have survived if more frequent checks had been carried out. 

“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.”

Kaliya Franklin, of People First England, said: “The verdict shows that Nico Reed's death may have been preventable. We're deeply saddened to be commenting on another death of a young disabled person in so-called 'supported living'. Health and social care cuts, and the closure of the Independent Living Fund, are likely to lead to more tragedies where people like Nico pay the price for a society more focused on cost, rather than the value of, care.”