Photograph of NicoNico 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.  We loved our beautiful and loving son tremendously and his loss has left a hole in our lives that will not heal.  We, his sister and his friends have had an awful time, which has been made so much worse by the way that Southern Health NHS Trust have treated us since Nico’s death.

Nico had no serious health problems and died unexpectedly on Wednesday 22 August 2012 in the supported living home he was living in.   He was sick in the early morning of that date and despite his frantic attempts to get attention and help from the care team, no-one came to assist him and he died by inhaling his own vomit.  On the date of his death it was run  by Ridgeway Partnership but Ridgeway had already been taken over by the Southern Health NHS Trust. His death was not investigated by Southern Health and in fact we have had to fight them every step of the way, both for reasonable communication from them and for a full inquest into Nico’s death.  They refused to tell us that they had held an in-house inquiry into his death (not a full or official investigation) until 6 months after his death and even then they refused to tell us their findings.  They have never told us the findings of the in-house inquiry.  It has always felt as if they had simply brushed us into a corner and forgotten about us.

A family friend, Charlotte Sweeney, put us in touch with a lady called Beverley Dawkins, who at that point worked for MENCAP.  Beverley had written the famous report on the unnecessary deaths of young disabled people “Death by Indifference” and she had also supported the Winterbourne View families.  To our astonishment and delight, Beverley agreed to take on our case.  By then we had become so used to being ignored and treated like “dust in the corner” that we had almost given up hope of ever achieving justice for Nico.

Beverley found us a solicitor and made it her business to “park her tanks on their lawn” and Southern Health realised we meant business.  But it took over 2 years before Nico’s inquest was finally held in December 2014.  By then all our savings had been spent on trying to meet our legal costs and  we had gone into debt.  Without financial help we would not have been able to have any legal representation at Nico’s inquest and Southern Health would have just steamrollered us.  Charlotte, Connor Sparrowhawk’s mum and a lovely lady from Twitter who we have never met but will never forget, helped us with the funds  towards fighting Southern Health’s huge legal team and the learning disability charity MENCAP covered the remaining costs.

At the end of  the 3 day inquest the coroner returned the verdict that if Nico had been found within the specified time given in his care guidelines he probably would have been saved.  He also granted us Article 2 status.

Within a few weeks of the inquest verdict, NHS England and Oxfordshire Clinical Commissioning Group co-commissioned an independent investigation into Nico’s death.  The investigation will be conducted by the Health and Social Care Advisory Service (HASCAS) and will begin in January 2016.

The rest of our story, the finer details and a lot more information on what has happened to us and how we have dealt with our grief along the way, is all detailed here in this blog.  The more you read, the more you’ll know.

We are one of the 1.200 families featured in the Mazars Report into the deaths of clients in the care of Southern Health.  We are featured because of the way that Southern Health treated us after Nico’s death and their refusal to investigate or support us to a reasonable or professional standard.   Southern Health are currently disputing the numbers involved.

I write this blog as a way to raise awareness of what has happened to us.  I write this blog so that more people in the world will know about my wonderful son.  I write this blog to heal myself and help me to get through the dark days of grief and pain.  I write this blog to support and help anyone else out there who has gone through/is going through the same thing.  I write this blog so that people who read it will be more educated and knowledgeable about what is being done in the country to our precious young people with disabilities and to their families.

I write this blog because Nico’s favourite thing was always “Hey, let’s talk about me!”  So let’s do that.  Let’s all talk about Nico.