The journey to Chip Paper

When your interview is the main item on the BBC national news, you’re getting press coverage.  To be honest though, if it wasn’t for the other 1,453 unexpected deaths, I doubt Nico’s death would have got a look in.

The BBC’s Michael Buchanan (a very nice man) came to our house and spoke to me for hours, most of which was filmed.  We talked about Nico, about his life and his death.  We talked about Southern Health NHS Foundation Trust’s refusal to hold an investigation into his death.  We talked about their decision to conceal from us that they held an in-house review of his death and decided that not only were they not going to tell us it had taken place they also weren’t going to tell us what they found out.  They felt it would upset us.  I gave him a copy of the letter, the only letter ever written to us by Katrina Percy, the then CEO of Southern Health, in which she states these things without a trace of embarrassment or sorrow.

The interview was shown on all BBC news broadcasts in the run up to Christmas 2015.  Yet another Christmas spent under a cloud of anger, sorrow and pain.  Every year since Nico’s death there’d been some fresh trauma to deal with in December.  That particular Christmas was us finding out, for the first time and via Michael Buchanan, that Nico was one of over a thousand deaths so unimportant to the Trust that they didn’t require an investigation.

Some of you will remember the Mazars report.  The journey to the Mazars report was set in motion by the horrendous, avoidable death of Connor Sparrowhawk.  The report found a vast catalogue of death cover-ups running into over a thousand, which of course sparked interest from the BBC.  The Mazars report was going to be another of those “game changing reports” which makes the country realise the awful things that are being done to our precious young people.  That December the Mazars report broke the scandal of 1,454 unexpected deaths in the care of Southern Health and that the NHS Trust Southern Health had only investigated 1% of these.  The others, including my son, didn’t warrant an investigation in their eyes.  As they clearly put no value on their lives, why would they consider their deaths to matter?

We had advance warning of the report publication date and we were told the BBC were covering it and we were asked to do the interview.  But out of the 1,454 families affected by the report, only a very small number would have known in advance.  For the majority, the first they knew would have been when they switched their TV on.  After I watched the news coverage, I couldn’t help but think about those hundreds of families with no idea this report was going to be splashed all over the television.  The hundreds of families who had lost much loved family members in the care of Southern Health.  Families who may have queried why there was no investigation, and families who simply believed what Southern Health had told them when they were told no investigation was necessary.  I thought of those families sitting and watching the news and knowing the truth for the first time.  What a terrible, traumatic way to find out that you’ve been lied to. 

It’s almost unimaginable.  You’re sitting on your sofa, maybe eating your dinner, and suddenly you are watching a report which says your much loved family member is part of the Mazars review and that review finds “Southern Health failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems over four years” and more than that, there was “no effective management of deaths or investigations and there was a lack of effective focus or leadership from the board”.

I imagine stunned family members pausing aghast, thinking “are they talking about my son/daughter/brother/sister/ mum/ dad…………”  What a horrifying way to find out that the awful death of your much-loved family member was basically just a professional inconvenience to be quickly swept out of sight into the corner.  There was a number for anyone to ring who needed support following the coverage. But when families rang, it turned out to be Southern Health’s own PALS (Patient Advice and Liaison Service) at the other end of the phone, ready to give you support and counselling about the way Southern Health had treated your loved family member! 

Media coverage can be mutually beneficial – they need a story to tell and we need our stories told.  Although we may benefit from it, the idea of the media looking after families in the aftermath of these broadcasts isn’t going to happen.  Michael Buchanan was wonderful and stayed in touch for years after and there’s other journalists like that (journalist Ian Birrell and BBC’s Jayne McCubbin are two that come to mind) and other families who appreciate their involvement.  But at the end of the day the media is looking for stories to tell – end of. Their role is not to support families through the media coverage and afterwards, when the coverage is over but the pain remains – so is it worth it?  When I did my first television interview, some people asked me why I’d done it, chosen to go public with my feelings and to the press. I told them I was aware of how short public memory is and that if people from the press were interested in our case at that time, I needed to grab that moment and talk to them.  Because tomorrow we would be chip paper.

We need national press coverage as it gives our fight more clout and brings it to a far wider audience, many of whom may be unaware of the shameful way disabled are still treated in this country, in life and in death.  For a week we were catapulted into a high-profile position without really being ready for what that would mean.  But the interest in our part of the story soon waned.  The scandal rolled on without us, unfolded on the news and via social media.   It was only a few weeks before our part in the story was chip paper.

The famous “Mazars Review” is now itself chip paper and some people reading this won’t have even heard of it or know why the report was done and what it apparently achieved.   Since the report was published more disabled people have died unnecessary deaths and many of those deaths have been lied about and covered up.  Not every disabled person who has died in the care of a Trust has had their death investigated and of those that have, some investigations are untruthful.  Has anything changed?  Have we moved forward?  Or are we stuck in an endless circle of important reports which shock and horrify the public when covered by the media, but are soon forgotten?  We wait for changes that don’t happen and then another important report comes along, highlighting more shocking abuse of power.  How quickly these reports become chip paper.

But as you watch the chip paper piling up, remember each of those papers contains the much-loved lives of hundreds and hundreds of people.  Lives lost, and for those left behind, lives ruined. Pain and suffering which endures long after the chip paper is bundled up and pushed into the bin.

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