At Marble Arch, waiting to catch the bus home after birthday day out. Connor and Tom (by Sara Ryan)

On 4 July 2013, Connor Sparrowhawk drowned in a bath at a facility run by Southern Health NHS Trust. Connor was 18 years old. He had learning disabilities and epilepsy and he had been left to bathe unsupervised behind a locked door. His family’s campaign for transparency provoked an inquiry that revealed Southern had failed to investigate hundreds of unexpected deaths. Deaths of learning disabled people were least likely to be investigated. Connor’s brother Tom Ryan writes:

It’s been nearly three years since Connor passed away, three years that have gone strangely quick and have had a huge amount of low points but also some amazing moments, my personal favourite being the mentions of Connor in parliament, something I can imagine him being ecstatic about. Being so young at the time it happened, 13 years old, I was very naïve about a lot of things, the NHS, the British legal system and general parliamentary workings. I genuinely believed that as a country everyone important would come together to sort out the mess that is the mental health care system we have. 

That idea faded extremely quickly, but still I figured once the first damning report had come out then change would surely follow. Again I was wrong. The one thing I’ve learnt from this experience is that you can have all the evidence you need to prove wrongdoing but if enough people of importance are tangled up in it then you will never have enough to actually see change occur.

The way that Southern Health has treated my family has shown how complacent they are with being rubbish. They treat my family as a problem that they need to be rid of, instead of engaging with us and actually making a better care system. Given the option I feel they would rather get rid of my parents and keep things rubbish than actually put any work in to change things and provide a good service. 

I can watch the chief executive Katrina Percy say she’s “really, really sorry” like some five year old who broke a plate, countless times, but what I haven’t seen once in the last three years is actual evidence of change for the better, or even just an attempt to engage and listen to families.

Craftivism by George Julian #JusticeforLBListening to families should be such an obvious part of providing care for someone’s son, daughter, sister, brother. We are their family, we aren’t going to try to cause harm or be problematic.

When a mother tells you she’s sure her son’s had a seizure, he has. It isn’t just a case of putting some Bonjela on their tongue (that’s what happened to Connor) and saying you have it under control.

And when a mother stands up in your board meeting and tells you she’s read the Mazars report that revealed Southern had failed to investigate hundreds of deaths, and tells you this:

“For a parent of a young person with learning disabilities and autism the report reads like an apocalyptic nightmare.”

And tells you: “The current board really needs to stand down as a matter of urgency and allow competent, skilled, committed individuals . . . to take charge.”

That’s not a time for your chair, Mike Petter, to say “already answered that, next”. That’s a time to think “We are a healthcare provider, yet this mum doesn’t feel like her son’s being cared for. How can we solve this?”

If we go back to the start, when Connor passed away, we see Southern Health claiming that Connor died of “natural causes”. That wasn’t true. My brother’s death was fully preventable. Last October an inquest jury said neglect contributed to his death. Even then, more than two years after Connor passed away, Southern Health still hadn’t worked out how to keep epileptic patients safe. The Coroner told them to take action to prevent future deaths. 

Straight away we see the characteristics which over the last three years have become inseparable from Southern Health: childishness, deceitfulness and a lack of accountability. 

From the outset they refused to admit it was their fault and did all they could to bury Connor’s death along with so many others.

The ridiculous thing about all of this is that when I look at what families demand from Southern Health and the way that they just don’t change I sometimes worry that maybe we are asking a lot or being unreasonable. But then I list the demands of the families and they shouldn’t even be demands, they are such basic requests that if asked on behalf of any other group in society would’ve been dealt with straight away with no barriers. So why does it take so long when it’s for those with learning difficulties?

I was speaking to a friend about all the events and he said something that really struck me. I’ve known him for as long as I can remember and he was round our house a lot growing up. He said that he didn’t really realise Connor was autistic till after he died. Which I think really shows flaws in the system we have in place, one which puts a huge emphasis on the difference of people and isolates many by doing so.

My mum talked of her dream that an outcome of all this saying she would love a society where disability wasn’t even mentioned because it wasn’t at all important as everyone was treated equally and worked to help each other. I think that’s a great dream to have but the sad thing is, which my mum points out, is that with the way things are at the moment it’s unreachable.

We can't stop thinking about this dream of @sarasiobhan 's. Wouldn't it just be incredible? https://t.co/g4ugkT9Zl5 pic.twitter.com/WexHTdOa6W

The way that the government and NHS do absolutely nothing to improve on the issues just adds to the way in which these people are isolated from everyone else in society. If you look at the findings in Mazars, the hundreds of unexpected and uninvestigated deaths, and imagine it wasn’t people with disabilities, and it was a different group, we wouldn’t have it. The government would be all over it to make sure it wasn’t something that ever happened again. Yet since Mazars the only action we have really seen from the likes of Jeremy Hunt is that he wants more reports. More reports? How many reports does it take to see someone actually take responsibility for their actions? How many will it take to see something actually happen?

We have reached a point where it’s the government’s duty to take charge and to make change happen. At the moment all we have learnt is that even if you are in the right you can campaign for three years tirelessly for positive change that will benefit so many in society, bearing in mind the actual change won’t help my family as sadly it’s too late for Connor. And still nothing can happen. It’s the duty of those in any position of power to make change, be it NHS, parliament or the police, to show all the families that are campaigning that change does happen and that they are being listened to. Isn’t that what democracy is for?

• Edited by Clare Sambrook for Shine A Light at openDemocracy.
• @CLARESAMBROOK
• @SHINEreports

Notes

•          • Tom’s and Connor’s mother Sara Ryan blogged throughout Connor’s time at Slade House and has continued to do so since his death. Here is her blog.
•          • Connor’s family is supported by the charity INQUEST, and represented by INQUEST Lawyers Group member Charlotte Haworth of Bindmans solicitors.
•          • Details of the Care Quality Commission inspection report of December 2013 can be found here.
•          • The Verita report, commissioned by Southern Health NHS Foundation Trust, which confirms that the Connor’s death could have been prevented, can be found here, along with a statement of regret from Southern Health’s chief executive Katrina Percy. (February 2014)
•          • The Mazars review: Independent review of deaths of people with a Learning Disability or Mental Health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015 PDF here. (December 2016)