How things could have been… and the FLOAT that sank!

Following on from my previous post…

As you may have surmised I was pretty annoyed about the fact we were being made to feel pressured to work with Southern Health and help them to “turn things round”… and that we were only alerted to the fact that there were problems and concerns (going back as far as 2011) about STATT following Connor’s death through social media.

All this makes a mockery of the “openness and transparency” lines from all parties as from where I’m sitting… they only want to be open and transparent NOW because it’s all in the public eye.

And, let’s be clear here…none of this is because Connor died it’s quite simply because the young person that died had a family and supporters who had a high social media presence, managed to get an independent/external inquiry into his death and make all this public. Without this, this would have just been another death, another incident that none of us would have known about. CQC wouldn’t have been alerted to STATT and wouldn’t have found what they had. Top bods from SH, OCC and OCCG wouldn’t have pitched up at the LD partnership Board, wringing their hands and eating humble pie….and no one would be asking OxFSN or My Life My Choice to help them turn things round. Because…none of us would be any the wiser about all this shit!!

I started to think about how things could and should have been…

Back in early 2012, following on from the widely publicised abuse at Winterbourne view, Oxfordshire Family Support Network and My Life my Choice (our fab self advocacy charity) were part of a group set up by OCC, called the Winterbourne Action Plan. Three people from Oxfordshire were at Winterbourne when the abuse happened so this stuff was pretty close to home. Ironically (now) we considered ourselves lucky at this time to have in-patient assessment and treatment facilities in county, so people where only sent out of county as a last resort. As least people were close to home and not hundreds of miles away and we’d had positive reassurances that services there were of a high quality. “False, Positive Reassurances as it turns out” to quote a KP line.

To cut a long story short we (OXFSN & MLMC) were asked to work up a fully costed proposal about how we could support people with learning disabilities and their families who were admitted to in-patient treatment centres, whether in county or out. The proposal included,

  • experts by experience (family members and PWLD) monitoring and inspecting  services
  • peer-to-peer support
  • information and guidance about rights

We called the service FLOAT (working title) –Family Liaison in Out of Area Treatment centres. We planned to work alongside MLMC who were working up their own part of this project to provide peer advocacy, easy read information and experts by experience to quality monitor and inspect. If it was going to be done properly it wasn’t going to be cheap but we were told… “whatever it costs …because it’s an important piece of work”

When the proposal was finalised and costed it was pretty swiftly rejected by OCC as being too expensive and not really what they’d asked for. The then lead commissioner rang us to tell us that, they’d been a misunderstanding/miscommunication by the LD team manager …and so basically the FLOAT sank!

What we weren’t made aware of at that time was that OCC and OCCG were less than happy with existing services in county and STATT was a concern to them …“Openness and transparency” seriously missing here! Er hum

The following is from the Oxfordshire Clinical Commissioning Groups paper from July last year. Sara blogged about it here but in the spirit on openness and transparency here is the section without redacting names.

d. In the Non Acute Sector

i. Southern Health

LD services are commissioned through section 75 agreement with the CCG and Oxfordshire County Council (OCC).

 There are concerns about the safety culture and quality of patient care in specialist inpatient ‘Assessment and Treatment’ services for people with a learning disability and mental health issues.

 Since 2011 there have been concerns about the way in which serious incidents requiring investigation (SIRIs) have been investigated by the Ridgeway Partnership. The concerns were around the organisational response to incidents and specifically that they appeared to suggest the lack of a robust safety culture within the organisation.

It was hoped that when The Ridgeway Partnership NHS Trust was acquired by Southern Health NHS Foundation Trust that concerns would be addressed. However OCCG and OCC have not been sufficiently assured that the required change has taken place. Currently Oxfordshire are not placing patients in one Southern Health Assessment and Treatment Service and there are conditions in place around placing patients in a second service of this type.

 Many of the SIRIs involve the use of physical restraint. This is a high risk area which requires a clear organisational approach, strong leadership and close supervision. At OCCG’s request, OCC has issued a performance notice to Southern Health around the management of physical restraint. The notice requires that the trust develops and implements a code of practice for restriction and restraint.

OCCG and OCC have been working with Southern Health and continue to do so. OCCG continues to monitor Southern health SIRIs in services used by Oxfordshire patients closely.

“A lack of robust safety culture within the organisation” identified in 2011 and yet it took two years to decide things were not improving under the new leadership….anecdotal evidence from people using SH service suggest to us now  that things were getting significantly worse actually.

But…what if our FLOAT had floated?

Experts by experience would have inspected long before Connor was admitted and issues would have been flagged up by independent quality monitors, people who knew what good should look like. Families would have known what good should look like in these units too. They would have been armed with their rights and responsibilities under the Mental Capacity Act and Mental Health Act legislation. People with learning disabilities and their families would have had some independent advocacy and information.

N.B Southern Health and OCC appeared to like the idea of experts by experience inspecting and monitoring their services when this discussed on Wednesday and were keen to talk to MLMC more about it, they didn’t mention families in this…so I did!

We also now know that an OCC commissioner visited STATT just a month before Connor was admitted. Still nothing happened, admissions to this hell hole still took place, concerns flagged up two years before were seemingly ignored, brushed over.

As for me, anger aside… It breaks my heart that what they are ALL asking from us now is exactly what we were offering them 2 years ago. Perhaps…just perhaps had they had run with this proposal Connor wouldn’t have died.

Of course there are much wider issues up for discussion here…like why people need these units anyway, the lack of good support in the community…and the lack of person centred thinking and approaches during “transition to adulthood” (and all other stages) the preventative stuff! The fact remains this was all so preventable.

Following what happened to Connor we have picked up the FLOAT idea again (although we’ll try to think of a better name). We’re working with other national organisations to try to make this a reality for all the other young dudes.



About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
This entry was posted in Uncategorized. Bookmark the permalink.

4 Responses to How things could have been… and the FLOAT that sank!

  1. Brigid says:

    Unbelievably frustrating & upsetting knowing they had the information and tools to get a decent post Winterbourne service and had ways & means of improving things and didn’t bloody do it. Shame on them and yes it does make me wonder if Connors story had not been covered in the dignified way it has been by his family would we have even heard about his heartbreaking & preventable death .It shattered my trust completely in the service providers who care and look after our Ella ( and they are one of the better ones ) We question everything now .We changed so much of her care plan after Connors tragic death . RIP dude . You are changing things but it should not have had to come to this . Gail, another brilliant piece of writing . I can’t imagine the difficult task it must have been to listen to all of this ,knowing how much you knew & loved Connor and the pain his amazing family have endured .Well done for not swearing . I’d struggle not to . (Bastards )

    • emptynestmum says:

      It’s happened at a time when they were having a a restructure Brigid so I’m not necessarily blaming individuals as they were all under pressure then, but it’s sad isn’t it and bloody frustrating. I can’t help thinking what if! X

  2. Pingback: Cry Me a River, Katrina Percy - Justice for LB!

  3. Pingback: David Starkey, Justice for LB & Me #107days | A Bit Missing

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s