Bit of a convoluted story tonight. Involving collecting train tickets from work and darting to the sorting office (completely crappily located outside the ring road) to pick up an important special delivery letter before attending a meeting with NHS England local team and families. In the sometimes comedic car share car. Remarkably, the traffic cleared at 7.20pm allowing me to pick up the letter with 10 mins to spare.
Eh? I thought, as I was given an enormous envelope. Important and big. I drove to the meeting, parked and opened it. Eurgh. It wasn’t the letter I was expecting. It was Part two of Sloven Candour. The mop up of missing emails mentioning me from their original trawl which found, er two.
I had a quick flick through the thick file before going in to the meeting. A sea of blackness. Literally. Seriously?
Most text has been redacted to the point of almost (not) hilarity (see above). This ‘new’ documentation is from a strangely narrow band, March – May 2014. And only people with names beginning with ‘S’ seem to avoid redaction; Sue, Sandra and me (aka ‘mum’). Well done Sue and Sandra for stepping up. Katrina Percy is only listed once. Probably by accident.
One of the rare things left un-redacted was the fact “the family” stopped “service users” attending LB’s funeral because we didn’t want staff attending. Not true. We’d asked if they could be accompanied by staff who didn’t look after LB. Staff from the other units or locum staff. Another cracking example of Sloven selectivity.
I didn’t have a chance to look at this latest [I don’t know what], when the meeting got underway. A summary:
- NHS England Thames Valley area seem genuinely committed to changing learning disability/mental health provision in Oxfordshire.
- Everyone present recognised that this was currently shite.
- There seems to be a broader commitment to change among the CCG and local authority.
- Relevant external people have been drafted in to critically comment on the process of change.
- Pat (Bill, Pat and STATT Pat) now has a tablet and is playing candy crush.
At the same time:
- Funding to support necessary change is wishful thinking.
- Shite provision up to the moment was recounted by parents present with no sniff of improvement (in harrowing circumstances).
- There were no answers why the provision at Slade House hadn’t been improved since the CQC inspection in September.
- There was an expectation that families and learning disabled people are essential for teaching professionals how to do a proper job.
I’m writing about this meeting for a few reasons. 1. Because sadly I can now. 2. Because in Oxfordshire, we seem to be at a point in which the ‘chance’ for actual change seems to be now. Attention, focus, passion and commitment to change is on full boil because shite provision has become so visible. 3. Because this ‘change’ needs documenting.
So, bring it on. Our campaign is about effective change and we’ll shout from the rooftops with delight if it happens.
In the meantime. The new blue file. Awkward, offensive, combative, vile and dishonest. Further demonstrating complete disregard for LB and us as a family. No sniff of candour, honesty and transparency. Simon Stevens, if this gets poked under your nose in the lofty heights of NHS England Tower, please step up and do something. This hideous behaviour is a form of torture. And your name begins with S.
mydaftlife 
It is the same every where it seems – nothing changes – keep asking the question will it?
How can a freedom of information request have so much information redacted? Wasn’t aware that this meant Slovens could be selective with the information they shared…makes the ‘Freedom’ bit in this process a bit one sided. This is shite piled on more shite!! And the Slovens are swimming in it and apparently still afloat!!
Important point. Can the Information Commissioner be appealed to on grounds of obstructing an FoI request?
Because S is beginning of Simon and Stevens….can he be doubly accountable please!
The standard of redacted response is nothing short of shameful shite(another double s)
Thank you Sara for your tenacity and take care.
Dee
Wow, even redacting their own ‘Strapline’
this has been done without understanding the issue!
Oh what a tangled web they are weaving.
I am afraid that we had a very similar ‘redacted’ response when we requested my son’s file from Cambridgeshire LDP. It appears that the two counties are level pegging at the moment in their non transparent agenda of cost cutting non listening non action approach all the way to a Winterbourne View type environment. It’s heartening to read the efforts that have been put into the ‘Think Local Act Personal’ initiative, ‘Think Autism’, the Care Act 2014 and the ‘Three Lives’ report . BUT I am not seeing any response by the LA’s. Maybe Cambridge and Oxford would like to get competitive in their race to ‘REALLY CARE’!!
Dear Sarah
Please forgive me for randomly emailing you, I hope what I try to say does not offend. I know I don’t know you and I don’t presume having only read blogs that I do.
The redaction must feel like a final straw, but then you must have had so many final straws that maybe you have lost count by now.
However for me its the redaction that has compelled me to email you.
I have had to redact documents to edit either third party confidential information; names addresses telephone numbers etc or legal advice thats been given. It takes time, effort, and thought to ensure you get the balance right preserving confidentiality and not removing the total meaning.
And that is the point. It takes time effort and thought. Why can’t the time effort and thought that this took ( if it really was used in this instance !!) be put to greater use ?
All parents spend their whole life giving time effort and thought to their children, and once you have a child with any special need, disability, the time and effort and thought required is unquantifiable. And we do it with love maybe even at the expense of ourselves, our jobs/ careers, our partners, friendship or other children’s needs. Thats love for our children, we overcome the issues and the daily fights and we with all our time effort and thought keep the family together. And in the rather corny lyrics of Tammy Wynette ” when you add it all up the full cost of my love is No Charge” Although the reality is we have probably paid very high priced emotionally at times to keep our children and families functioning. It took time effort and thought to do it.
My lovely son, my Dude ( I love that phrase thankyou!) is 16 years old now. I kept him at home as long as I could with myself and his two other siblings. At age 11 I had to make the decision he went into residential school as no school locally would by now accept him. A placement I had previously fought for as a day pupil at a specialist autistic establishment had broken down when he told me he wanted to kill himself. My son was left with PTSD due to the restraint at this school. He was out of education for about a year before he moved to his current residential placement. Thankfully this Barnardo’s school has gained the trust of both him and myself and that is because the staff do really think about my son, and care in every sense of the word. The key word is the staff, for me a place is only as good as the people who work in it. It took time and effort and thought from them to get my son to where he is now, in a classroom ,learning, functioning and living in a supported environment. So it can be done. Why my son had to be failed and suffer to finally achieve such a placement is incomprehensible to me but I cling to knowledge some establishments exist with staff that can and do “care” . We are now beginning the preparation for move to supported accommodation post 18 and so our roller coaster journey continues…..
I anticipate any parent can read between the lines here I don’t have to explain the time, effort and thought that my love for him and my family was challenged with in living through this and making these decisions. And I am just another small example of what is going on in so many homes daily. ( Please I am not trying to compare any of this with your loss and Connors death.)
AND thats why I get so angry for you, because I and other parents can read between the lines about the fights you must have had to keep your family together and functioning before you made this decision to place Connor in this unit and he died.
I read your blogs and wonder at myself why have I and why did I not ever challenge what went on at my sons previous school? I am ashamed I have not. I know by then I was very depressed, on medication, having counselling ( either privately as how else could I make appointments or casually by my lovely GP whose surgery ground to a halt when ever I had an appointment as i was in for so long!) and trying to keep going to work every day ( I am a self employed Barrister ) and hold it all together. I was overwhelmed. I am embarrassed to say I was almost suicidal at one point, (but its important I do be honest so anyone knows that it is a reality to feel this level of pain but be able to draw back and you can come out the other side. ) So … how many other parents get as completely ground down like this?
BUT ….ALL OF THAT SEEMS VERY TRIVIAL COMPARED TO CONNOR DYING and I am not trying to compare. Instead I want to thank you for fighting for all of us and am in awe of your love, strength, time effort and thought that keeps carrying you fighting for justice for your son and all our children will reap benefit from your fight for justice. THANK YOU Sarah. I wish you strength and peace of mind whilst you cope with this and grieve.
Whilst documents may be redacted, no one can edit us or censor us out of existence and so our children will still be protected by our love. Thank you .
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