Dinosaurs & Elephants in the room

I’ve been a parent/carer member of the Learning Disability Partnership Board in Oxfordshire for almost ten years. G was 14 when I joined and he’ll be 24 next month. I’ve always loved LDPB. It’s always felt we were working in real partnership and making a difference. Things have changed somewhat since the National Valuing People Support Team disbanded a while back and the funding we had to dish out to worthwhile projects ceased. Feels a bit like a “rudderless ship” now and over the last couple of years we’ve constantly returned to the “why are we here?” what do we do?” and what is our future?” questions.

Yesterday was an important meeting of the board. The Big wigs of Southern Health, OCC adult social Care and the new chief of the CCG turned up in force. Katrina Percy (KP) (CEO of Southern Health) was to give a presentation and answer our questions. The other bods included her Deputy, Sue Harriman (at the helm when KP was on maternity leave), the new Clinical lead for LD services in Oxon (her name escapes me) and an independent Consultant (one of 3) they brought in to “turn things around”.

So I guess to answer the questions above… If we didn’t have a Partnership Board we would never have been able to get these people together and attempt to hold them to account.

Anyway back to the meeting…

You could feel the tension in the room …This wasn’t going to be an easy meeting and you could sense their collective unease. I was pretty tense and fired up too…trying not to lose it, hold it together and get to grips with live tweeting (I’m rubbish at multi tasking)

KP stood up and started her presentation. I was sat at the front…eyeballing her. I sensed she knew who I was and had probably been warned about me because she directed a number of her responses to me….I’m pretty well known locally for speaking my mind... and I pride myself on my honesty. She seemed to as well as she mentioned being open, honest and transparent a number of times. If I hadn’t known better she would have been pretty convincing.

KP was everything thing I thought she’d be from what I’d seen and read. A seemingly young, award winning CEO of an NHS Trust, confident, slick, remembering the names of everyone she spoke to, referring to people by their first name when answering their questions and quoting them by name when answering others…  “yes! As xxxxx said” .

She had all the patter and was clearly attempting to win us over …look how lovely and friendly I am….Blurgh!!

She started with an apology…for letting Connor down and failing to keep him safe. The same, meaningless, old stuff we’ve all heard before and kind of what I expected. Letting someone down has always felt pretty bloody weak to me. You let someone down when you cancel on a date or turn up late (and other pretty trivial stuff) …letting a teenager die in your care…well!

The apology didn’t wash either. I recall being caught out doing something wrong when I was kid and saying I was sorry to my Dad…his reply… “You’re not sorry, you’re just sorry you got found out”  seems pretty apt here.

She talked a lot about “things they didn’t do well and should do better” I wish I’d counted how many times and about how many things she said this. Suffice to say it instilled no confidence. Turns out they didn’t do a lot well and needed to work on rather a lot too…some of it pretty basic care stuff.

When asked who the SH lead person for learning disability social care services (TQ21) in Oxfordshire was, she didn’t know… demonstrating either poor preparation or a distinct lack of interest…after all LD services represented only a 7^th of their overall services she’d told us. Either way it was a pretty piss poor response for anyone, never mind an award winning CEO given who she was addressing.

My question related to the treatment of Connor’s family since his death and the treatment of another family prior to this.

KP said (again) they’d tried really hard to engage with Connor’s family and admitted they got it wrong (no shit!) and asked what else they could have done. I told her to read Sara’s blog, especially imagine. It’s all there. She talked about being a Mother herself and couldn’t imagine what the family is going through….well here goes Katrina, imagine this…

You’ve gone back to work, handed you precious baby to a childminder/nanny and said childminder/nanny has left her/him in the bath alone. She/he drowns and dies…how would you feel? then this happens …yes those responsible for those responsible send you letters, when you haven’t even begun to accept it’s even happened, are still in shock and are having to plan a funeral for your beautiful child…then….oh God…then as time goes by they attempt to crush you into silence …well we know the rest!

When asked about the death of another young person, a year before Connor…SH top bods looked puzzled…. looking back and forward to each other for the answer. They thought I was referring to another death in STATT…

Er, what?….there was another death in STATT?…. we didn’t know that! …Fuck me it gets worse!

They didn’t know who I was referring to, nor anything about the fact that his family had still not received the results of the internal investigation into this death almost two years on. SHOCKING!!…heartbreaking and downright fucking cruel!

Apart from the other guff being spouted I was struck by the language used….patients, services users, clients, beds. I’m always in danger of switching off completely when I hear terms like this used about people with learning disabilities. Medical model of disability, service speak and corporate/clinical crap. It felt as though had gone back decades and I’d been transported back to the bad old days. But, this wasn’t the bad old days. This is the biggest provider of learning disability services in the county…this is the future (scary thought and far from bright!)

Then came the issue of what can we do to improve services. “We want to work with you so we can get better at what we do” KP (et al) insisted.

I felt eyeballed now… from the head of adult social care and the lead chappy from the CCG as well as others. Then the tables turned and felt as if it was us (OXFSN) who were under scrutiny. We’d refused to meet with KP. Then we’d refused to meet with the Consultants and their “turnaround” team.  Lead chappy from the CCG asked why…if we wanted to see improved services why we wouldn’t work with Southern health? (I’m paraphrasing but that was the gist of it)

I have to say I felt a little pressured here. I’m passionate about improving services and in turn the lives of people with learning disabilities. I’m passionate about working in partnership with others in order to do this. I didn’t like being made out to be obstructive and it very definitely felt like this. Advising Southern Health on what they should do to improve services for people with learning disabilities and their families is something we know we could do. Whether they could actually do it from this starting point is doubtful in my view and that’s the crux of it for me.  Along with not wanting to be used as a box ticking exercise…. “we are working closely with families improve our services” TICK, our reasons for not wanting to meet with the consultancy team are stated here in an email to the head of adult social care.

Gail and I have now consulted with our Board and others about the offer to meet with John Barrett.(Consultant brought in by SH)

After a great deal of thought, we have come to the decision that we are not willing to meet with him at this stage, as there are new developments in terms of the CQC report on Piggy Lane and other issues we have been made aware of through regional media  on Southern Health. We presume he is being employed by Southern Health therefore we consider that there may not be sufficient independence in his role to discuss these matters neutrally. We  have concerns about how our involvement at this point may hinder, rather than help the family  of Connor Sparrowhawk as we understand that they are now considering further legal redress. We also feel that the future of the contract with Southern Health needs to be addressed and our involvement in trying to drive up quality may be a little premature, given these larger questions that will need to be considered.

When there are any strategic decisions to be made on these issues to plan for the future provision of services in the locality, we expect our services to be called upon to be actively involved and consulted.

As ever, we remain willing to maintain a dialogue with yourself and Robyn (Lead Commissioner for LD)and appreciate the honest meeting we had with you.

After the meeting the pressure continued…

Consultancy guy came over to talk/persuade me (OXFSN) to work with them. He was a nice enough chap who seemed committed to turning things round (probably because I expect he’s being paid shed loads to do it). I explained my situation and that of our organisation. I talked about the level of change that was needed and what a mountain to climb that was based on what I’d heard today and witnessed in the last year.

Discussion then led to my connection with Connor’s family…my obvious personal involvement which would explain my anger. Whilst I agree that maybe I’m not the right person to work with them because of this I kind of resented the implication that my judgement and professionalism were being compromised because of it because my anger goes a lot deeper than this.

Yes, I’m angry, yes I’m upset but who wouldn’t be?

I’m pretty fucking angry about the other deaths too!

I’m pretty fucking angry that in the two years or so that this bunch of “dinosaurs” have taken over services in Oxfordshire that services we were once proud of in our county (for their person centred approaches and creativity) have deteriorated so much that their representatives now use the “service speak” they use and haven’t a clue what good support for people with learning disabilities should look like. That the wonderful support provided to my friend Jan’s daughter (and her friend) is now viewed as an “anomaly”, when the rest of us had seen it as a beacon of good practice and something we all aspired to for our children 14 years or so ago… (slippery slope already acknowledged when that post was written)….And

I’m pretty fucking angry that we were never made aware of the concerns OCC had about STATT since 2011. That they went to visit the month before Connor was admitted and did nothing…. and we had to learn about this all through social media and because a young man died…. and his family managed to get this in the public eye.

I’m pretty fucking angry because at the last Partnership Board meeting the report from the LD commissioner into “what we are doing in Oxfordshire post Winterbourne” would never have even mentioned the CQC report into STATT, or Connor’s preventable death unless we’d raised it as “the elephant in the room” (this was before the report came out)

And yes!…I’m pretty fucking angry at all of them right now because none of them come out of this well. To say I feel lied to, let down and disappointed doesn’t come close to how I feel…and yet I’m made to feel bad because we won’t work with them!

And, whilst I completely get OCC’s and the CCG’s nervousness and appreciate they want to do everything they can to restore trust and improve the current situation, my feeling is they should be thinking long and hard about whether this organisation is “fit for purpose” or could ever be in the future given how they operate. The added complication in all this is that OCC are so “in bed” with SH that their learning disability manager even has a joint post (possibly others to).  They’re so entwined that any separation must seem unthinkable to them. For the sake of people with learning disabilities, their families and their own integrity, then think about it they should!

There are a lot of people being supported by SH in Oxfordshire. There are no doubt some good services and I know some truly excellent, committed people who work for TQ21, but if the team at the top of the Trust have no comprehension of what “good” support for people with learning disabilities looks like, haven’t a clue about personalisation, person centred approaches and not the first idea about how to work with families then how can services improve.

One question during the meeting and a crucial one came from a self advocate with a learning disability and the same one from a family carer… How can we trust you?

Trust is a massive issue isn’t it. It takes a sometime to earn and no time at all to lose. More words from my wise old Dad (and a line I used regularly with my own kids as teenagers …

“I do trust you…but if you betray that trust it will take you years to earn it back”

The fact is I have no trust in Southern Health Foundation Trust and nothing they said yesterday convinced me I ever could. 

 

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