An honorary graduation

Crumbs. This was last Friday now. A wondrous day, memories of which have almost been punted over the fence with a right old ‘knock the stuffing out of you’ type cold this week. Oxford Brookes University wanted to award me an honorary doctorate. A letter from the Vice Chancellor last June. Blimey. A week before the 2018 graduation ceremonies I assumed someone had dropped out at the last minute.

‘Oh yes, I’m around all next week’ I replied… [always the dependable and practiced filler-in].

The invitation was for 2019. A bone fide jobby.

I headed down to Brookes in early morning sunshine with Rich and Rosie. The day started a bit stressful as I realised I should probably get a copy of my 6 minute speech printed rather than stick my phone to my nose during the ceremony. And Rich pointed out a ladder in my tights.

Mike across the road obliged with the printing after replenishing a print cartridge while Rich bought a selection of tights from the local Co-op (which has consistently featured on this blog).

We met up with my mum and dad outside the main Brookes entrance and got swept up by Beth Hill, Events Manager, who looked after everyone, did a stonking job of erasing stress and made me feel like a legit honorary graduate with her humour, warmth and sass. A walk through the ceremony, gown on, professional photos (the first since I was at school) and non stop pep talk.

There was a moment when she took me into the hall before the ceremony. An unexpectedly rebuilt version of the space I graduated in 18 years ago. A time when life had different texture, tone and colour. And a beautiful young dude bouncing around in it.

Beth had a vice grip of understanding (physically and emotionally) because she does.

What seemed like moments later, a ceremonial entry through a hall heaving with students, families, love, pride, excitement and achievement. Professor Jeremy McClancy (love him) nominated me for the award. In his introduction he said the job of academics is to enable students to become active, critical citizens who act on the world and he couldn’t think of a better example. [Sob] I sat in a sea of memories from back in the day. The enormity of everything, my heart swelling and utter sadness was something else.

Then it was time find the white cross on the stage, be given a framed certificate by Pro Vice Chancellor Anne-Marie Kilday, have the certificate magicked away and pointed towards the lecturn. Speech printed and carefully folded in my pocket.

‘You’ve got this’, said Anne-Marie, firmly.

Yep.

It was an unexpectedly extraordinary day; moving, powerful and fun. Rich, Rosie and I spent a lost and lazy afternoon sitting outside a rooftop restaurant in the sunshine. Eating, talking, drinking fizz and chuckling… We went home and slept soundly spread across settees.

I so appreciate the warmth, delight, support and recognition of staff who taught me back in the day at Brookes. Those rollercoaster years of juggling young pups, study, diagnosis, despair and ways of making sense of what seemed, at the time, to be unthinkable. Years that had a preciousness we didn’t understand at the time. The comments from parents and students on the day were equally warming. A resounding ‘thank you’.

Last night David Harling published his latest animation Not from Where I Stand. More brilliance capturing the strands of service brutality and the awesomeness of people like Connor. This week has seen cracking campaigns/developments #strippedofhumanrights, #homesnothospitals and #SENDnationalcrisis. Movements, action, collectivity and commitment to improving impoverished lives.

Who knows, maybe the tanker is turning.

Beasts, bombs and brilliance

Beasts, bombs…

Last week we witnessed the Care Quality Commission (CQC) prioritise its reputation over the people it’s meant to serve and protect on live television. It was grim viewing. CEO Ian Trentham and Paul Lelliot were hauled in front of the Parliament Human Rights Committee to answer questions about Whorlton Hall (I previously wrote about this here). The Committee published correspondence between Barry Spencer Wilkinson, inspector, and the CQC from 2015 which painfully and painstakingly demonstrates how the Whorlton Hall provider kicked up a stink about Barry’s negative inspection findings complaining the inspection team was too large. Harriet Harman was on blistering form as she picked her way through evidence of a cover up during the session. Lelliot and Trentham blathered on, refusing to answer or chucking blame at pretty much anyone.

‘We have to wait for the findings of the investigation into the 2015 inspection report…’

‘We commissioned two independent investigations into this… TWO’

‘100s of people went in and out over that period and no one spotted abuse. NO ONE…’

After the provider complained, Barry’s report was shelved until a tiny team went in to re-inspect six months later and found lots of good stuff. The published report regraded Whorlton Hall from ‘Requires Improvement’ to ‘Good’. Things like unregulated use of a seclusion room and complaints of staff bullying fell by the wayside until Panorama pitched up three/four years later to record the abuse. [At this point my brain cannot go near what people must have endured in that time or how often this burying of negative inspections happens.]

Barbara Keeley MP has written a cracking letter to the CQC CEO raising numerous concerns.

An immediate outcome of that revolting performance was the resignation via Twitter of four members of the Expert Advisory Group for the current CQC restraint review; Chris Hatton, Julie Newcombe, Jeremy (Beth’s dad) and me. Others may have done so.

And Brilliance…

The following day Rich, Tom, my parents, sister Tracey and hub Jeremy set off for Ross on Wye for the naming ceremony of #ConnorsRig. The backstory to this is that Rhiannon Davies works for Safe Lane Global, an organisation which ‘detects, identifies and mitigates potential threats on land and in water’. Rhiannon and Richard’s baby, Kate, died in appalling circumstances in 2009. Rhiannon and I hooked up electronically a few years ago and spent many hours sharing swear and drink drenched messages of pain, rage and despair as we faced obstruction and worse from the respective NHS Trusts responsible for our children’s deaths.

A couple of months ago Rhiannon emailed me saying that Safe Lane was taking delivery of a new rig and ‘everyone from the c-suite to the drillers and workshop staff would like to dedicate the rig to Connor…’ Just wow.

We tipped up late morning to a boardroom full of treats and #ConnorsRig high vis jackets. [Sob]

Over coffee and homemade cake, Adam Ainsworth, CEO, Paddy and other staff explained more about the work of the company. It was fascinating to hear experts in such an unusual and important area talk about their experiences. We walked down to a nearby field where #ConnorsRig [sob] was parked next to an army tent. With rain hammering down, Paddy talked us through various types of bombs including the beast on the floor they’d detected somewhere in the UK. So many stories, so much passion and commitment.

Next it was lunch during which a barrage of further questions were answered then back to the rig for the red ribbon cutting, a toast to Connor and demonstrations. The afternoon finished with Tom driving the rig out of the field, through the carpark and onto the truck for its return to Kent (a six hour journey). There are brilliant photos and a video [tissue warning] of this wonderment here produced by Richard.

I can’t put in to words what this day and rig naming meant and continues to mean to us. The tears started when I saw the high vis jackets and pretty much carried on into the early hours of the following morning as I thought about how much Connor would have loved the whole thing. Heavy haulage, World War Two ordnance, his beloved London (the rig is small to enable it to access narrow spaces), health and safety… saving lives. So many boxes of joy and intense interest ticked.

I also thought about the contrast between the two days. Senior CQC figures posturing, conniving and obfuscating in response to clear questions by the Human Rights Committee. Demonstrating no apparent understanding (or even interest) that people are brutalised as an outcome of limitations and shoddy practice by the CQC. Little or no decency or integrity to be detected.

And Safe Lane Global staff just doing humanity. Treating us with respect, kindness and generosity. Adam, Paddy, Julia, Ian, Jaymie and others spent hours with us, answering a billion and one questions and giving us a day we will never forget. Memories to feast on forever and the wonderful #ConnorsRig to look out for as it makes its way around the UK snaffling out ordnance and more.

Rhiannon and Richard what can I say? Indefatigable decency and love…. You bloody legends, you.

Thank you.

 

 

The Whorlton Hall disclosures

My blog is developing a bus theme which would delight a certain cheeky chappy we miss off the planet and to the moon and back. I wrote a CQC related post about the shoddiness of Mencrap provision yesterday evening after a longish gap and then, 24 hours later, comes another CQC related post.

After Panorama exposed brutal and cruel treatment at Whorlton Hall recently, the CQC today published the series of edited reports that begin when Barry Stanley-Wilkinson, a CQC inspector, wrote a report about the provision after an inspection in 2015. He found Whorlton Hall required improvement on all domains inspected. The report was not published until today.

We welcome the disclosure today in the rarely seen spirit of transparency. It offers an insight into an inspection process that should probably be chucked into the nearest skip. Coincidentally there was “a large skip within the hospital car park, which contained debris as well as long planks of wood which had large nails attached” when Barry and team visited.

So today we can trace how a CQC inspector writes a report which goes through layers of review. At each stage meaning is stripped back to bordering on the meaningless, words substituted for more vacuous ones (selected by a ‘word coach’ using a quasi scientific tool). The report then, apparently stripped of the layers of editing (audit trail) bounces to a final review stage which, in the case of this particular report, led to it being punted into the, er, nearest skip.

More evidence was needed apparently though it is not clear where that decision came from in the documents released today. Six months [six months] later, nearly 12 months [12 months…] after Barry’s inspection, Whorlton Hall mysteriously received a good inspection rating. And that was history until the Panorama team went in this year.

So what did Barry’s original report highlight?

  • Environmental risks including the skip and parts of the building in which people couldn’t be observed.
  • Incomplete record keeping (including observations) and lack of risk assessment review.
  • Poor quality reporting of multi disciplinary team meetings.
  • Recordings not legible and no treatment or discharge plans formulated.
  • Out of date medication policies and no rapid tranquillisation policy
  • Lack of plans around sexuality and sexual behaviour and poor take up of annual health checks.
  • Inappropriate staffing levels and poorly trained staff who lacked understanding of the Mental Capacity Act and ways of communicating with people.
  • A low stimulus room used without protocols or procedures.

Basically a cornucopia of potential and chilling human rights abuses which were allowed to flourish for another 4 years. Between the CQC, NHS England, Hancock, ineffectual and careless commissioners, limp processes like Leder and self serving and greedy charities like Mencrap, it really ain’t hard to work out what underpins the stark and devastating disparities in the life outcomes of learning disabled people.

I seriously hope the Human Rights Committee are all over this on Wednesday afternoon.

In case readers need reminding of what living lives we all have a right to live look like, here are Dawn, Gina and Jess enjoying a beer after walking 100kms of the Camino de Santiago last March.

 

 

We really need to talk about Mencrap (again)

Struck by the almost radio silence by the big charities over the CQC restraint interim report, Whorlton Hall film and Leder report, I found out this week that Mencap [alleged voice of learning disability] currently have eight supported living services and residential care homes with a ‘requires improvement rating by the CQC.

Eight. Bearing in mind how difficult it seems to get anything approaching a failing rating (Whorlton Hall and St Andrews both had ‘good’ inspection ratings until the shite hit the fan), the Mencrap cluster must be quite something. A quick tot up (by someone better at maths than me) suggests a minimum of 206 people are currently getting sub-standard care from the same bunch who forever call on the government ‘to improve’ things for learning disabled people. The grim irony is almost curling my finger nails back from my fingers.

While they keep on with their relentless self promotion and trying to raise money through terrifying already terrified parents and families, I thought I’d have a look at these eight inspection reports [County House (Swindon), Mencap East Cornwall Support Service, Mencap east Hampshire Domiciliary Care Agency, Plymouth Support Service, Royal Mencap Silverhill Bungalow, Tevershall Bungalow (both in Notts), Royal Mencap Woodlands Residential Home (Norfolk) and Treseder House (Cornwall)] to see what strands of the provision are failing so badly.

Christ. What a thoroughly depressing read…

All eight failed to be well led, 7 failed to keep people safe, 3 failed to be responsive and 2 failed to be effective. I mean how can the voice of learning disability with the groaning resources and endowments they continue to pretty much bludgeon out of families (unsolicited will writing seminar garbage continued to arrive for about 3 years after LB’s death) fail to provide well led and safe services?

A few other low lights:

  • No (or absent) registered manager (3)
  • Issues about staffing numbers/availability (4)
  • Medication management issues (3)
  • Hygiene and environmental issues (6)
  • Problems with care plans/record keeping (5)
  • Problems with quality monitoring (5)

The story told across these reports is chilling. In one service people are so scared of a neighbour they are too terrified to go out. While noises were being made to resolve this the inspector noted it has gone on unchecked for some time. Another place was so dirty a family member commented they wouldn’t let a dog live there. Across all eight the impact on people’s lives extended to little or no opportunities for going out to do stuff the rest of us can do. Tablets and TVs a substitute for activities including watching church services on a tablet. “Records showed one person’s care plan had been updated and reviewed the day before the (announced) inspection”. On questioning it became clear that the service hadn’t been providing the support described for a significant period. An ex-care home now badged as ‘supported living’ was still run as such with pooled budgets and daily menus. When it was decorated one person went home while the remaining inmates were decanted to two caravans for the duration. There were the usual issues around MCA misunderstandings, lack of training and people’s rights not protected.

Eight failing services with echoes of the shite care provided in the home Danny Tozer died in. Failings his parents repeatedly pointed out and even paid for a second provider to come in and train staff. This simply ain’t good enough. You should be trailblazing dazzling support, care and provision that enables people to lead flourishing lives, have fun and do stuff they want to do. With such a bunch of heavily bloated directors you should be kicking that ball right out of the park.

Instead, your focus is on reputation, raising dosh and muscling your way into any media opportunity. I’m out of words. Well other than get your own fucking house in order before you dare to make claims about changing the world for learning disabled people.