Layers of ‘Phil’ and a New York break

A short break in New York last week. Arriving mid-evening Wednesday Rich and I were determined to stay up late to nail the time difference. The hotel bar was packed and we ended up in a two person booth with someone waiting for his mate, Phil.

“Hey, sit down!” said booth mate in a booming voice when Phil pitched up. Shaking us from a firmly wedged in, warm, exhausted, sneaky pre-slumber.

“Nah, I’m good. I’m too fat to sit there!” said Phil cheerfully dismissing the 6 inches of seat on offer and ordering a Four Roses bourbon.

A Four Roses bourbon.

It turns out, Phil, an expansive, personable New Yorker, had worked for 30 years at the Creedmoor Psychiatric Center. Working with people now called ‘developmentally disabled’. So many different labels over the years, he said with feeling, holding his hands up. Reminding me of Joyce Davidson’s ‘More labels than a jam jar’. My exhausted brain puzzled over how we’d landed in John F. Kennedy airport only an hour or so earlier and were now talking to someone intimately immersed in New York learning disability history.

Creedmoor where?

Over a couple more bourbons and with the lightest of prompting, Phil talked about his (working) life. He’d worked his way up from carpenter’s assistant to carpenter to estates director after his parents died in his teens. He was on a countdown to retirement in the next few years with a cracking state pension. His long term aim. He’d stopped making padded cells in the late 80s…

Patients at Creedmoor seemed to be people to Phil. He was concerned about the push toward deinstitutionalisation by New York State because of inadequate community facilities. How can people get their haircut, see the dentist, chiropodist, get healthcare and hang out when they are scattered and isolated? People should be ‘supported to progress’ he said.

What did good look like to Phil? “Managers who are on the phone to me all the time to mend stuff, to sort stuff. They’re the good ones.”

Creedmoor.

I dunno. The strands, the brutality, the human rights breaches, the glaring and yet apparently fine smashing of rights. I mean rights are right, right?

I’m left wondering about the layers of ‘Phil*’ in these spaces. In ATUs and supported living places in the UK. I don’t know if Phil was who he seemed to be. But he seemed to be a decent guy. How much did Phil do? How much did he ignore? Did he call out brutality? Are there gradients of brutality in practice and if yes, how are these measured? And who decides?

Why are learning disabled people routinely terrorised?

Day One (two)

The next day the sun sliced through the freezing air, bouncing in, off and between buildings. We walked, talked, watched, saw and listened with only a vague plan of what to do and where to go. Late afternoon we fell into the Stonewall Inn, Greenwich Village. Where pride began. Happy hour. Over the next hour or so, sitting at the bar we heard first hand accounts about the Stonewall riots, spaces and original places. Tree, the barman, has worked there or thereabouts for more than 40 years.

“I met the queen once in England”, he said, in between serving customers and dishing out happy hour tokens. A mate had invited him along on some London gig back in the 70s. Another customer, an HIV activist, wearing a natty red suit, white shirt and red sparkling tie provided more detail about the riots. He was concerned New York State thinks HIV is sorted now when it isn’t.

Tree came back with his phone. He swiped through to a faded photo of a young queen and a couple of young men.

“That’s me,” he said. Pointing to the back of a tall 70s hair head.

He swiped through a few more photos.

“And here I am in the 80s and, yeah, the 90s”. Extraordinary photos from pre-selfie days.

The Stonewall riots in the late sixties. Fifty years later the bar was heaving, loud and joyful. Phil stopped making padded cells in the late 80s. Why the less than snails pace on change for some people?

When we were leaving, I asked Tree I could take a photo of him. He darted out from behind the bar to be in a (rare) photo with me. He’s about to turn 80.

The next day or so we walked some more. And simply enjoyed. It was a good break.

*

This isn’t about Phil.

Birth and birth days

You’ll [‘d] be 24 today. Wow. Just wow. 24... Nearly quarter of a century. You’ve leap frogged from 18 to 24 while remaining 18. We’ve grown older. Living each of these in between years with steadfastness and some brutality.

You beautiful boy. You beautiful, brilliant and kick ass dude. My blooming tears remain as unruly and uncontrolled and I’m glad. I look at photos and just remember being with you. Hanging out. That’s what we did. We just were.

I can’t imagine what you’d look like now. I know you’d be strong, principled, gentle and kind. Precariously occupying a space in which these characteristics are ignored or tossed aside by ‘services’. Still.

It’s beyond wrong that the simplicity of everyday, ordinary life continue to be destroyed by a lack on the part of the state.

You should be celebrating your birthday.

I despise the utter emptiness of these words.

Birth

I remember when you were born. A ‘birthing pool’ filling up a tiny living room. High sides and an enormous volume of water. A birthing pool [Eh? Where did it come from? There was no internet then.] Was your love of water forged in the moment of being born? Being born. Becoming.

Generating numerous heart stopping moments in life guards across the years. Sinking, submerging and eventually reappearing. With dazzling joyfulness and flicking of that thick mop that resisted getting wet.

Until you didn’t. Failed by a greedy and beyond arrogant NHS Trust which focused only on reputation and dosh.

Birthdays

I was in London last weekend for a Reblaw event you’d have loved. A bunch of knowledgable, enthusiastic, feisty and committed students/lawyers smashing human rights law. It was in Moorgate. Coming out of the tube station I stumbled on people heading for the Lord Mayor’s parade.

The Lord Mayor’s parade.

Remember that birthday trip? The lost day we spent on the bus? Stymied by the Lord Mayor’s Parade… 2010? Eight years ago.

Eight years.

You were all ‘children’ then. Some hovering in the hinterland between child and adulthood. Sucking up the foiled outing. It was a cool outing for you. An amnesty on typical kid stuff by the others. It was your birthday. We were all thinking about you and your birthday.

Three years later I dropped the thinking ball. I still don’t know why. I’ve been accused of all sorts. Working full time. Not flagging up that staff should supervise patients with epilepsy in the bath. I dunno matey. Do you remember when you wanted me to apply for the post of Head of the Metropolitan Police? We chuckled about this.

When you raged about being asked to empty the dishwasher and called on imaginary human rights specialists we laughed. We didn’t notice when the large, heavy based saucepan of nosh, nourishment, love and family life suddenly went cold.

Your nephew is one this week. His mum posted a montage of photos and videos on Facebook. So blinking cute. You’d have loved him. Asked endless questions about him. Stood protectively over him like you did your classmates who needed tube feeding at school. Living your life as much as you could in line with your values of what is right, family and love.

Love

I miss you with an ache, a yearning, something impossible to articulate.

I retreat to a space of joyful memories and an overwhelming sea of love that buoys me in the moment. Thank fuck. A space I will guard with every fibre of my being. Wide open spaces of sky, beauty and being together.

A heavy based saucepan I will not take my eyes off.

I received an email earlier today that underlines this wondrousness. I don’t think the author will mind me quoting part of it.

[….] when I’m not sure if I can pull off what I want to say, if I’m in danger of losing my nerve or of going with the flow, I think about Connor and I just say something.

Paraphrasing Rosie from back in the day; you made us feel safer.

Love. Just love.

The Job Interview

I recently applied for a new job. A first since LB died. Over five years of campaigning, hearings and time off. Illness. Work derailed.

The end of death investigatory processes neatly dovetailed with Tom (our youngest) going to university in September.

Unexpectedly home alone space. Time. Time to work. And a relevant job. Timing and fit.

What fit though? Troublesome sweary ranter, thorn in the side of NHS bodies/big charities, determined activist outsider. Or an informed, critical academic?

I dusted off my CV with eyes firmly clamped closed in places. LB sitting squarely at the centre of it all. I can’t ‘weigh up’ his death against the Research Exercise Framework (REF). Academic marker of apparent ‘excellence’.

One referee in discussion about my application said:

I don’t know whether to focus on your CV being robust despite what has happened. Or think about what you could have achieved…

No. I don’t know. How the fuck could any one know?

Does academia have space for activism? [Not really]. How does fit work in practice? Conventional compassionate leave doesn’t fit with our experience. It’s not a one off chunk of time to grieve. More barbaric, drawn out processes – police investigation, GMC and NMC hearings, inquest and HSE investigation – involving consistent and repeated dragging back down and compounding horror.

Six years ago I had a reasonably bouncy, bright academic future.

I was shortlisted. I prepared carefully and thoroughly. The two nights before the interview involved terrible (and unusual) nightmares and long periods of wakefulness. The night before I ‘experienced’ an earthquake on an apparent Italian island in such graphic detail I woke feeling I could write a substantive list of what to do and not to do in the event of such a catastrophe. Grimly devastating.

The interview process involved a lengthy presentation to departmental staff in the morning and interview in the afternoon. The presentation seemed to go alright. Warmth and interest from potential colleagues. Entering the same room three hours later I felt ok until the first question. The room was suddenly boiling hot and felt like it was shifting. I couldn’t think. I began to stare fixedly out of a window that was opened and then shut because it was too noisy. My answers incoherent or worse until gently coaxed by panel members to produce something resembling sense.

Then it was over.

I left making cheerful and appropriate noises. I rang Rich to say I didn’t think it had gone well and caught the train home. At Crewe out of the blue Sooty tears kicked in and continued to Oxford. I wasn’t ‘crying’. More leaking seeping fluid at a rate that was impossible to mop. I just let them roll.

That night and the next day I felt utterly shite. Traumatised. Revisiting my answers which became worse in my mind. I felt intense sadness wondering if the MPTS cross-examination was going to haunt me forever. Were the ‘investigatory’ processes going to become more devastatingly damaging than LB’s death? [Howl]

Over the weekend with visits from the kids and others I largely forgot about The Interview. The experience occasionally revisited with a mix of groaning, humiliation and laughter.

This morning I spent some time photographing plants in the beautiful late autumn light. Peaceful, reflective activity. Capturing cheeky kickass and forthright daisies and astonishing colours.

I didn’t get the job. I didn’t make a strong enough case for the fit between my research and the post.

Reputation, reputation and reputation (and a truly stunning sunset)

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A sunset to stun and silence in awe this week. Photos here are unedited other than cropping. Taken from our bedroom window. The bedroom LB and Tom once shared. A room once filled with happiness, lego creations and die cast models.

It’s been a stunning and silencing week in other, less good ways. On Tuesday, File on Four first aired Lucy Adam’s investigation of Transforming Care and the experiences of young people incarcerated in Assessment and Treatment Units. A truly chilling listen [available here] for so many reasons. Not least hearing 17 year old Bethany sing a Bob Marley song to her dad on the phone from seclusion. Bethany has been in seclusion [locked in a room and fed through a hatch] for months now under the ‘care’ of St Andrews (non) Care. At the time of recording, she had the inside of a Bic biro embedded in her arm for three months. Yep. My brain kind of juddered and shuddered on hearing this detail, unconsciously parking it in a whole new ‘must have misheard’ folder for minutes before other listeners raised it on twitter.

St Andrews were the subject of a Channel 4 Dispatches film Under Lock and Key a year ago now and continue to bludgeon the word ‘care’ with remarkable indifference and extraordinary reward. Supported by commissioners shelling out £13k a week (yep, £13k a week) for casual violence and brutality on young people.

Chris Hatton, who worked with Lucy on the background to the programme published an analysis of restraints, assaults and self-harm in in-patient units. Not an easy read.

[As an aside, we walked passed the Birmingham outpost of St Andrews last Sunday during a #CaminoLB walk… the place was a like an apocalyptic film setting with no sign of life.]

atu

Bethany’s dad joined twitter after the programme was aired and has been filling in details about the experiences she (and her family) have been forced to endure. Walsall local authority are Bethany’s ‘corporate parents’ and by late week they stepped up to engage with unfolding events. Not with the Bic pen or Bethany’s incarceration/hatch feeding but her dad’s new social media activity. They took out injunction against him because he included a photo of her on his profile page.

Instead of working with Bethany, her dad and others who know her, in order to provide effective and supportive ‘support’ to enable her to live an independent and meaningful life, St Andrews are choosing to trouser around £600k a year to generate and sustain a battle which Bethany is guaranteed to lose and continue to lose.

[I can’t even begin to imagine what this experience must be like. Experiencing sustained state sanctioned power and brutality, with no recourse to comfort, loving or any sniff of rescue… Aged 17.

Sticking a Bic pen in your arm makes a kind of sense that sickens me to the core.]

DSCF5907

Staying with local authority monstrousness albeit at a lesser level, an academic colleague tweeted earlier today asking if it was common practice for local authorities to ask to run research findings relating to the social care they provide through their comms department. Wow. Really? A public sector body thinking they somehow have the right to ‘check’ independent research findings funded by another public sector body. This was around the same time as Brett Kavanaugh was confirmed to the US Supreme Court. Grimmer than grim.

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Finally, the Shrewsbury and Telford Hospital NHS Trust failings, documented by the brilliant and committed journalistic work of another BBC social affairs correspondent, Michael Buchanan, continue to grow as families come forward. Buchanan, who has been following this story for 18 months yesterday tweeted:

buch

Once again, a government body grimly and blatantly ignoring human pain, prioritising reputation over failings and any whiff of improvement or change.

What a week.

[Postscript: I’ve somehow missed approving a wedge of comments on this blog over the last few weeks. Sorry and thank you, as always, for contributing sense and thoughtfulness to these pages.]

“Ensure the toilet door in the section 136 suite at Antelope house is replaced quickly”

Earlier this week, Rich was out and I was home alone. The growing condiment pile felt right and a deep late Autumn sunset beckoned. I grabbed my camera and headed to South Park. I bumped into a few people I knew walking down there. Brief, warm and casual catch ups. Heading off between each with an eye on the sun. Despite knowing from a newly discovered nerdy site sunset was at 6.52pm.

Across the park there were smatterings of students/freshers, young people and others. Being or pounding across the park in serious running strides, sitting, walking, talking, laughing and playing games. Loosely shared eye and phone action on the slowly setting sun.

I dipped down to dandelion level while waiting.

It was quiet and spectacularly beautiful.

Walking home [after the reported 6.52 sunset and 30 minute twilight window] I felt peaceful.

The next day my phone rang. The latest Care Quality Commission inspection of Southern Health (Sloven) was embargoed until Friday. Ah. Ok… Sloven. A Trust with an astonishingly grim back drawer full of failing CQC inspections. A Health Services Journal award winning CEO (2011 from memory) who doshed a mate millions before disappearing with a £250k pay off back in 2016.

Yep.

All that still trips off my ‘you effectively killed my beautiful, beyond loved son’ tongue. And it will continue to do so until I really understand why.

Back in March we naively thought the outcome of the Health and Safety Executive criminal prosecution and £2m fine was a seminal moment in NHS history. A shot across the bow of all Trusts. A judge pulling no punches in his ruling. Generating critical scrutiny across the health and social care provision of this crapshite trust and wider. Good care, ligature points, care plans, medication storage, staff supervision and so much more sorted. These are basics after all.

Reading this latest report generated yet more tears and distress. How low can you continue to go in providing ‘health’ and ‘social care’.

The inspection in June 18 generated a warning notice around the safety of young people in a Southampton based unit. A warning notice around safety.

Five years after our son drowned. [He drowned]

And so many others have died.

The Sloven exec board are still stretching out their entitled legs. Apparently kicking any whiff of a negative inspection report into the long grass. No determination, commitment or even interest in trying to own these continued failings.

Reminding me of those early, baking hot July days. Almost five years to the day swatting away the CQC inspection like they did with LB’s death. [He died]

There were 20 breaches of legal requirements that the trust must put right. We found 74 things that the trust should improve to comply with a minor breach that did not justify regulatory action, to prevent breaching a legal requirement, or to improve service quality

We issued seven requirement notices to the trust. Our action related to breaches of 21 regulations in seven core services.

I dunno. Reading it I jotted so many notes. Bashing on the keyboard. Scratching furious fucking pen to paper. So much so wrong. Still. Beyond wrong.

The trust had not completed the anti-ligature work at Leigh House (identified as needed in previous CQC inspections) which posed a significant risk to young people and was not being adequately mitigated against.

Governance systems did not always provide robust assurance to the trust board about issues within services. For example, we found the board were not cited on staffing issues in some services, low levels of staff supervision, poor compliance with care planning and an inability to provide accurate restraint data. 

And more:

Poorly written and stored care plans; no patient involvement in or knowledge of care plans; poor note keeping; not following the MHA; lack of staff supervision; inappropriate medication management and storage; risks to young people in MH services; lack of hygiene and broken equipment; issues around privacy and gender; safeguarding issues; ward temperature issues; lack of competence in syringe driver training.

The same old and more. Five years on.

Lives tossed out like rubbish. With no consideration. Reputation ruling the roost still..

This sentence strangely leapt out, from the 54 page report.

Ensure the toilet door in the section 136 suite at Antelope house is replaced quickly.

Sort the toilet door. It only takes a few fucking hours.

Hancock’s half hour and condiments

Been kind of distracted by a focus on condiments this week in our newly, unexpectedly empty home. A tweet about condiment gathering earlier generated a cracking list of missing flavours and textures. Thank you.

Meanwhile, Matt Hancock, Secretary of State for summat and summat gave his first patient safety talk earlier today. It took months for the Department of Health/NHS England to comment on the findings of the #leder review. They were, however, able to publish the text of this talk immediately. Kind of extraordinary really.
Without wanting to give any spoilers, it’s seriously shite. (Comments in bold.)

Thanks for having me today.

Anyone who has had family members needing care knows what it feels like to sit and wonder whether or not someone you love is going to be OK. You take it for granted that the care you receive will be safe, but sadly we know that’s not always the case.

Crumbs. Bit all over the place here. This is the guy who called health professionals ‘carers’ the other day mind.

Ensuring patients are safe underpins everything we do. I’ve set out my early priorities – workforce, technology and prevention.

What does prevention mean?

Patient safety is the golden thread that runs through all of them.

Eh? Golden thread? Why? How? What do you mean? Did you initially forget patient safety?

I’m fresh off the night shift with the fantastic staff at Derriford Hospital in Plymouth so forgive me if I look a bit tired!

White noise.

The compassionate and good-humoured nurses, doctors, managers and paramedics I met all told me the same thing: they focus relentlessly on patient safety.

White noise.

They said they need safe systems around them. Opportunities to learn from mistakes are crucial. And a culture where staff are empowered to speak out when things go wrong.

In my first few days in the job, I agreed with Dr Aidan Fowler, the new NHS Director of Patient Safety, that the new national patient safety strategy will mean safety is cemented into our long-term plan for the NHS.

NHS Director of what? [Just googled, he’s NHS Director of Patient Safety of NHS Improvement.]

What does ‘safety is cemented into our long term plan mean’? What do these words mean Matt? None of these words mean anything.

I want to pay heartfelt tribute to Jeremy Hunt, who led this agenda and drove it for so many years. Be in no doubt: we will drive it for years and years to come.

How much longer do you anticipate driving an agenda for patient safety? Do you not work to clear, measurable outcomes? Surely you should be looking to removing the need to ‘drive’ stuff not boast about driving it for years.

We’ve made huge progress over the last few years. The CQC is internationally recognised for its inspection regime – driving up standards across the NHS and improving care for patients.

Is it? Where’s the evidence?

Patient Safety Learning have put forward a very positive set of proposals. Dr Fowler will soon set out an exciting and powerful vision for patient safety over the next decade. Every patient – whether in hospital, at home, in a GP surgery – expects compassionate, effective and safe care.

Who or what are Patient Safety Learning? Why are you talking at an event organised by this group? What is exciting and powerful about expecting ‘compassionate, effective and safe care’? There’s nothing new here.

To achieve that, we need to improve learning, we need to better shout about the work that the best trusts are doing, and the NHS must be as open and transparent as we can.

Christ. Who wrote this? You are saying nothing new incredibly badly.

Commitment to learning

There are many figures I could quote – numbers of errors, adverse events. But in some ways they hide the real issue – which is the impact on people and families.

A bit of actual evidence would probably be useful here. So far you’ve demonstrated no evidence. Just words.

I won’t ever forget, James, the hot summer day you came into my office in the department overlooking Parliament and told me the sad, sad story of Joshua. We cried together, because nothing can bring Joshua back. And in so many ways the huge progress on patient safety is his legacy. James, I pay tribute to your work, to this series of conferences, and to your publication today which is a blueprint for the change we need to see.

Eh? James? James who? The same James who organised this gig? Can we have a bit of transparency around your involvement in this event? Chumminess is deeply unprofessional and concerning.

We’ve heard today of the things we can all learn from those tragic events at Morecambe Bay. We’ve also heard of the emerging lessons from the first few HSIB investigations.

These lessons are vital. We must learn from them in our quest to make the NHS the safest healthcare system in the world. And we must apply those lessons to the whole health and care system.

‘Those tragic events at Morecambe Bay…‘…emerging lessons from the first few HSIB investigations’. An exemplar in a light touch Hancock talk and more words. Just words.

Safety is not just about telling people to do better. Patient safety is about accountability, not blame. It’s an irony that to build a safer system we need less of a blame culture.

When is safety ever about telling people to ‘do better’. We saw a tot riding one of those wooden bikes without peddles across the road earlier. He got a bit of speed on and his mum, some way behind, started shouting ‘stop!’ to him. She didn’t shout ‘do better!’ The poverty of understanding, knowledge and engagement here is woeful.

Instead, we need transparency and accountability in a positive culture, where people can have the confidence to be self-critical, because only then will we get the continuous improvement. And we need to improve the systems and processes that support staff. All with the goal of minimising human error.

Words.

The Learning from Deaths programme has been a major step. It means trusts better understand where care needs to improve. And it says trusts must have proper arrangements for learning from deaths of patients including, crucially, supporting and engaging with families.

Words. Meaningless words.

And from April, medical examiners will significantly overhaul the way we learn from the care given to patients who die. They will confirm the cause of all deaths that don’t need to be investigated by a coroner. Bereaved families will be better involved and offered more opportunities to raise concerns so we can ensure that we learn from mistakes and more families don’t have to go through the agony of unnecessarily losing a loved one.

Christ Matt. Do you not think about any of this stuff before saying it? And those listening, do you not critically engage with what he’s saying? It’s not happened so far and it certainly won’t happen magically from April. Do you have any understanding of concerns around the coronial process? Around Prevention of Future Deaths reports disappearing into the never never? Introducing medical examiners (and the myriad questions around this role) won’t lead to better involved families.

At a national level, the Healthcare Safety Investigation Branch is a world first. It uses independent professional investigators to get to the root cause of some of the most serious patient safety incidents.

HSIB CEO Conradi earlier today spoke about the lack of knowledge about and engagement with this body (because it’s also shite and doesn’t have a clue about communication). And it ain’t independent.

But I still want to go further. We will set up a new independent body to conduct investigations.

We have published our Health Services Safety Investigation Bill in draft, and I want to hear your views on how it should work.

And I want to ensure Professor Tim Briggs’s excellent work on ‘Getting It Right First Time’ helps us spread best practice on patient safety across the NHS.

The National Clinical Improvement Programme is emulating this approach at a consultant level. I was really impressed to see there’s a way for doctors to be totally upfront, sharing their individual clinical outcomes so they can learn from each other.

Eh, new Bill? Briggs? National Clinical Improvement Programme? You’re skittering around stuff quicker than a skittering squirrel. Slow down. What do you actually mean? What are you talking about?

I also know that there’s often a case of information overload. Multiple patient safety alerts about a huge range of issues, meaning it’s hard to prioritise which matters the most.

The irony. The fucking irony…

So Aidan Fowler will head up a group of experts who will help you understand the clear actions that need to be taken, protecting patients from the most serious risks.

Who? What group of experts? What ‘you’ do you mean? Health professionals? The public?

Opportunities of technology in health

Hancock suddenly switches on here and begins to talk with a bit more confidence.

Finally, we must harness the power of data and technology. IT issues can lead to patients being given poor care because systems don’t communicate. Ultimately lives can be lost.

Such blatant disconnect/hobby horsing here. We know lives can be lost. You’ve touched on this above remember.

We need to use cutting-edge technology to deliver safe, high quality and patient-centred care. And we need to use transparent open data to be able to spot anomalies that might indicate systemic failures. We’re moving towards full roll-out of electronic prescribing and medicines administration in secondary care to extend inter-operability and reduce medication-related error.

On a roll Matty boy, on a roll. Safer ground (ironically) from the above fudge stuff.

Our new Patient Safety Incident Management System will improve how we capture and spread the insight that we can gain from incident reporting in the NHS, harnessing the new opportunities for analysis that machine learning can offer, to ensure our safety intelligence remains cutting edge.

This ain’t the answer.

And we must – we must – improve the way we spot sepsis and save lives starting with our new ‘suspicion of sepsis dashboard’. Sepsis is such a devastating condition and I’ve been so incredibly moved listening to stories from families who have lost loved ones. We must do all we can to stop it.

The new dashboard will measure the number of patients who come to hospital with serious infections, and give quick information so doctors can see which of those infections cause patients to deteriorate very quickly and help them understand which treatments are most effective, and how to intervene quickly.

In the future, all this data will be used to help analyse which infections most often lead to sepsis. It is yet another example of how technology has the potential to improve patient care in the NHS when we can get the systems to talk to each other. And I’d like to thank the clinicians and experts at Imperial who have helped develop it. It is the next step in the NHS’s fight against sepsis. But we need to go further.

No comment.

No complacency

Improving patient safety is a determined and unwavering commitment for us all. We must constantly strive to listen to patients and their families and listen to staff so that we can learn from mistakes, be innovative and continually improve.

We need a culture of humility, openness and learning. There is no room for complacency.

I want every one of those staff who care for patients to be able to work safely and deliver safe care. I want patients and their families to have total confidence in the care they receive. I want the NHS to rise to the challenge of being the safest health system in the world.

That is our goal. We can achieve it. And I look forward to working with all of you to get there.

The end. Zero confidence in this man achieving anything meaningful. A jumble of poorly written, ill informed and empty words.

An inventory of stuff, silence and grubby feet

I’ve gotten into the habit of looking at family photos with a (love drenched) forensic lens. Trying to remember the moment, the meaning of the moment, bits around the moment… the colour, detail, design and detritus. The grubby feet.

Those grubby little feet.

“Plain tops, different coloured plain tops if possible. That’s all,” said the photographer cheerfully in advance of Rich’s surprise 40th birthday photoshoot. We sorted this instruction with plotting and excitement. Magic captured in the glow of the photo. I missed the finer detail at the time and for years. The earthy, organic, dirty detail.

Give me those grubby little feet to hold for just one moment more… please.

I love photos. I’ve always loved photos. Now I examine peeps, objects and stuff in and around photos. Peering beyond, at the outer edges of the image to try to see more.

When someone dies unexpectedly (maybe any time someone dies) you’re left trying to make sense of, and hold on to, stuff desperately. Precariously. Trying to keep the person, not alive because you know they’re not, but real and crystal clear.

This week Rich and I have been home alone. Unusual silence. Quiet silence. He found a (rare) photo of me with Tom as a baby. On a family day out. London Zoo yonks ago.

The memories. The wonder. The logistics. The weather. Stand out moments. Remembering getting home after. Tired, grouchy, overwhelmed kids. Shortcuts and grubby feet.

“Blimey,” I said, looking at the photo. “I can actually remember eating those sarnies…” [Plain. Cheese. No frills. Sliced (by us) cheddar].]

I’d forgotten about the top I was wearing.

“I always liked that top”, said Rich.

“Where did it go?” I wondered.

Bulk buying Weetabix

Tom’s off to Sheffield University today.

The tears started in a supermarket aisle a week or so ago. I’ve been kind of distracted by the timing of the #leder non-response published this week. Pre-publication leakages, conversations and ever present rage. ‘Campaign’ shite as ever bleeding into and polluting key moments. Life moments…

Weetabix

Seven year ago (seven years…) when Rosie went to university I was in pieces. I was a wreck. Blissfully unaware how deep ‘in pieces’ can go.

Will and Owen went under the wire almost, getting degrees with/despite a backdrop of the inquest, other hearings and so much more.

The supermarket thing was around buying cereal. I went to get the bulk pack of 72 Weetabix. Tom’s been a regular daily sixer for years…

‘We don’t need a big pack’, said Rich. ‘Tom’s going to Sheffield on Sunday’.

Nought to 10 on the Sooty tear front.

Eh? How? When? What?

The aisle dissolved.

Years ago Tom said he’d like to live in a house in which the cereal didn’t fall off the fridge when it was opened.

How did we leapfrog from falling cereal boxes to death, bereavement and a massive fuck you fight? Getting to an empty home without the tumbling, bumbling, brilliant bunch of pups who have taught us so much about life, love, decency? Where did the years go?

I miss LB so much it’s sometimes like a kind of careening thing that ricochets (is this a word?) off discordant surfaces and dazzles and blisters an unbearable raw pain. Other times I hold him so fucking tight in my heart I feel the warmth, power and love of an elephant march that brushes aside the relentlessly offensive and grotesque actions of those who should know better (and I suspect do).

Sheffield

Will, Owen and Owen’s partner Catherine pitched up unexpectedly yesterday. They all rock ‘siblingstuff’ in a beautifully understated and full on love way.

Footy watching, Fortnight playing, nosh and banter. I cooked, crocheted and cried.

We’ve landed an ’empty nest’ card we never expected or anticipated. And a set of grown up kids who I love off the planet.

Tom, have a brilliant, extraordinary time at Sheffield.

❤️

Crocodile tears and the ‘do nothing’ advice

Early morning, a column by Clare Gerada appeared in my twitter timeline. Gerada is an ex-chair of the Royal College of GPs so no fly by night. She campaigns (as part of a heavily, heavily NHS England funded gig ‘Practitioner Health’) about doctors’ mental health. This week there has been coverage of doctor suicides with some loose reporting of figures (there were 81 suicides not 430*). Gerada is trying to extend the Practitioner Health service beyond London.

I dunno. You can sit on either side of the fence, or on it. As is too often the case with the NHS following the dosh is an instructive exercise.

‘Sensible advice’ say some replies to Gerada’s column. ‘Best advice I’ve ever seen…’

The heading kind of made my eyes water. Those blooming tears. Still.

Do nothing… immediately.’ I can only now imagine this ‘luxury’ over the past five years. There is no space to ‘Do nothing… immediately‘ for families. We face years of unrelenting, unremitting fighting, policing, and uncovering. Pretty much every NHS related scandal is the outcome of persistent, committed and astonishing actions by families and their allies. Activity that allows no downtime in a grief drenched space.

‘Do nothing… immediately’

‘When a complaint lands on your desk…’ says Gerada. Deliberately disembodying the ‘complaint’ from the person making it. And the space in which it materialises.

The person (human) who probably never dreamed of making a ‘complaint’ to the NHS. I mean why would you? Why would any of us**? It’s a national institution. A treasure. Free healthcare at the point of delivery and all that…

How often do we actually make a complaint about stuff? About trains, airlines, education, retail outlets, telecoms, restaurants? Why would any of us want to make an official complaint against the NHS? What would make us feel driven do this? Complaints in any setting are important for improving service. Complaints in the NHS are crucial because they involve lives.

For Gerada the complaint isn’t delivered or received. It ‘lands’ on the workspace. Disconnected from action and intent. Allowing her to (brutally) focus solely on the practitioner.

‘Do nothing’, she advises. ‘If you can, take the rest of the day off.’ Take the rest of the day off…

‘Do not rant and rave…’ I still can’t understand why the assumed position of a medic would be to rant and ‘rave’ about a complaint. Getting a 3/5 mark on student evaluations is enough to cause some right old soul searching/scrutiny of our learning and teaching practice at work (even after 10 years). The idea we would leap straight to defence of our practice – to ranting and raving – is baffling.

‘Wait for the first waves of shock to pass…’ Still no consideration of the person or family who made the complaint. Of what they may be experiencing; their pain, distress, grief. The piece descends into a google translate type extract. Clunky. Missing meaning. Swerving on substance. With the odd hand grenade planted between platitudes: ‘At the earliest opportunity contact your medical defence organisation (even if the complaint is trivial)’.

In short, Gerada’s advice seems to be ignore the substance of the complaint, buggar off for the rest of day and get your legal defence ducks in line. She ends with ‘don’t suffer in silence and don’t take it personally’.

Wow. Just extraordinary ‘advice’.

She has previous on complaining.

And clearly remains obdurate on the subject. A road traffic accident… From last night.

What I don’t understand is why there remains little critical (in a good way) and open questioning of what is clearly shite and offensive advice by medics. It’s as if once harm has happened or been done, the drawbridge is raised and the profession becomes a pack.

Where is the thought, the reflection. Humility. Or challenge?

*This is in no way to dismiss, belittle or otherwise every health professional who has died.

** For the sake of transparency, I made a complaint to Southern Health NHS Trust when LB was in the unit. I said they didn’t listen to my concerns about his care. About 5 days before he drowned in the bath I was told it was not upheld.

A day trip to Cherry Tree and a panel of sense

Landmark judgement yesterday when a tribunal found the CQC decision not to let Care Management Group Limited increase the bedroom numbers in one of their houses, Cherry Tree, from 7-10, fair, reasonable and proportionate. Full details are here and are well worth a grim read. I just wanted to say something about the tribunal panel visit to Cherry Tree (from para 48 in the report). Just as a bit of context, 26 people live on this site (which is called Lilliputs) in different ‘houses’ and it was rated good by the CQC in their last inspection.

Unlike commissioners, regulators, providers, social workers and the like, the panel were just people visiting Cherry Tree. They weren’t wearing those fuggy learning disability goggles that erase any whiff of poor provision. They were human.

This is a taste of what they found.

  • It’s a 7 minute walk along an unlit, tree lined lane to the property. Can you imagine walking for 7 minutes to get from the pavement to your home?
  • The only signage was the care providers name. There was no evidence anyone lived there.
  • The fence was so high and made of wire in places that it resembled a young offenders unit. When the panel queried this they were told it was because one person had a habit of trying to run away. ‘But there’s always a minimum of 1:1 support’, puzzled the panel.
  • No smoking signs were dotted about. ‘This doesn’t happen in people’s homes’, said the panel.
  • Cherry Tree didn’t have a small scale and domestic feel.
  • The site is very isolated with only the occasional dog walker and ‘courting couples’ entering it.
  • The timetable of activities was regimented and there was no interaction between people living in the different houses on site. ‘That’s odd’, pondered the panel. ‘One of the arguments for extending the provision was to allow two young men in Cherry Tree more social interaction’. Staff gave different reasons why this was; compatibility issues/lack of staff training.
  • One of these young men was living in Cherry Tree because he enjoyed rambling. In two years he has not been rambling.

The wondrous Dr Joyce from the CQC clearly explained to the panel

It is not normal to have to live with others in order to enjoy the benefits of relationships/interaction.

No. It bloody well isn’t. The panel said despite the protestations of Care Management Group Limited, the place was both a campus and congregate setting and found in favour of the CQC.

This is a brilliant judgement and shows that the CQC and service provision is heading the right way. What needs sorting now, urgently, is how a CQC inspection could give such dire provision a good rating. And how much this is replicated across the country. Again, it points to fundamental flaws in the inspection process.

On a chilling note, the panel raised this point by Care Management Group Limited (the Appellant):

In what other circumstances would you not aim for “best practice”?

It’s shameful this provider has the arrogance to waste time and money challenging the CQC decision. It’s chilling they were trying to extend warehousing in full view. It’s also shameful that the CEO of this bunch of cowboys, Peter Kinsey, is a Board member of Learning Disability England. If we’re to have any confidence in Learning Disability England, they are going to have to hoof him off the board sharpish. Maybe he could use the extra time sorting out the mess that is Cherry Tree/Lilliputs and start organising some rambling jaunts.