Campaign? What campaign? Am I bothered?

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One day, idling around Facebook, I came across the story of LB, the Laughing Boy who grew up into a handsome teenager and drowned in a bath at a National Health Unit, where he was temporarily staying for assessment of his needs.

 

Even somebody like me, with no specialist knowledge, could see this was wrong.  My heart went out to the family.  I wanted to support them in finding out the truth of exactly how and why their beloved healthy son could possibly have died in this way at 18 years old.

 

I was able to help because LB’s family and friends organised a do-it-yourself, hands-on, make-it-up-as-you -go-along, online campaign.  This highlighted the struggle of an ordinary family to get help for a son who needed a different kind of care from his brothers and sister, especially as he became an adult.

 

He wasn’t ill.  He simply had two conditions that could perfectly well be lived with.  He was autistic and he had a form of epilepsy.  Neither should have killed him.

 

Yet the Health Trust responsible for his care said he died of “Natural Causes”

 

This was a lie.  The online campaign (Justice for LB) raised £26,000 to pay for legal representation for the family and after two long years an inquest jury agreed that it was a lie.  They said Laughing Boy died because of neglect in National Health Service care.

 

Not only that.  His campaign uncovered that there had been many, many other deaths, which had never been investigated.  National Health Service (NHS) procedures made it almost impossible for families ever to find out the truth about how their sons and daughters had come to die in National Health care, years before their time.

 

Health professionals who tried to tell the truth about NH services were called “Whistleblowers” and were gagged and/or driven out of their jobs.  Family members who persisted in protesting about poor care were victimised, harassed and even forced to leave their homes.  They lost their life savings in legal costs, attempting to uncover the truth.

 

Many families had just wanted to be able to care for their children, even when they became adults, at home.  Why couldn’t they?

 

Because the organisation of the care system in the UK made it well-nigh impossible for them.  The support they needed wasn’t there.  It was a long, complicated battle to get their children’s needs acknowledged and to find funding.  Procedures were confusing, over-complicated, constantly changing and poorly understood, even by those administering them.

 

Any provision of care was patchy and inflexible.  Your son or daughter had to fit in with whatever was available wherever you happened to live.  Parents and siblings became ill and grew old.  They became poor, because they couldn’t work at the same time as caring full-time for a family member.

 

The whole UK care system became a clunky mess.

 

This is the situation today.

 

This is what we campaign to change.

 

The challenge is to get lots of people actively involved in making good changes happen.

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LB’s Justice Quilt stitched by his supporters & displayed in Coventry Cathedral this month

A bit of culture.

Couldn’t put it better!

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Well now. Much has been written about Mazars report into Southern Health’s failings.   The anguish and eloquent anger of LB’s family has touched me greatly.  Their poise and determination in the face of brutal onslaughts is amazing.

In the last 20 years as a social worker I have seen brilliant practice.  I have seen appalling practice. I have seen lives transformed.  I have seen lives destroyed.  Over the last few months I have had particular cause to reflect on what it is that determines how people are treated by organisations.

Culture.

That’s it.  Pure and simple.  Culture dictates attitude. Attitude dictates quality of service.  Culture is determined by leadership.  Large health organisations and social services departments are top-down organisations.  Hierarchical wilderbeasts, stampeding in discombobulating circles at the whim of their political drivers.

Such frenzied behaviour is destroying services.  It is ruining lives. Its prime focus is on the survival…

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Less Than Human.

Says it better than I ever could.

Who By Fire

It was Grenouille’s school Christmas Concert yesterday.  Always an utterly fab event.  The school has a very strong music department and runs an orchestra and two choirs.  G, love and bless, can’t carry a tune in a bucket, or remember all the words of a song in the correct sequence, but has been an enthusiastic and assiduous member of the choir from the word go.  The wonderful music teacher has given nothing but encouragement and praise for every effort, and has done wonders for G’s confidence and willingness to join in.

Attending the concert this year was tricky.  G had a healthcare monitoring appointment after school, so the afternoon schedule went: leave school; be driven along 10 miles of Rural Road to meet me at Healthcare Facility; get through (longish) appointment; go home; have early dinner; be driven back along 10 miles of Rural Road to Concert Venue in Schooltown; and…

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Just Another Day in A&E

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A&E isn’t called that any more, it’s been re-branded as the Urgent Care Unit, though everyone, staff, patients, taxi drivers, police etc, still universally call it A&E.

The foyer has been barricaded by a detachable crowd barrier, with a home made laminated sign saying ‘Wait Till You Are Called’ in red lettering. A queue stands in the short entrance hall. There is no seating. There is no room for any. People coming out have to push through the queue. The shiny new reception desk is visible at some distance ahead.

Everyone coming into the hospital (other than for a pre-arranged appointment) has to be processed through this medical Checkpoint Charlie. The wide modern atrium (thank you PFI & a permanent financial deficit) is next door.

The A&E entrance, sorry, Urgent Care Unit, is tacked on at the side as a kind of brick hut afterthought.

We make it to the desk. The receptionist can’t hear or understand. Grandpa has a hoarse post surgery voice and can’t speak loudly. There is smeared perspex security screening and no microphone. I speak loudly and clearly. She asks me Grandpa’s religion. I say C of E for the sake of simplicity. She can’t find it. “Church of England?” “Christian?” “What choice is there?”

Hopelessly I explain that he was told to go to General Surgery who are expecting him, but I already know the answer. Everyone has to be processed through A&E, sorry, Urgent Care. We’ve been trapped in this Kafkaesque hell-hole of a system before.

We wait 2 hours to be seen by a nurse who takes bloods, puts in a cannula and tells us we will have to go back and wait to see a General Surgery person who will be called off the ward. We know what that means. Getting surgical staff off the ward is like prising barnacles off a ship’s bottom.

“It will be a bit of a wait,” nurse warns gloomily.

Thankfully Grandpa does not feel very ill. He just has a pain, which of course might be serious, but he doesn’t feel awful, unlike others amongst the trapped humanity sharing a space too small for the seating squashed into it. He isn’t actually bleeding or nursing a broken bone or collapsing against a carer or throwing up. (There is a stack of cardboard sick bowls considerately placed beside the reception screen.)

The soft drinks machine is out of order. Little children accompanying their ill siblings run around. Teenagers are sent off to the posh atrium shop next door to fetch supplies.

We wait for hours, as do most of the others. To be fair, the lady who is half carried in, actually unable to stand, is allowed through the security door quite quickly.

The television screen above reception plays a loop of information about how well the hospital is doing and how much it has improved, alternating with warnings about seeking treatment for TB.
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The collapsing lady’s elderly husband comes out & is directed by reception to a public telephone on the wall. It doesn’t work. The man waiting next to it gives him his mobile phone.

We are seen by a doctor at 4.15pm.  He does a thorough examination. He says the blood results seem normal, but he would like a scan to be absolutely sure. He tells his trainee junior doctor to set it up.

We are directed to a cramped seating bay in the Observation Area where a homeless man in a hospital gown is fast asleep in a chair. He coughs restlessly . He has not washed for a very long time. I think of the TB warnings on the screen in reception. We wait in the corridor.

At intervals I ask at the nurses’ station what is happening about the scan. I know that after 5pm the department shuts. It’s on emergency call only.

No, it operates 24/7 I am assured.

In the end I go in search of X-ray, sorry, Clinical Imaging. It is deserted, apart for a young man waiting for his discharge from a  disappeared doctor. I return to Grandpa’s nursing station. Nobody can enlighten me. A new nurse didn’t realise Grandpa was there. She enters something on the computer.

I go back to X-ray. The young man, showing initiative, has gone on a doctor hunt and lured one back to the department. I grab him. He kindly checks up for me. No scan has been requested. Grandpa has by now waited 3 hours in the Observation Area.

I go back. There has been change of shift. Nobody at desk. I check computer screen. Grandpa registered as entering at 6.35pm, 2 hours after he got there. Status – awaiting scan. The scan nobody has requested.

A junior doctor appears for another patient. I insist she deal with Grandpa. She apologizes. He can stay in overnight & have scan tomorrow. (Hang on – What happened to the bed shortage? What about the other really ill people waiting there for beds i? What about the homeless man nobody has been near for hours, still peacefully asleep in his chair out of the nurses’ station eyeline?)

“No!” we shout simultaneously. “We’ll go home and come back for the scan tomorrow! Take his cannula out and we’ll be off!”

Young doctor now terribly worried. We can’t do that. We’d have to self-discharge. She can’t authorize a scan for tomorrow. She can only keep Grandpa hanging around somewhere in the hospital till at some point, possibly tomorrow, they might find a gap for him in X-ray, sorry, Clinical Imaging.

If we self-discharge we will have to go through the same A&E route again tomorrow.

“We’ll risk it!” Grandpa says. He’s had enough nights in hospital, to know there’s no rest as you hang around in corridors & chairs being pushed around, as drunks and emergencies are noisily admitted, till someone locates you a bed. “Take the canulla out and show me where I sign!”

As we make a run for the exit, he notices blood dripping down from his jacket sleeve. We rush back to the nurses’ station. Grandpa’s arm looks as though he’s been stabbed.

As the nurse mops him up, she cheerily inquires if he’s on aspirin.

“Yes” he replies.

“You should have told us!”  she says reproachfully.

I bite my tongue, but keep silent. It’s been a long day.

“Perhaps you should have asked?”

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Preventable deaths are not tragic #JusticeforLB

George Blogs

I’ve spent the last fortnight in Oxford live-tweeting the inquest into the death of Connor Sparrowhawk – you can learn more about Connor here:

You can learn about the campaign at JusticeforLB website and you can read the inquest happenings over on twitter @LBinquest. At some stage I’ll write about the inquest process, the amazingly resilient and love filled family and friends of Connor; the forensic attention to detail, care and expertise of the legal team; the smatters of candour juxtaposed with complete refusal to change anything even with hindsight that we heard from witnesses [only the psychiatrist was that arrogant]; and the whole process.

For now I just wanted to pick up on one small [but really massive] language point.

Connor’s death was not tragic.

Preventable deaths are not tragic.

Connor’s preventable death was described in great detail over the two weeks, the time immediately before it and…

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I learnt to sew at primary school. We started in the infants and worked our way painfully from basic stitches and hemming through samplers to decorative aprons, finishing off with reading a pattern and making a blouse at 11 years old.

I never again bothered with these skills till I was 48 years old.

I can remember the day exactly.

I was hugely stressed. My daughter was pregnant with her second child. Instead of blooming, she was always horrifically ill during her pregnancies so my toddler grandson spent a great deal of his time in my office (I had a tolerant eccentric workplace – people brought their dogs in too).

One day I was hurrying past an art shop when I glanced at the window display of cross stitch materials and charts. I suddenly knew what I needed. On impulse I went in and bought a simple kit. Then, after a gap of 40 years I simply took up my needle and started stitching.

Thereafter I never went anywhere without my work. I stitched on the tube, on planes (it was before terrorism & no sharp objects), in hospital waiting rooms, at conferences, discreetly at the back of lecture halls and boring meetings. I entered a new hidden world of stitchers, secretly continuing a centuries’ old female tradition.

I could see why it had continued. Stitching got you through. It looked virtuous and was a creative outlet menfolk couldn’t object to. It was an absorbing object of skill and pride that let you escape the pressures and tedium of domestic life. It got you through the months when your menfolk were at the crusades or on the high seas or off hunting with their mates or about important masculine business.

It took time and patient concentration. It involved the satisfying feel of the materials, the painstaking selection and organisation of threads. There was the designing, choosing and following a complex plan. And the faith that it would come together at the end.

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Because stitching is never a complete picture until right at the end. The different parts of the design don’t achieve a pleasing balance until then. You have to struggle through the tedious, confusing, frustrating bits to reach the finished article.

But, of course, all this stopped when I started blogging for #107 days and #JusticeforLB. I now have a selection of unfinished (possibly never to be finished) work!

I have forsaken tradition for technology.

Though, on thinking about it, the actual processes of patiently acquiring the skills and faithfully sticking to your purpose in order to bring something together are still the same!

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Symbols, Strength, Support and Magic

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In the dim and distant past, when I was fruitlessly trying to warn non- compliant adolescents of the danger of their ways,  I often wished that, instead of lecturing, I could just lay down the cards. A bog standard teacher has little credibility.  (As one pupil in a truly dreadful school acidly commented,  “If you know so much about everything, Miss, what are you doing working here?)

A Tarot reader, on the other hand, is a keeper of the mysteries, a seer, a purveyor of ancient wisdom. 

In the 60s, when such things were terribly hip, I had learnt to read the cards.  I gave it up, because it became a bit alarming how readily and unquestioningly people welcomed their interpretation.

Had I laid out a tarot spread for my sullen teenager and revealed the Tower, one glance would have had more effect than preaching.

The image is worryingly uncomfortable.

But the cards could be comforting too. They could convey the joy of fellowship, the presence of supportive figures and the reassurance that you could survive difficult times to win through.

Sometimes people just needed a symbol. One that said “You may not recognise it, but you have the ability get through this.”

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We all need comfort, support, affirmation and reassurance when faced with cruel blows in life. 

Sadly, the bereaved families facing a battle for accountability and transparency over the deaths of their children are having to find almost superhuman strength when they are at their lowest ebb.  No wonder despair is hard to overcome and the struggle for justice is so hard.

Yet one of the most valuable aspects of #107days and #107 days of action is the bringing together of all kinds of people with a variety of knowledge and practical experience to share their individual insight and counsel, thus building a common resource of support and information.

This is the real life magic, the impetus and the strength that is going to carry us through.

Though an image to help remind us wouldn’t hurt!

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