Category Archives: Social Commentary

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

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, 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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Expelled from Eden

Myths are powerful.

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Since I’ve been part of Justice for LB and have come to know the other individuals or families involved, I’ve been increasingly struck by the similarities between professional attitudes to the learning disabled and to the old.

Mark Nearly and Sara Ryan point out how those with learning disabilities are regarded as somehow less human, so that their rights are seen as quite OK to overlook.

Well, I’m sorry to tell all you younger folks that it’s becoming worrying similar the older you get. Fear and dread of “care” is rife amongst my age group because, like the learning disabled, we oldies tend to have, or develop, complex medical needs. Older people are also seen as not worthy of certain categories of treatment.

I’d hoped that some older campaigning groups might see it politic to join forces in supporting the learning disability lobby, but possibly active Golden Oldies are too busy making the most of their lifetime’s Indian summer, or it’s just too uncomfortable to confront the realities of being vulnerable in the UK today.

Or perhaps, at our age, we just hope to be mercifully carried off before it comes to that.

When I was young I used to be part puzzled and part amused by my elderly Irish neighbour who used to pray diligently for “a good death”.

Now I find it horrific, that decades later, my generation should do the same, not because of lack of medical knowledge or facilities, but on account of a cruel, systematic downgrading of the rights of the vulnerable to decent, humane consideration.

And it is the cynical abuse of power by the authorities charged with our “care” that induces such disillusion and despair.

I can only liken it to being thrown out of Eden after eating from the tree of knowledge.

But, in our case, the knowledge we have sadly gained is of inhumanity and naked corruption where once we had trustingly believed to find honesty and a desire to serve.

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Vacancy -Monster Fighting Change Agent Required

On “turning things round”

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Before Florence Nightingale, “nurses” enjoyed a deservedly dodgy reputation.  Dickens, always plugged into the popular culture of his time, knew what he was doing when he created the ghastly Mrs Gamp and her dreadful friend.

Caring is a role that brings with it a very dark side. It is dangerously easy to take advantage of the weak and the sick.  It is so simple to blackmail or terrorise them into silence and acquiescence. 

The vulnerable quickly learn that, to get even half decent treatment, you have to be “good”. And good is always defined by the care provider as giving your  “carer” an easy time.

It was bad enough in the past, with gin-sodden, slovenly Mrs Gamp, but now we seem to have created something even worse: a whole monstrous system which is based on not giving the care provider a hard time.

Whether it be the Hospital Trust or the Local Authority or the judgemental Social Work Department, we little people are blocked from attempting to criticise or question. As patients, clients or employees, we are expected to be “good”: to be quiet and compliant; to accept without complaint every idiocy of chaotic administration; every petty cruelty of poor organisation; the endless esteem-sapping disrespect and indignity.

Because otherwise we know we’ll suffer, in body, pocket, mind or spirit, or any combination of the above.

Now Florence Nightingale was a ferociously determined and successful change agent, but she also had a good few things on her side. She was well connected, with privileged access to people of power and wealth. She had a highly successful market image, a sympathetic press and popular support. She was not a little person.

How are we little people going to fight our newly created monster?

I’ve seen institutions change, but it’s a big ask, as they say nowadays

1. You find a leader with determination, endurance and integrity.
2.  You get a board/cabinet/party/pressure group to back her/him.
3.  You get rid of the bad staff by (a) making them work (b) dragging them through disciplinary procedures, tribunals etc.
4.  You promote and reward the good staff, so that the balance of power & influence in the workforce changes, with good practice becoming the norm.

A big ask indeed! We’re going to need a monster fighting change agent, to battle alongside us little people.

Any good politicians out there any more?

Anyone with principles and a bit of backbone?

Situation vacant.

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Better Pens Than Mine

This week I’ve been listening to Dickens again in my audiobooks. I listen when I wake up at night and get bored. Usually they send me back to sleep, but this time a passage woke me up instead.

It was this extract from The Old Curiosity Shop

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” Grandfather, what was that you told me? That if they knew what we were going to do, they would say that you were mad and part us? Grandfather, these men mean to carry us before some gentleman and have us taken care of and sent back.”
“How, dear Nelly, how? They will shut me up in a stone room, dark and cold, and chain me up to the wall, Nell – flog me with whips and never let me see thee more.,”

Dickens was writing in 1840.

This week in England, Thomas, 20 years old, died. He had learning difficulties and had been in an Assessment and Treatment Unit (ATU) miles from home. He had been abused by carers in the past and, when admitted as an emergency to hospital this week, had unexplained carpet burns on his back. His family had been desperately trying to enable him to be cared for in his own community, not separated from the people he loved.

This week a report was also published giving details of the thousands of people with learning difficulties kept in ATUs. Many far away from home, cut off from their families. Many existing year after year, never going into the outside world. Many, it gradually comes to light, ineptly and cruelly treated.

The report’s authors were writing in 2014. 

When I googled The Old Curiosity Shop one commentator described it as a melodrama, too exaggerated for reality…

The Pub That Time Forgot

On community and the lost art of real life conversation
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1963 – the year Kennedy was assassinated – was memorable for me because it was the first time I went into a pub. I was eighteen years old. In Scotland, where I had been brought up, respectable women did not drink in public houses.

When I moved South to the strange new culture of England, there was a pub on the corner of the street where I lodged, built in the Victorian fashion, on the corner of a little street of terraced houses.

It was a “local”. Neighbours dropped by on their way home from work, or just for an evening chat and a smoke, or to escape the children (quality family time not having been invented then).

It had a coal fire in winter, a  faithful clientele – the ” regulars” – and it didn’t serve wine. Ales and spirits were what you got. Women drank a half of lager and lime or a gin and tonic. The bell rang for last orders just before half past ten. Perhaps it was eleven at weekends. I seem to remember it was bit later then.

And anybody from the nearby streets was accepted there. A few had their own particular seats (a bit like Sheldon’s spot) which nobody else could sit in at certain times. If you wanted somewhere to take your arthritic old grannie in her wheelchair or your 40 year old son with learning difficulties,  somewhere they wouldn’t be stared at or made to feel uncomfortable, you went down the local.

Over the years, however, the area was gradually gentrified. The pokey houses, originally lived in by locals or bought by hard up young couples because they were cheap, became highly desirable. Within commuting distance of the City the prices shot up, the upwardly mobile moved in, raving about the quaint village atmosphere – “So lovely for the children, growing up in a proper community!”

The pubs had their carpets torn up, their floor boards sanded, their dartboards banished along with the few remaining regulars, who spoiled the ambience.

All but one.

We were told about it by a neighbour who had come across this relic of the past in his ceaseless quest for real ale. Hidden away in a back street, next to the last untrendified area of social housing, was the pub that time forgot.

We went the first time apprehensively, ready to be disappointed. But as we opened the door the years vanished.

The first thing that you noticed was the noise, or rather the lack of it. All you heard was people chatting companionably, the sound of their voices absorbed by the swirly 70s carpet. No loud music, no television screens, no shrieking young professionals showing off to their colleagues.

And looking around we gradually recognised familiar faces, other refugees from the gastropub, the sports bar and the echoing scrubbed wood standing only spaces, brewery designed to discourage leisurely drinking.

I went towards a comfortable looking seat by the fire, but then I hesitated. I sensed an atmosphere and felt a discouraging stare. I read the signals. I moved away. The man collecting his drink from the bar appropriated the inviting space.

Of course he did. He was a regular.

It was his spot.
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Starry, Starry Night and the Magic

Advent 8 On the power of story

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I was brought up in the cold, grey north where winters were dark and grim. The culture was pretty grim too, in those days. Bars were for the men and they shut at ten o’clock. Respectable children were not allowed to play out on a Sunday.

My friend told me that when she started school, it was arranged she would walk back to her grannie’s for her tea, before going home. On her second day her grannie asked her how her day had gone.

“I didn’t enjoy it very much,” she ventured timidly

“Enjoy!” said her grannie sternly. “You’re not put on this earth to enjoy! We’re here to suffer and be judged!”

That about summed it up really.

So it wasn’t until I was well into my teens that I encountered the magic of light and joy in a well enacted story.

One Christmas Eve a gang of us teenagers went along on to what was known in Scotland as the Watchnight Service. We weren’t particularly religious. It must have been because one of us was the minister’s son and was under orders to go.

I had never been to anything remotely symbolic in a church before. No gilded statues or lavishly decorated altars for the United Free Church of Scotland where I had gone to Sunday school!

But, at the Watchnight Service in this strange cold church, there was silent darkness until, at midnight, the candles were lit as the words of the King James bible were read out and the old story of new life coming into the world was retold.

It was magic!

The symbolism of the midwinter feast was lived out before us. The darkest time of the year just past and the earth turning again towards the sun with the promise of renewal, survival and spring.

Even nowadays, however much killjoys try to wean us away from magic and the power of stories, we still rebelliously trail strings of pinprick lights over our hedges and around our homes. In the midst of the shopping spendfest we still fall under the spell of flickering candles and starry skies.

Somewhere underneath all the cynical commercialism still lurks the ancient desire to celebrate new life and to welcome the rebirth of light into a dark world.

And discover, in the face of all the grimness of existence, a spark of hope.

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