Category Archives: Health Service

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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The Bonny Blair Award for Cupidity, Spin and Evasion

The Clear Winner by a Country Mile.

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Since first getting involved in the campaign to win Justice for LB, I have tried to believe that no hospital trust could be entirely without principled leadership. I kept hoping that somewhere in the management and governance of the organisation, there had to be somebody who was prepared to ask awkward questions and not be satisfied by generalities, corporate spin or glossy awards.

I admit defeat.

I’ve seen a lot of burying bad news and economy with the truth in my time, even been party to it on occasion. I’m no saint.

But even I cannot credit the calculating and bare-faced shamelessness of the treatment that LB’s family have experienced from the Health Trust responsible for the preventable death of their healthy son.

LB’s “mum” – never referred to respectfully by her professional title, Dr Ryan – was an immediate target for undermining and defensive suspicion. She committed the cardinal sin of having an honest, outspoken blog, in which she from time to time used strong language. She was also outspoken about her grief and distress, and refused to see these as unreasonably extreme. She didn’t want to be helped to conveniently “move on”. She howled and stormed online.

No wonder she was identified as a dangerous hazard. She and her sympathisers had to be silenced, obstructed and discredited at all costs. Surveillance called for!

As her spontaneous campaign for justice sprouted and grew, other worrying data and cases came to light. This does not seem to have alerted anybody governing the Health Trust to the likelihood that something, somewhere in their organisation was badly wrong. Rather it gave rise to renewed efforts to fight off any such suspicion, by fair means or foul.

So where does the story end?

There’s still a chance for someone decent at the Health Trust to suggest an alternative approach.  Something other than rendering life so unendurable for grieving families that they give up and go away.

I would love to think it might be so.

Other than that it’s the long slog through all the legal procedures to force the Trust, kicking and screaming every step of the way, to face the fact that the award they most richly deserve is the one in the title here above.

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It Was Always Thus

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As I follow Sara’s terrible account of her slow ongoing torture by the Health Trust whose systems and employees caused her son’s preventable death, I am continually reminded of Dickens’ Bleak House, the first book I studied when I went to university.

It might seem a depressing choice, but it is a good preparation for dealing with the law and other public bodies.

Sara, in her last post, asked how people experience working for public services today.  I fear many of them would recognise Dickens’s Court of Chancery all too well. Cases drag on interminably,  “complainants” become increasingly desperate, their anger either fading into depression, or taking over their lives to the detriment of every other facet of their existence. Relationships break down under the strain.The only beneficiaries are the legal firms growing fat on fees.

Yet today’s LA and Health Trust employees surely cannot be likened to the miserable clerks inhabiting Dickens’s dark world, aware of the situation and sufferings of their clients, but powerless to make any change?

While today’s offices may be brighter and have more ergonomically designed seating, power relationships still remain the same and all the information technology in the world doesn’t change that. Basically, just like Bob Cratchit, employees do what they are told. They know from the example of whistleblowers that, if they don’t, all the employment legislation in the world won’t protect them from being rendered unemployable.

In any office there are nasty people who will take advantage of every regulation and directive to be deliberately obstructive, just as there are others who will do their best, within the constraints of their situation, to be helpful. The majority simply grow indifferent.

That is why #deathbyindifference is so accurate.  Indifference is the default setting for any institution where the majority of employees feel little commitment or calling to their work, where they are powerless to change things and/or have cut-back practises imposed upon them. Patronised (at best) by their employer through tawdry rewards and dumbed down “training”, they soon grow cynical and bitter.

No amount of external inspection or internal paperwork can safeguard clients if the workers simply don’t care. Situations go wrong because nobody bothers to check or to follow up some concern in a timely fashion, or to make sure some point of information was accurate. In the end, somebody lies dead.

In Bleak House Dickens decried the indifference of his own day

Dead, your Majesty.  Dead, my lords and gentlemen.  Dead, Right Reverends and Wrong Reverends. Dead, men and women born with heavenly compassion in your hearts.  And dying thus about us every day.

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Yet we don’t live in Dickens’s times. Change has been made for the better. It was brought about by the determination and campaigning of individuals who cared. Those who campaigned to force the law to take children out of the mills and the mines, to free the enslaved, to educate the poor.

In JusticeforLB, and JusticeforNico, we have a campaign for our own age. It is daunting and depressing at times, but we tread in the footsteps of all those who battled against the entrenched practices and injustices of the past.

It isn’t easy.

Fighting for the little people never was.

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Rainy Days and Risk Assessments Really Get Me Down

Life’s Lessons 12  on Different perspectives on safety & protection

Today it rained. This was a nasty shock. Yesterday the local beach was so busy we couldn’t get served at the beach bar.

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Oddly enough, this made me think about attitudes to safety, protection and risk assessment.

Here a properly rainy day happens only now and again. A few days’ continuous rain merits much comment and discussion. Grey skies and solid, day-long rain are the exception rather than the rule.

As a result nothing is planned with rain in mind. (For example, the new metro flooded so badly it had to be closed and reconstructed.) Streets turn into temporary rivers. Things leak. Road surfaces resemble skid pads. Minor accidents proliferate as the driving population takes to its cars. The carless retreat into rainfall hibernation.

Yet, to Northern Europeans, it’s a mild wettish day, nothing to cause the slightest drama, at the very worst a minor inconvenience. No panic!

With regard to safety, however, the attitude is the complete opposite. Here, they only seem to pay any attention to risk, if you upset someone in the local council offices and they reckon they can fine you for it. They’re very short of ready cash nowadays at the Town Hall.

The side wall of our eight storey apartment block was painted by one man abseiling down it with a big paintbrush.  He couldn’t manage the front balconies, so the Community (ie Residents’ Association) President hired a sort of fireman’s lifting platform and got two of his pals to paint them, mates rates. No scaffolding, no harnesses, no problem.

An elderly neighbour, who took a couple of tumbles on her mobility scooter as she made her daily round of the village cafe/bars, was reluctantly persuaded to take up residence in the local care home.
Now a cheerful young man pushes her wheelchair up to the bar at lunch time. There is a vertiginous slope at the entrance, everybody smokes on the crowded terrace, there is nobody to help her (except the barmaid) to get to the toilet. I can’t imagine what a risk assessment would look like, especially as she is going there specifically for the purpose of consuming alcoholic liquor and calorie ridden fried food.

Last weekend at the beach I met a party of elderly nuns pushing their equally elderly wheelchair dependent charges down the rickety boardwalk to the water’s edge and some of them were smoking! (The charges, not the nuns!) Try doing a risk assessment on that!

Somehow the “protection” industry in the UK seems to have burgeoned into an oppressive, faux-legalistic, narrow-minded killjoy. In control-freak mode, public authorities seek to impose a tedious, long-winded, timorous value system on the powerless. Yet, if anything, we seem less safe where and when it really matters, like nighttime and weekends in hospitals.  Normal reasonable care and sensible attention to basic safety considerations seem to have gone by the board, buried deep in paperwork.

Personally, I’d rather be wheeled down to the seaside on a dodgy boardwalk by a doddery nun than stuck in a smugly safe, box ticked communal lounge with a booming television and a bored carer for company.

And now, I’m delighted to say, it’s stopped raining!

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