Category Archives: Systems

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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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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On Injustice, Exhaustion and Tough Love

Life’s lessons 10:  Hard choices for hard times
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I used to think that, if people only knew about something going badly wrong, they would mobilise against it.

But I grew up under the lingering influence of World War 2. We were the brave little island that had held out against the evils of fascism and set up free universal secondary education and a National Health Service. We were the dragon-slayers.  We were the good guys.

Postwar childhood games, played out on overgrown bomb sites, always involved shooting down the bad guys to emerge victorious.

It took me a very long time to realise that knowledge alone doesn’t stop bad things happening. You need courage, spirit and commitment to confront monsters.

After reading Kara2008 (whobyf1re.wordpress.com) this morning I got to thinking about LB and all the others killed or damaged by health professionals in one way or another. I’d bet each one of us has experience of family, a friend or colleague affected. There is a stack of anecdotal evidence around. There is research evidence too. Think of the data circulated to hospital trusts about death rates. Think of the number of civil cases instituted against them.

We all know at every level that something is badly, systemically wrong and also that nobody, apart from a handful of lowly scapegoats, has been called to account.

As a teacher I had to call various culprits to account.  I remember one stubborn, little red-haired toughie, who had stolen some money from my purse. I usually kept it locked in my filing cabinet but I had been called out of my office suddenly and hadn’t stopped to turn the key.

I saw the set of her jowl and knew it was pointless to rage or accuse. The evidence was incontrovertible, but she would never back down. Then my anger and frustration lifted. I felt very sad for both of us. I asked her to imagine that she had done it. We would think about it as a purely hypothetical situation and consider the possible outcomes.

I can’t remember the detail, but at one point she protested that if she was able to walk away uncondemned, nobody would know anything bad about her.

“But that’s not true, is it?” I pointed out. “Somebody would know, wouldn’t they? Think about it!”

She thought.  “I would know,” she said at last.

And that was the thing that mattered most. Not the money. Not the punishment. Not her admitting anything. It was her looking honestly at herself and deciding what path she wanted to walk down. Did she want live a life based on feeling clever and pleased with herself for doing somebody else down and getting away with it? It was her choice to make. 

And, this morning, it seemed to me that, at an individual and systemic level, the NHS has reached a similar point.

For a range of reasons, individuals collaborate or collude with bad practice and organisations block or stifle concerns, protests and avoid the investigation of incidents.

Yet I can’t believe that the majority of workers in the system are happy about it. I can’t believe that the majority of managers are workplace psychopaths. I can’t even believe that the majority of elected representatives in the Commons are smugly complacent about it.

So why is it happening? 

I said at the start that you need strength, spirit and commitment to change bad things and it is clear that many within the system are too worn down to do it on their own. There are outstanding pockets of good practice, scattered examples of excellence, honourable individual practitioners, but as a whole the NHS is failing.

We have to help it envisage the way ahead, not just as a financial and organisational spreadsheet, but as a moral choice. Who really wants a shoddy, showy business, lacking integrity, getting away with minimum standards by the skin of its legal teeth?

We on the receiving end have already tried to highlight the need for an honest look at realities, rather than spin.

We’ve tried “consulting” nicely and so far it hasn’t worked.

I fear it is going to take a conviction for corporate manslaughter to strengthen the good guys, inside and outside the system.

In the sixty odd years from post war optimism and good intentions, it has come to this.

It should make us all very sad.

Then we should look at LB’s quilt and commit ourselves anew.
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Alice Meets the NHS Meets Bladerunner

Life’s lesson 6 on Chaos theory

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Grandpa was trapped in hospital, much as Alice got trapped down the rabbit hole. He needed a scan. They kept him in because the scan department was closed by the time we saw a doctor. (We had waited four and a half hours in A&E, this being the only route to get his day surgery checked out).

So there he was, in a hospital bed, fit as a flea, just waiting for a scan.  They put him on a drip, because when he arrived in the ward around ten at night he was dehydrated.  He was dehydrated because he’d been told not to drink when he first got to A&E, just in case he had to go to surgery. As soon as it was clear he wasn’t going to theatre, he started downing pints of water. It had been a very hot day. Made no difference, he was on a drip.

The consultant saw him at eight the next morning. He said he needed a scan. Grandpa phoned me at lunchtime. No scan so far. He phoned at three o’clock – no scan. By this time I realised there would be no scan that day. The department closed at five.

I set out for the hospital. Halfway there Grandpa rang. Could I bring his (extremely common) medication, because the pharmacy in this major London teaching hospital didn’t have it? Answer – no, I’m on the train!

When I reached the ward, I could hear a penetrating noise. Grandpa’s drip kept bleeping. It was driving everybody mad. A nurse had shown him how to switch it off, but every few minutes it still managed some piercing bleeps before he could reach it.

“Why is he on a drip?” I enquired, when she appeared to try and resolve the mystery bleeping.

“He’s dehydrated!” she said. He was drinking a cup of tea. I had read his notes.

“No, he’s not,” I pointed out. “Why’s he on it still?”

“I don’t know,” she said honestly.”I’ll check!”  She returned some minutes later, unplugged him and, much to everybody’s relief, removed the hypersensitive machine.

The next morning Grandpa saw three bright-eyed, bushy-tailed young medics. They poked his neck enthusiastically and said he needed a scan. By the time I arrived at 2 o’clock he was still waiting. I stood around the nurse’s station till somebody noticed me.

“When is he going for this scan?” I asked

“The doctor has to send in a request! Nothing to do with us!”

“Well, so far, three different doctors on three different days have said he needs to be scanned. Can you see from his notes if the request has been made?”

“No, I’ll need to talk to the doctor!”

“Then can you check with him please?” 

“I’ll give him a call. I’ll come and tell you.”

An hour later I started patrolling the corridor by the nurses’ station.

“He’s checking with Xray,” they said.  I continued my sentry duty.

In the end somebody got fed up and said “I’ll page him again. You speak to him yourself!”

Primed by Dr Kate Granger on Twitter, I introduced myself by name (staff nurse had just referred to me as ‘the wife’) and asked “Who am I speaking to?”

A polite young man told me who he was and also that the scan needed a specialist radiographer, who was shared by all five hospitals in the group. He was there that afternoon. He would check on Grandpa’s scan and get back to me.

An hour later Dr Bright-eyed&Bushy-tailed turned up, somewhat shamefaced. He looked just like my grandson. He was very sorry but Mr SpecialistRadiographer couldn’t fit Grandpa in.

“But what I can’t understand,” I explained, “Is why Grandpa’s in hospital in the first place.  If all he needs is a scan, why can’t he just stay at home and come in for his appointment?” Dr B&B looked thoughtful.

“Good point,” he said. “I’ll check!” And off he went to phone somebody senior.

Ten minutes later he came back.  “He can go home!” he said.”Come back to Xray tomorrow at 2 o’clock for a scan!”

That was the Alice in Wonderland experience.

So where does Bladerunner come into it?

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Do you remember the opening scenes in the street market in the city of the future, where everyone milled around and communicated in a kind of pidgin English?  Well, that’s what it’s like in our hospital group.  Since everything’s been reorganised and rationalised we can’t use our local hospitals any more.  They’ve been relegated to basic routine stuff, and have to refer us on for anything more complicated.

So everybody from all the many communities in a sizable chunk of London has to travel to one of these huge hub hospitals, like a massive hub airport.  We hang around, lost and confused, waiting for our slot in theatre, or x ray, or outpatient clinic, or transport, or for medication from pharmacy 

The switchboard is so overloaded it is almost impossible to get through on the phone.  Emails go unanswered, because they all go to one address for every outpatients’ department in the five hospitals and the backlog is unmanageable.  The lift system can’t cope with the sheer number of staff and patients. (When Grandpa arrived for his day surgery, he had to walk up six flights of stairs. None of the lifts were working).

I loved the first scenes in Bladerunner.

I just never expected to live in them!

Learning from #JusticeforLB

Open Letter to Sir Stephen Bubb

Dear Sir Stephen,

Over the past four months, as an outsider to the debate, I have been given the opportunity to listen to the experiences of adults with learning disabilities and their families.

I have learnt much through involvement in two on-going campaigns to achieve accountability in cases where young people in institutional care have died.

Much strong opinion has been expressed by those with learning disabilities, their families and the research community, that institutional care cannot meet their needs.  They argue that they have an equal right to family life under Human Rights legislation. Anything other than that is discriminatory.

With regard to the unsuitability of institutional care, I have noted these key points:

1. Inconsistencies in Care
Many people react badly (challengingly) to any sort of change, which is difficult to avoid in a staffed institutional environment. As a result they are classified as problematic, subject to heavy medication,  restraint and identification as a risk to themselves and others. This leads to long term incarceration in an institution.

2. Disregard for Family Input
When they reach 18, learning disabled people become adults, so it is all too easy for their families’ opinion to be sidelined. Their detailed, in-depth knowledge of the person’s background and needs can be ignored, undervalued or disregarded by paid carers and professional personnel.

3. Quality of Staff and Management
To put it bluntly, sadists, bullies and idlers find working with the vulnerable attractive. This is especially so when their skill set does not enable them to find better remunerated employment elsewhere.
Once trapped in an enclosed institution with no protection from family or friends, people with learning disabilities are at the mercy of such staff.

Even in a less extreme situation, being dependent on disinterested or careless staff makes life hard to bear. It also increases the likelihood that you give up trying to do the things you attempted or enjoyed in a different environment.

(Poorly motivated staff can’t be expected to make life in an institution an enabling or positive experience. Consistently good care demands staff be properly supported, managed, trained and offered a financially rewarding career structure)

The image of a small unit offering intelligent, imaginative approaches to individual care is superficially attractive, but many in the user community do not feel the same way. They want the independence, choice and individual approach that an institution cannot accommodate.

3. Waste of money
Institutional care is expensive.  If the user communities say it does not meet their needs, then the money given over to their care is being wasted or mis-spent on this type of provision. 

My overall impression is that decision and policy making bodies are seen as too limited in their vision of how care for learning disabled adults can be managed, thinking in terms of buildings and professional organisation, rather than flexible approaches to community and family based care.

Highly paid executives are also seen as remote from the realities of the lives of learning disabled adults and their families.

I would like to believe that the gap between these different perspectives is not insurmountable, given good will and honesty on both sides. 

With best wishes

Grannie

Hard Words For Hard Times

Life’s Lessons 4 on Playing the Cards You’re Dealt

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Bubb Blog fury erupted during the heat, thunder and lightning of the hottest days of summer.

The ghastly breakfast business appeared so superficial and insensitive to the poor and powerless on the receiving end, that it provoked an outraged response from those suffering grievously under the existing system.

It was horrendously divisive.  Charities and organisations sitting at the breakfast table were abused. How could they do it?  How could they be so remote from the concerns and experience of the poor bloody infantry?

However the immediate storm is passing and after a cooler break for reflection I’m going to say some hard Grannie things. After that I’ll shut up.

The Bubb Breakfast gang sitting down to coffee and croissants are all we’ve got. They’re not going to be moved on because we tweet and blog in fury. We’ve got to face it, they’re the cards we’ve been dealt. In the unlikely event any protest was sufficient to get somebody replaced, the replacement would probably be worse. That’s the reality of it.

People who are successes in today’s corridors of power have little time for academic research (except when it suits their agenda).
They work on business models, not those of public service. Charities are businesses too.

We have got to understand and acknowledge their mindset in order to achieve change. If our experience and study is going to have any impact at all, we need a strategy that can sell a better approach to the people sitting round that breakfast table and to others like them.

This is quite separate from the ongoing battle to bring those responsible for past and present mistreatment or neglect to account.  That is a long legal process to which everybody supporting JusticeforLB and JusticeforNico is committed.  But let’s not fool ourselves. This will be a matter of years.  It will be blocked, stalled and evaded at every stage.  Every dirty trick in the business will be employed. 

But if we stick to it doggedly, the impact of success (however long it takes) will be profound.  All of us, who know from our own families and friends of the huge deficiencies in care, recognise that until senior persons answer for this through due process of law, unacceptable practices will continue.

We need a two pronged campaign, one part to systematically publicise and promote best practice to the people who have the power to make policy decisions, and the other to continue to pursue those responsible for past malpractice through the courts.

So over to you, folks. 

I’m old and out to grass.