Alice Meets the NHS Meets Bladerunner

Life’s lesson 6 on Chaos theory

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?

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!

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All Human Life Is There

Life’s lessons 5  On patience being a much required virtue

I had planned a nice relaxing week, but best laid plans and all that.

On Monday lunchtime,  when I came back from a nice TKMaxx dressing up session, I was greeted by Grandpa who had had minor day surgery a week ago. He thought it needed checking out. His neck looked a bit odd.

Off we set. We couldn’t go to our nearest local hospital, because their ENT had been moved to another hospital in the group. It was the furthest from us on the other side of a long traffic jam. (In London the moment the schools close for summer, a rash of major traffic works start.)

We went directly to the department where he was treated, but they said we had to go through A&E. This was at the other end of the large, confusing complex with no maps displayed to find your way. Various people helped.

When we got there it didn’t look too bad. Only one person was groaning in pain, while her friend patted her back with one hand and texted with the other. It was one of the hottest days of the year. There was a notice on the board apologising for the fact that the heating wasn’t working.

I couldn’t concentrate on reading to pass the time, but I didn’t need to. The girl next to me was on her phone. Her boyfriend was cheating on her. She had found out by going through his phone and had rung the number he had just been speaking to secretly in the kitchen. She said she had been very polite to the girl who answered, though I didn’t entirely believe her on this.

Her friend thought going through his phone was ethically questionable. I was with the friend on this. It was a bit sneaky. But she said the fact he was cheating exonerated her. I felt her reasoning was rather weak on this point. Anyway, he hadn’t been best pleased.  Perhaps that was why she’d ended up in A&E.

This saga got us through to the Triage nurse.

The next stage was waiting to see the doctor in another small seating area. The Chinese lady next to me was holding a sick bowl and a towel, but when her teenage son came in with some snacks and sandwiches, she cheered up and tucked in. There was a picnic atmosphere. He had to sit on the floor, next to the ten year old girl who was in with her mum and her mum’s friend. She had a tale to tell.

Her mum had a head wound. Every so often a passing member of staff would poke her and say “Don’t go to sleep darling!” It all had something to do with a fight. Ten year old was cheerfully recounting a blow by blow account of the altercation to Mum’s friend, covering what had led up to it and what the police had done. She also offered a detailed critique of the various social workers involved.

She appeared to have a confident familiarity with A&E. She helpfully showed me how to operate the water cooler. She could also negotiate the staff only route to the vending machine to which she made regular visits. 

Just when we had covered most aspects of the incident, further entertainment appeared in the form of two policemen and their handcuffed prisoner.  There was some discussion with hospital staff regarding his name, as the one given didn’t match their recent acquaintance with him. It was all very cordial. Everybody appeared to know each other.

Then a surprisingly cheery man with kidney stones turned up. The staff greeted him by name “Hello, Frank! You back again!” He told us all how he just popped in whenever he felt a new stone required attention. His local hospital couldn’t deal with that speciality any more, so he usually made a day of it.

Eventually at five minutes to eight we saw the ENT duty doctor. Grandpa was her last patient. Her shift finished at eight. It was five past nine before she managed to get away. She had to hunt down items of equipment she needed from distant departments and track down his notes. Everything was locked up and closed by this time.

I couldn’t help thinking how good natured everybody was considering the inconvenience of their workplace. The guy doing Grandpa’s blood test had to find him something to sit on and lay out his equipment on a plastic sheet on the floor.

And Grandpa? He’s still hanging around waiting for that scan 24 hours later. At least he’s healthy, apart from his odd looking op scar.

You need to tough to survive in hospital these days, as patient or staff!

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

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.

“God Bless Us, Every One!”

Life’s lesson 4 on What doesn’t change and what might

As a child I had to learn large chunks of the King James Bible off by heart. It was quite common in the Scotland of that day. As a result I still carry the echo of these around in my head.

One day I was on a train going to some conference or other on change in the public sector.  As I half-heartedly scanned the conference papers, all of a sudden one of those echoes slipped into my mind.

“The poor you have with you always.”

I had always felt this was a rather ungracious comment for the saviour of mankind, but all of a sudden it fell into place.  Not just the poor, but the learning disabled, the sick, the neglected, the old and the despised.  All the vulnerable populations in any society. Every generation and community has to choose how they treat their weakest members.

That’s something that doesn’t change.

Another echo I carry around in my head is of the literature I had to read at school.  A lot of it is just too long nowadays, but before digital technology and wall to wall entertainment, there was more time to fill.  Now I’ve gone back to the great Victorian writers in audiobooks.  They’re particularly clearsighted and scathing on the dark side of politics, business and charity.

That’s another thing that doesn’t change.

So why are we so surprised and hurt that we still have to fight the  injustices in our own society?

I suspect it’s that we swallowed our own post World War 2 publicity. We thought things were changing.  People were better off, healthcare was much improved and more accessible, secondary education was universal.  We all had more stuff.

We overlooked the dark side.  The increasing power of the state, the surveillance and intervention of officialdom in aspects of life that had previously been a matter of personal choice.

No wonder so many of us feel guilty and unhappy about aspects of our work. We’re the Bob Cratchits of today, sitting shivering at the modern equivalent of the clerk’s desk , at the mercy of a corporate Scrooge. And our Scrooge isn’t going to be visited by the three ghosts of Christmas. Our Scrooge is hanging on to his money and looking to make more.  Tiny Tim is going to his grave.

But I sense we’ve reached a tipping point. Too many articulate, educated, stroppy people are now affected. Government, local and national, might get away with fobbing off the poor with crappy services. Hampered by lack of education and resources, they’re too disadvantaged to put up much of an organised fight.

It’s organisation and persistence and ingenuity that is dangerous to the corporate Scrooge. It’s the sustained guerilla campaign that undermines, as it increasingly gathers support from a disgruntled, disparaged citizenry. 

That might just tip the point in the right direction.

That might just make a change.