Tuesday, 16 July 2013

Can't follow a knitting pattern? Ban jumpers!

The demise of the Liverpool Care Pathway following the Daily Hate Mail campaign to stop people dying with dignity is deeply saddening. This is this morning's email from Roy Lilley, an NHS commentator who I follow closely:

I wrote this last year:

The cobalt sky sieved the rain and drifted it gently into the quadrangle. A stick thin girl, dressed in black, sat on a bench; legs crossed, her head buried in her hands, deep in conversation on her iPhone. As she looked up, her black hair parted.

Mascara ran down her ashen face. She mouthed 'Sorry' and was gone.

This secluded square, landscaped by Adam Reynolds , is next to the medical wards and is where people come to whisper news to anxious friends and family. It is the only place where a mobile phone works.

I had my own bad news. The consultant caring for Uncle Les had taken me and my small family, day by day through the complex, chronological record of his stay. He showed us test results, changes in drugs, therapies and medication. Les's frail body was the battle ground where they'd fought a Hydra. Liver, heart and kidney function, platelets, tiny levels of this and that measured and brought into sharp focus by the incredible technology of modern pathology.

Should we follow the Liverpool Care Pathway to a more peaceful place? What else could we do? Les was exhausted and we were shattered. The Consultant and his team were at their wits end. They had depleted their armoury and pushed their knowledge to the absolute edge of understanding. 

I stood in the rain and made the call to the one relative who couldn't be at Les's bedside. We all agreed. It was our unhurried, independent, decision based on an exquisite explanation of the facts in plain language.

We let him go to his maker with our love. The Chaplain helped him on his way.

I told the wonderful staff that it was important to our family that Les's epitaph should be their heroic attempts to give him back to us. Les was our loss but their success.  They should be proud of what they do. #fabulousfrimleypark is a special place.

What would we have done without the Liverpool Care Pathway?  My Uncle has a special place in my heart.  He was a big influence in my life.  I hesitate to say this but; if he had to go, I'm pleased he went when he did.  For no good reasons obvious to me The Neuberger Review is abolishing the Liverpool Care Pathway.  Waving two fingers at the Mare Curie Palliative Care Institute

Neuberger's happy-band found; "....  it was not the pathway itself but poor training and sometimes a lack of compassion on the part of nursing staff that was to blame... junior doctors were expected to make life-and-death decisions beyond their competence after hours and weekends."

So, do they recommend training in the Pathway, do they recommend trying to find out why nurses suffer compassion fatigue, do they advise we look at senior staff rostering?  No.  They dumped the Pathway.

Now we have more upheaval.  'End-of-life-care-plans' will be the new boxes to tick, along with 44 recommendations.

Who made the decision?  Two Lords, one Rabbi, a professor, a self-confessed 'amateur health policy nerd', a King's Fund person, a Times columnist and someone who described the LCP as "legalised euthanasia".  Thank you.  

The Report is 63 pages and contains no annex of submissions, evidence, testimony, witness statements, analysis or proof.  Just the opinion of the great-eight who have gate-crashed the lives of people when they are at their most vulnerable.

It seems the great-eight have not the wit nor wisdom to think of raising the standards of the worst to the average and the average to the best.  NICE will now write the LCP again.  Because idiots ignore traffic signs we don't tear down the signs.  Because people can't follow a knitting pattern we don't ban jumpers.

In the days before the LCP I stood at the bedside as the dawn painted a cold, grey watercolour wash of day onto the curtain-less windows.  All day and all night I had counted the syncopated breaths as my frail Father, exhausted by his struggle, let-go his hold on life.  Each rise and fall of his chest accompanied by the haunting sound of guardsmen marching on gravel.  A countdown to the end.

I wished then and do now; he had lived long enough to have had a better death on the way to Liverpool.

No comments: