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Roy Lilley
Has it ever happened to you?

Once in a life time you will meet someone who says something that makes you think. It might be a big political speech or it could be a poet, polemicist, essayist... the books of quotations are full of them.

To sit opposite someone and listen to them say something that gives you a goose bump is something else.

In the flickering candle light of an Italian restaurant ... 'I love you'. Across the table in a supermarket coffee-shop... 'I've decided to leave you'. In an a office meeting room... 'you're fired'.

I never expected to be rocked back on my heels by someone old enough to be my granddaughter. I never thought I'd be made to recalibrate my whole view of the NHS by a complete stranger.

A confident young woman. A nurse. A fellow traveller in the pursuit of excellence, with a Master's in the most complex of fields. As far as I know someone unique in her skills. Of the 1.3m hard working souls in the NHS, she is the only one I know of, doing what she does.

Alison Dean works with colleagues, in a huge hospital, to support the delivery of safe and equitable healthcare for children and young people with learning disabilities. Sounds easy? Niche?

Learning disabilities encompass a spectrum and can mean a complex range of genetic syndromes and birth acquired disabilities that can culminate in people with the most complex needs it is possible to imagine. An excruciating range of challenges.

Communication, emotional trigger points, contra-indications, moving, lifting, turning, diet, preferences, foibles. No two patients the same.

Psychological, clinical, physical; unbelievably difficult. But, beneath it all; warm tender and loving people with all the needs that you and I have.

Recognising, translating and making their needs part of a care plan is so difficult. Parents who understand every gesture, every change of mood, every movement of their child translates into a need, a communication, a mood, a want or expression of something, anything we take for granted.

How do you plan services. How do you cope with dentistry, the flu, ENT routine or accident and illness.

I sat in a well used, staff hand-over room. There must be hundreds like them, up and down the NHS, and I asked Alison the question, the answer to which was to change my whole outlook. Little did I I know, a few days before Easter, this was to be my Damascus moment.

'How do you plan for the complex needs of these children?'

The answer...

'I ask the family...'

Think about that. 'I ask the family...'

For years I've been signed up to the 'patient choice thing'. I've tried to do the 'ask the patient thing' but in my 'Alison Moment' I was struggling to understand how complex needs are planned and coped with. How you can really know what a child or young person, with the utmost difficulties in communicating, wants and needs, expects and understands... I realised, it's simple... you ask.

Just ask.

The woman in bed twelve isn't the woman with the hip and the man in the second bay isn't the man with the hernia. The lady in the side-room isn't the woman waiting to go home. They are people.

They are mothers, fathers, grandads, neighbours and people like you and me and if we asked them what they want, what their expectations were, what their preferences and problems are... we would do a lot better.

Service planning, care path makers, commissioners... just ask.

A real and relentless focus on the patient. Not lip-service, not in-name; really ask. Angela has to go to extraordinary lengths to find out. She uses graphics, pictures, storyboards, patient passports full of insights and preferences. It is a huge effort but it makes for a service second to none.

Where is this? Barking, Havering and Redbridge NHS Trust. The place is oozing excellence, ideas and innovation. Bowel cancer screening with exceptional results. Paediatric recovery in theatres... full of new ideas and frail elderly services that must be some the best I've seen.

How do they do it? They just ask. It's not rocket science. Going from good to better and better to best is a whole lot easier when we don't pretend we know and we learn to ask.

BHR are just out of special measures... but they will always be special.

Happy Easter.
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