June 3rd 2016 and #EICC meeting is in Whitehall at Department of Health. A meeting so full of energy the National Grid could benefit. Those round the table I hold in such esteem. So much has happened so quickly steered so skillfully by SE. Sad to say she is now retiring. The note I pen goes like this:

Thank you for chairing this amazing group – you have been utterly inspirational. I remember the first time I met you. At the HoC dinner. You fended off negativity from those gathered round with such dignity I have you in mind everytime I encounter a StroppyPerson. The solution… Bat it back. You did. Thus the EICC was formed if you cannot beat ’em join ’em. Our first meeting I blogged something about the scary efficient chairperson.  Since then I am glad to say I am not so scared and certainly enjoy many giggles. Thank you awesome lady. Very best wishes for whatsoever you are about to do next. Never say goodbye, it is always…see you soon. 

What did I write….?only a year ago….March 2015

Sequins and Tiaras

LK Bennetts or …..EXCELLENCE IN CONTINENCE CARE PROGRAMME BOARD

Here we are 6 years after this Odessy in Uro- world started and I find myself sitting round the inaugural board table of NHS England Excellence in Continence Care programme. I really only ever wanted to teach maths, accounting and deal with bad boys. Now look where I’ve drifted to. Dammit. Get on track J.

This was born of a chance encounter in the bowels ( a deliberate use of the word) of the House of Commons.

Chance? Well, an organised lobby of Lords Ladies MPs and NHS England by eminent surgeons, nurses and economic strategists. Orchestrated dinner and speeches from patients ( 2 of us) then discussion around the table.
My hastily written speech then, was based on the BC AC idea. I had just submitted a presentation for Cambridge later that week. Before Cambridge After Cambridge was my spiel. …But that’s another story!

So all I could think of to say was BEFORE Catheters and AFTER Catheters. To get the BC AC bit in for continence.

Then,come the Cambridge presentation I was so panic struck I’d say ‘ catheters’ I introduced my top trumps idea (St Pancras Champagne Bar loyalty card).  Not least because after the dinner at HoC where we had all behaved so well, we then gatecrashed the ‘Cross Party Beer Lobby’ group meeting and all staggered out clutching takeaway bags filled with all things brew like! 
But, I digress, sorry…

T ( Tiara) my fellow patient advocate has a different story. A lifelong bowel and bladder problem. So ‘ two for the price of one’ as she calls it.
So here we were, March 2015, at the meeting  of NHS England EICC. WHOOOO..  I could not make it funny. But my notes are below. Well, OK a few funny bits.

Chair lady dammed scarily efficient and good and restoring order as
board members’ voiced their passionate pleas for action on their particular areas. I reckon John Bercow should watch out … A secret Tory might put SE in his place!! Come the May election this could all be centred in Scotland with Bercow in the Tower? I jest not.

So some intros…
Geriatrician brilliant all 4 foot 10 of her.Nurse specialist lovely not sure name  we / I decided next meeting should be in her home town. Truro. So surf sun sip a healthy SSS acronym option for NHS long jargon list.  Expert in the Archers which she said helped her understand the ‘ sheep in the country’??!! Thank goodness I remembered David and Ruth are not leaving Ambridge after all. I think my status rose after that. Perhaps ‘ I’m only-a-patient-with -rudimentary -Archers -knowledge better than nothing’? 

Children the country over must rest assured the passionate championing of their cause by specialist nurses was awesome. They are ferocious …. Watch out SE! They are the bull terriers.

Patients 18-70 hang on in there. Tiara and I will do our level best. It could be so simple. Quality of products, Quantity,  Assessment. Dignity. Self referral/ control of own destiny…. Post code lottery. ( why ever did we live in Bedfordshire?!) communcationn n nnnnn mmmm between specialists? Nah. Why bother. And NEVER email a patient or return a call. Tsk. Don’t you know how many emails we get mmmmm ssshhh J that’s not entirely fair. Youareonlythepatient

The mind boggling NHS structure
CCG  BCG  QUIF QUAFF NICE SEQUINS ERIC ? WTF ?

SEQUINS? who on earth are they?  Then there’s public Health England AND Department of Health. And I thought Education was top heavy. This is madness.

 Now what about dear  Professor Dame CMO?  Where does she fit in? No one  entirely sure. Or did I ask the wrong question? (Mmmm maybe I’ll discretely ask cmo myself.) shhhhhhhhh..J remember…..Youareonlythepatient
Lady with the LK Bennetts getting going. Shewas putting her trainers on. Dashing to climb the gherkin? Do a marathon?

We were split into working parties

Objective = guideline By October 2015 for April CCG 2016 budget
Keywords to learn
Levers incentives 
 Evidence based care pathway 
Effective assessment 
Patient and Public Information ( self referral?) 
Alignment of Contract levers /incentives. 
 Workforce competency 
Vanguard CCG?   Eek Understand QUIF. QUAF. LOL. SEQUIN ? CHIMAT? 

Postscript…..November 2015…we actually did it:CLICK

XLNT !