On 31 Mar 2015, at 10:54, Jacq <jemkes@gmail.com> wrote:

Sequins and Tiaras 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. 

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

Chance? Well an orchestrated lobby of MPs and NHS England by clinicians, patients and producers. 

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). Arghhhh I digress sorry…

Tara ( 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 are at the meeting NHS England. WHOOOO..  I cannot make it funny. But my notes are below. Well ok a few funny bits.

 Chair lady dammed efficient and good and restoring order as board members passionate pleas for action on their particular areas. I reckon John Bercow should watch out … the secret Tory might put Sarah 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. Also nurse specialist lovely not sure name  we  I decided next meeting should be in her home town. Truro. So surf sun sip a healthy option for NHS. Expert in the Archers which Geriatrician says helps 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 Sarah! 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?!)

The mind boggling NHS structure 

CCG BCG QUIF QUAFF NICE SEQUINS ERIC ? WTF ? 

SEQUINS! I now know all about. Whopp. Didn’t teach us that at ICAEW!! Id like an economist’s take on that. 

Then there’s public Health England AND Department of Health. And I thought Education was top heavy. This is madness. 

Now what about dear Dame Professor Sally?  Where does she fit in? They weren’t entirely sure. Tho I had the temerity to point out her name is Davies not some other acronym they had invented.  The looked down their bespectacled noses at me? A patient? Speaking? Eeek I must remember I’m only a patient even here what the hell  do I know? (Mmmm maybe I’ll discretelyask Sally myself.)

My notes: 

see membership list need more Men, GPs, Physios all 

Chair : Sarah Elliot Chief Nurse NHS England scarey but nice 

Absentees. Many clinicians – difficulty in being able to attend. Most have emailed suggestions. eg Paul Abrams Richard Fluck. ( could use his dialysis mapping tool)for this? 

Introductions. 

Many award winning individuals here. 

Sarah explains that at our dinner in December at House of Commons was struck by patients stories. introduced JE  and suggestboard  to read a bit of the story. On website. Eeek . Says was moving story. Help what did I say? The blog is only half of it.

Terms of Reference etc 

Proposed ‘webinar’ type meeting arrangements. 

Etc see minutes

Overview

Paediatrics to Geriatrics. One doctor one patient. 

BUT…..

. But 18- 70 = many doctors ! 

What are we trying to do that hasn’t been done before? 

Many reports, data, etc. But what has happened? Francis reprt. Mid Staffs. 

Norman Lamb. 

Hard truths Compassion in practice. 

John Young long term conditions

Frailty 

Parity of esteem mental health physical health 

Politically: all parties signed up to 5 year forward view. 

Lack of dignity. 

‘ House of care‘ JE:may I say?? like in education.

 Spiral better. ? Communication. Collaboration.

( mmmmm not sure Sarah liked that! ) 

Oops remember Jacqueline.Emkes you are only a patientYouareonlythepatient

Actions

Split into working parties JE with Tara /Robert /paeds 

By October 2015 for April CCG 2016 budget MANDATORY

Levers incentives 

Evidence based care pathway 

Effective assessment 

Patient and Public Information ( self referral?) 

Alignment of Contract levers /incentives. 

Workforce competency 

( JE : What about capacity? Overstretched already??!!) agreed but says will be better from NHS AS LONG TERM gain is reduction in avoidable admissions etc. 

NEXT MEETING DATES ETC 

Jacq homework:(!) read up research findings. AskDaron?  Nikesh? 

CCG understand how this works. 

Vanguard CCG? 

Understand QUIF. QUAF. SEQUIN ? CHIMAT? 

Dad – would you be better off with a geriatrician to co ordinate the whole dam thing. ? How do we get round MK CCG? I’ll try and work it out. 

J 

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JE iPad