#LEEDSLIVE CONFERENCE 
I’m honoured to be here today. And grateful for the opportunity to raise awareness about a subject that has certainly changed my life. Although I am bewildered to find myself here at all…I still don’t quite believe it myself.

At the end of my talk we should have time for an interactive quiz. So just while I set that up could you ask the person you are sitting next to:

Two questions: Have you ever used a catheter?

What do you see as the barrier to teaching CISC techniques /
BC AC
Photo of family party..

BC Before Catheters

I was just like anyone else. Taking being continent for granted. I was an accountant and bit of a break to bring up our children and our amazing eldest son too. He’d been orphaned at the age of 7, AIDS / HIV was the nightmare our famil  found himself in. But that’s all another story and I’m so bursting with pride  so tough times all round. But as they grew up I became in 2004 a full time secondary school teacher of maths , mother of 4, wife, daughter , sister etc ….about to taking up new senior leadership role and I had never had a day off. …Odd headache!
I thought that the very idea of continence was for those in wheelchairs and the very old. I remember MY OWN very thoughts with my grandma.  With little or no thought to how..she felt….it just seemed
Humiliating …..for me!

Smelly…..for me!

And downright uncomfortable it was..for me !

…   The mere sight of a urine bag in any hospital made me feel queasy.

but what must it have been like for HER? well now I am closer to finding out…
But now for AC…life After Catheters

Fate dealt its hand. Starting the battle-the-poor-receptionist game..( photo slide of hassled surgery receptionist)

It all started in 2009, a planned hysterectomy where I was so worried about taking off the six weeks out of work. How naive I was.  After 6 weeks the surgeon duly declared I should be fit for work..What is it about that magic six weeks?  I tried to get back to work feeling horrendous but not knowing why….After months of indecision and misdiagnosis ended up having emergency surgery to relieve an obstructed ureter. after two failed re-implantations of bladder to remaining ureter. Many stents. Continuous indwelling catheters, and nephrostomies led to near continuous uti s and inevitably sepsis.  I called a halt when it was suggested I could lose my kidney or undergo yet more surgery to move all the right side of me to all the left.  That was an easy decision made even easier when I decided to donated my kidney altruistically.  That part of the story is a great one. I have great pleasure in swapping letters with the dying man who received my kidney.

I meanwhile was in hospital so much I reckon got the ‘ frequent flyer’ awards …

OPS after all those operations ( photos of surgery and nephrostomy)
Depressing urodynamics proved what I already knew….bladder just was not emptying. In fact I could not even feel it.  Empty when full the surgeon and nurse asked… NO chance… er tip you up tip you down sit you up sit your down…NONONONO…they were utterly lovely but oh how utterly horrible it was.
Sunglasses to hide the tears I staggered home. Clutching a Handbag of catheters promptly dropping them on the train….  and later I took delivery of those discrete regular plain parcels delivered to my door. Thank you to continence fund.
No idea how that works but it does.

So began life AC … HATE USING CATHETERS in school ,in planes, trains. Disposal bags like my dog bags. Antibacterial wipes size of stamp. Sainsburys Tesco’s … ‘ baby ‘ wipes or toddler wipes.
I have had them confiscated by customs. I have had them leak all over my picnic and they have a life of their own as you judder over signals on a train.

I then had to undergo …Further surgery because of the number of utis and sepsis had affected the discs in my back.

Research shows this can happen!…so I had to undergo a spinal fusion to jam the vertebrae together.
Inevitably some loss of bowel function.

2013 Mr Medtronic plus two urological surgeons fitted SNS … Cynical me pondered how on earth this sort of tens machine make my bladder work? Unbelievably it did — mostly. Still using catheters but less and despite issues with continence managing a whole lot better. But way way better than the misery times of earlier.

Now I manage my continence and numerous UTIs that go hand in hand with my condition mostly well. Life isn’t simple. Even short trips have to be meticulously planned.

• Impact on my quality of life,
• ability to work ( job reduced to 10% as I am just so unreliable) i
• the impact on my physical mental and economic wellbeing is huge and of course affects my family.

Research As teachers we are urged to become more evidence based. http://www.cochrane.org/.  We are urged to emulate your use of Cochrane  review. Indeed some of us are trying to set up something similar. My daughter is a Physio at UCLH.  Her journal club is one we are going to copy too……evidence are given the medical profession as an example of excellence to follow. So with my research hat on I ponder…. How does a patient male female young old actually cope with all this? What does it feel like?

What are the …….

Social stigmas and taboos?

Continence services across the postcodes?

I am not even sure I know a clear definition of ‘ continence ‘

So I delve further…Research…into Antibiotics. Antibiotic Campaign. Research into continence, catheters, indwelling and other…  We’ve had the Francis report 2009 2010. The National Audit of Continence Care 2010, Nutrition and Dignity Inspection 2011

Let me tell you a story…

Story about Masterchef: 

Some 30 years ago I met my dearly belov’d! …We got married. Great. Our first row? That was over an onion.  He’d offered to help me with supper but looked incredulous when I asked him to chop an onion….Never had cooked let alone chopped…argh.

Fast forward 30 years …yep still married! …and the the last six weeks…( aha that magic 6 again!) our evenings…have been taken up with ‘Masterchef’. His choice not mine.

Daniel must have watched every episode of that programme since it ever started.  He knows his roux from his béchamel, his sous vide from his quenelle.  He has taken the last six weeks indeed six years to identify his area of interest, he’s researched it, he’s looked at the relevant characteristics John or Gregg? He’s good he’s an ‘expert’ he could in fact judge it. He can convert to answerable questions. He has found the best evidence. He has appraised that evidence and indeed he has evaluated the performance. BUT!!!

But can he cook? Dammit not one dam thing has he cooked in 30 years! So my point is…

Unless we use our research or our enquiry what’s the point?  GP surgery  is fantastic but really don’t know what I need or how to provide it. But I understand the research has been done out there. There is absolutely no point in gathering all this data and saying we are evidence based when we are not using that evidence.

Research:

• To convert our information needs into answerable questions (i.e. to formulate the problem).

• To track down, with maximum efficiency, the best evidence with which to answer these questions – which may come from the clinical examination, the diagnostic laboratory, the published literature or other sources.

• To appraise the evidence critically (i.e. weigh it up) to assess its validity (closeness to the truth) and usefulness (clinical applicability).

• To implement the results of this appraisal in our clinical practice.

• To evaluate our performance.

Findings of the Francis report: loss of dignity and the impact of this on them and their families is almost unimaginable.

‘life sentence of bladder and bowel incontinence’  National Audit

‘ time and time again patients were treated by staff in a way that stripped them of their dignity and respect.  Basics of life eat drink or go to the toilet…   Nutrition and Dignity Programme.

 Here’s a story and one which  will be mirrored in all your hospitals every day…
I started a blog private and not shared with many people a few years ago as I languished in hospital….

This is a more recent entry.

March 2015

I am female a maths teacher mother of four and wife of one ! I am 54.

Does that conjure up an image of continence or should it be incontinence to you?

I might look ‘ normal ‘

it’s important that you know there’s a few broken bits inside.

That’s a rush to a disabled loo if I dare run the gauntlet of accusing stares (aka recent Twitter feeds)

There’s the postage stamp wipes the baby or bitty  botty tesco value wipe…or any other demeaning word

Oh I met my Labour candidate today. He was canvassing doorsteps. This was before last week! Aha I said can you help me I’m a bit confused about the stance you take on Health. In particular ‘ continence’… His blank look told it all. Had no idea what I was talking about. After some prompting by his co-canvasser who I recognised as a lovely nurse from my own GP practice. Oh yes he said the ‘nappies’ NHS supplies to adults. No no that is so not what I expected. Ignorance. Awareness. Help.

But then I see my local CCG is £40m yes £40m over budget. Oh deary me. Outsourcing. ? Profiteering? Er I better find out more. The Postcode lottery begins to make sense

The catheter CISC equipment ….and there you were thinking ISC is the government Intelligence and Security Community.

Self test your urine they tell you. Self management such a trend. But oooooh

Dipsticks pots are £50 no prescription

Syringes and needles ? Oh yes for the bladder instillations pay for those too.

The doctors who tell you : oh that’s a common problem for ladies of a certain age’ is it? REALLY?! Well I never …What are you going to do about it. What have you done about it?

Ladies: Have you ever tried to pee standing up? Watched by two male strangers? No this is not some sequel to fifty shades of grey… This is fifty shades of indignity otherwise known as URODYNAMICS. Little or no prior knowledge makes this shock tactic a torture beyond description…Imagine it .picture it. what would YOU do?
As for Indwelling catheters now don’t get me started …. as Melanie Reid explains ….http://www.healthtalk.org/files/nursing_times_living-with-an-indwelling-urinary-catheter.pdf
Or Since the introduction of the Foley catheter in 1937, its design has not really changed.

People want a new design that would reduce complications,

promote independence and be more discreet.

Users who lacked dexterity hope a new design would allow them to empty the drainage bag themselves, and a few wanted a device they could change themselves. Some felt strongly about

“having a bag of urine strapped to the leg” and want a more discreet catheter

or one that stored urine inside the body. Others stress the importance of a catheter that helped cut the risk of UTIs,

blockages and leaking, and did not cause

trauma around the catheter site

Journalist Melanie Reid,
who was fitted with a permanent catheter after a spinal injury, called it “healthcare’s hidden scandal of neglect” as the design of indwelling catheters has not changed since 1937 despite catheters accounting for more healthcare-associated infections than any other medical device (Reid, 2011)

Wedding photo…My mother in hospital
Last year I was unfortunate to nurse my mother thru cancer. Everywhere fundraising for Cancer there is no embarrassment about Breast cancers etc .  I have to say as a child I think the thought of using the word BREAST would have filled me with horror! and certainly not a word to be used with my MOTHER!..so we have actually made great progress there.  Indeed the whole area deserves that, but the comparisons are stark. Her worst fear was that she’d have catheter not that she’d lose a breast.

Attitudes – battle with CCG to be treated out of area. Have not got the energy to start battle on better continence products
I think probably a lot affected. Silent and not just poor old folk in care homes.

What do I want you to do with all this information ? Well I just would like you to imagine yourself in my place. To treat me as you would any patient. A personalised individualised approach and please let me pop to the disable loo – maybe there’s a reason. Try please to understand what it’s like being ( broken) me. We are not all the same. BladderBowel conditions cover a plethora of issues. Please don’t define me by my issues. Please know me for who I am and what I love but not my ‘label’

after all I am still a wife mother daughter friend just a broken one…

now for a bit of a VOTE if we have time,  please log onto NEARPOD on your browser. 
Type in this pin number and wait when prompted type in your name…

Two questions: Have you ever used a catheter? 

What do you see as the barrier to teaching CISC techniques /

If time blog entry: ‘It was all going so well…’

References:
Care Quality Commission Nutrition and Dignity Inspection Programme 2011

Cochrane http://www.cochrane.org/evidence

Francis R (2005) Independent Inquiry into care provided by Mid Staffordshire NHS Foundation Trust January 2005 – March 2009 2010

T Greenhalgh (2003) How to read a paper evidence based medicine. – Serviço de neurologiahu.ufsc.br

How-to-Read-a-Paper_Evidence-Based-Medicin

Royal College of Physicians The National Audit of Continence 2010

Other references

https://healthunlocked.com/amneasier/posts/308938/continence-some-thoughts-part-2 How-to-Read-a-Paper_Evidence-Based-Medicin