May 2015 well a surreal 24 hours continued

One minute I’m coordinating a team of secondary teachers needing programming skills for new curriculum in Bedford ..next I’m in Battersea meeting Lou and George. Before dinner in a smart hotel.
Guest of Coloplast I have a sumptuous room slept like a log feeling better than I have for a few weeks now.
Guest speaker for urology live event. Nurses physios from hospitals across South East.
Only had to speak for 30 minutes on ‘ my story’ I’ll add the speech. But suffice to say I cannot make it sad or serious. Is that called denial?

In other news: NHS England phone conferences…so much better than meetings latest is we go for late October with mandatory guidelines to CCG. Using the Its Personal Campaign aims… my efforts at patient empowerment:

Here are the Its Personal GOALS. I want NHS to change continence to bladder and bowel. I think its about the accessibility of the language….

1. Everyone with a bladder and bowel problem should be listened to and should have access to the right care, treatment and support for them. 
2. To make our goal a reality, people with a bladder and bowel problem:Be offered high quality information about their condition and treatment and care
3. Be fully involved in decision about their treatment and care and be treated with dignity and respect
4. Have access to interventions that have been recommended by national guidance
5. Be offered a full assessment by an appropriately trained professional and a personalised care plan which is reviewed at regular intervals

House of Commons watch out…16th July.

 

 

And the rest of the news … D has job interview. He seems stressy about this one we are trying to jolly it along. Eek. Fingers crossed. I think?! Would mean no commuting. Kids laughing..’aha that’ll cramp your style mum! No home alones for you’..whooops. !!

Parents holding their own. My Dad convinced he has kidney stones now. Not sure that he does but clearly something not ok. Prostate? UTI? I said I would ring GP. He says he will. ok ok. Sent him rude cartoon to distract. Apparently it did not get to his ipad til 4.30 am oops. But he was just worried I was awake at that time. Dear ole Dad.

Mum frantic on the bridge and book club circuit…’breastless’! she’s on a stoic bucket list or bust…no pun intended…. Phew…

Young D planning wedding and we have sorted the food and wine..that’s brill. H seeing new MH team …hopefully good. George Lou happily London, Shoreditch and UCH respectively. Pop home for a swim in the lake when they can.

Have I mentioned the swimming? Well G and I started last year when he with knee and me with spine needed a bit of rehab. My running days are really over.  So as I told the coloplast delegates open water swimming highly recommended. Farmer has filled in his fields. Open for wakeboarding and swim sessions nightly. Whoo. Wet suit so tight it’s a work out in itself to squeeze on. Then the compression effect holds all the painful leg back and pelvis in one place. The water so dam cold its like an ice bath anaesthetic. Oh and no worries about that incontinent pee issue. In fact its quite warming and out in the open so as nature intended. Its actually wonderful relaxing and just so addictive. Took MJ, netball champ that she is feels she needs to be fitter. Its brill having a brave buddy. Kids like it too they seem happy to come out with the old duck. Talking ducks there are a few that land there!

Oh and what was my speech at Coloplast?…..here goes ignore it …I just sort of blah on…

Page 1 of 10 Talk at Coloplast MAY 2015 Jacqueline Emkes Patient Advocate

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.

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 nephew  too. But as they grew up, my husband closed his business and stayed home for a bit and 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. … 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… I hate to admit it I was needle phobic too. The mere whiff of antiseptic and I was flat on the floor.

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 ugh)

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

(AC = After  Catheters)…Can I just say? I  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.  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 too.

 Research

As teachers we are urged to become more evidence based. We 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! …Uhoh..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. Patient Advocate 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 tortuously 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_livingwith-an-indwelling-urinary-catheter.pdf Or Since the introduction of the Foley catheter in 1937, its design has not really changed.

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.  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…