Dunedin hospital/ACC "poor me" gripe.

Background
A few months ago I got referred to the urology department at Dunedin hospital, NZ because I was retaining fluid. A cystoscopy (which caused a scary infection) revealed it was caused by scar tissue from previous TURP operations. It would be fair to say that New Zealand's public health system is not in good shape, it has not received sufficient funding. (The Political Party that has been in for nearly a decade before the current party favoured private health options.) Dunedin hospital's Urology department seems to have gained a reputation for its waiting lists of patients. In New Zealand we have the "Accident Compensation Corporation" which administers the country's no-fault accidental injury scheme. The scheme provides financial compensation and support to citizens, residents, and temporary visitors who have suffered personal injury. The specialist who checked the cystoscopy suggested that since it was scar tissue, ACC might fund the needed operation, so that maybe I would get the operation earlier. An application was lodged. I am waiting for the result of that while a catheter is in place. I had another four day spell in hospital recently with an infection - it happens while wearing a catheter. The ACC wrote to me recently asking if I would sign a form to allow them to have more time to make a decision. If I did not sign the form they would make a decision on the information that they had. I agreed, thinking that I am more likely to get a positive result if they had the time they need. But I am pretty desperate, I HATE having a catheter in place.
Reaching out in frustration!
In frustration, I wrote an open letter to ACC which went in with the return form, with a copy to the Dunedin Hospital Urology department.
Here is what I wrote...

An open note to those involved in ACC and to the Urology Dept. Dunedin Hospital.

My NHI number (XXXXX.)   ACC claim number (XXXXXX)

Dear people,

I am signing the form from ACC agreeing to more time being taken to assess my case for surgery. However, I do want to make a plea for as much speed as possible in making the decision.  I am waiting for surgery, wearing a catheter with a whole heap of consequences for life. I am used to waiting.  Since 2012 I have spent a lot of time waiting.

·      I waited almost a year with a catheter prior to my unsuccessful surgery in March 2013.

·      I waited almost another year while self-catheterising before I had successful surgery in Invercargill late February 2014.

·      In 2017 I waited for 8 months of uncertainty for a biopsy after a digital examination.

I was referred to Urology after a back injury and an ED doctor noted that I was retaining fluid late February 2018. I have had appointments with continence nurses and the Urology nurse, but apart from the cystoscopy, which involved the briefest communication of the results and need for surgery, I have not had a “real consultation/conversation” with a urologist. (Except helpful conversations with the Wellington team after I was admitted there via the ED because of a klebsiella pneumonia infection a few days after the Dunedin cystoscopy. – this was an extremely distressing episode because I had been asked to be celebrant for a friend’s funeral, and the bereaved family had to find somebody else at the last moment)

The “waiting” experience…

Wearing a catheter is not much fun for someone who is trying to keep active and doing things.

·      Infections are always possible and this tends to limit what you can do. I have found that when you have a catheter in place, if you do hard physical activity it often leads to blood clots in the urine, and the possibility of infections. I was admitted to Dunedin hospital on October 5^th for four days because of an infection. (again that prevented me leading a Church service.) I have a big vege garden to plant and enjoy exercise.

·      It knocks your confidence in mixing with people. I am retired but am still doing chaplaincy at Fire Service, St John Ambulance and Speights brewery, leading two services a month at the local Church and volunteer in the community.  So I am mixing with people, lead services, funerals, etc.  I once had a catheter system come apart while browsing in a crowded hardware store. I was peeing uncontrollably!  For me the uncertainty involved in wearing a catheter in such circumstances increases the stresses involved incredibly.

·      It limits travel/holidays.  We have grandchildren in Wellington, Christchurch and Edinburgh. We cannot make plans to visit for two reasons. (1) We don’t know when surgery might be possible. (2) Once in the night as I tossed and turned in my sleep, I pulled out the connection to my night bag and woke up in a pool of pee. Imagine if that happened in a motel bed?  Summer visits can’t happen this year it seems!

·      It does nothing for your sex life! (enough said)

So while I am happy to sign the form agreeing to an extension of time, I plead for as much haste as possible. My wife has been phoning ACC and hospitals (She is aware of my state of mind) and disappointing delays in communication seem apparent. I know there are many in worse situations, but still feel compelled to ask for sensitivity to the depressing experience of waiting while wearing a catheter and trying still to lead a useful life.

Yours sincerely,  ....

Depression

I have to admit that this period of wearing a catheter has had a bigger impact on my "mental health" than my earlier experiences. I have a flip-flo valve so am not carrying a leg bag, but I plug in to a night bag over night. I have simply felt depressed. I find I feel like I am on the verge of tears, and watching TV, hearing a sad story, seeing a sad or challenging film, reading the newspaper will often bring tears to my eyes. (Today I watched a clip from the "Scully" film - the plane landing on the Hudson River- and my eyes filled with tears) Twice while leading church services recently I have had to "take a moment" to control my emotions, to  be able to carry on. This cannot be all blamed on the catheter. With my back problems earlier in the year and the re-emergence of prostate issues, I realise I am no longer "bullet proof".  But I am finding that more than ever, I tend to want to avoid mixing with people.  Sometimes the slightest anti-reaction from a person will throw me more than ever. e.g. the fire fighters have teased me for years. It is just part of the good natured banter of the place and a fire chief once told me, "They only do it to people they love." But these days I find I sometimes come away thinking I wished they wouldn't.  People want my opinion or involvement in something, and my first thought is, "Bugger off", where as I would generally welcome the challenge. My wife has been hounding both hospital and ACC and there seems to be some discrepancy in answers given, which is disappointing. 

Dig deep and keep going...

In it all I am learning to dig deep and keep going. I keep successfully leading Church services, I keep on mixing with and listening to people in my chaplaincies, and keep doing things. But I do choose on occasion to step back just to protect myself. 

UPDATE
The day after I posted this blog I received a letter from the Accident Compensation Corporation saying that they would fund my operation. There's light at the end of the tunnel! :-)

This is a photo a guy took during an Armistice Day Centenary Sunday service we held. We advertised and nearly doubled the size of the little congregation. There was a good response.

These photos are of a Command Unit dedication ceremony that followed a St John Ambulance Church parade I led.