A brief blog more later….Just to say I have returned from Germany.

I thought ( idiot) I was just speaking for part of a 30 minute slot with other patients. I thought I would hear some interesting debate from policy makers, health and social care providers, NGOs and medical experts on continence care. I thought I would learn a lot. I thought I would see a bit of Berlin, read my book, take it a bit easy after a busy week last week and a gent /ceph double act to keep me upright.

Well… I was very wrong. I did listen to lots of mainly interesting debate from some amazing

erudite and dedicated people.  I spoke far more than 30 minutes. I spoke on film, I asked questions, I disagreed, I agreed and I agreed to disagree. I did not see Berlin. I did not see my book. I did however, see many naked men!….

I walked into the sauna by mistake. Apparently in Germany no clothes are allowed and it is unisex. HONESTLY!!  I beat a hasty retreat pretending to check the time on my non existent watch.

I did see a beer Keller and vast amounts of pork, sausage and cabbage. The hotel toilets were awesome, plentiful and had sound effects of twittering birds.

I made many new friends and talked far too much. (So unlike me I am sure you will agree? Maybe not. )  On the  most part my new friends shook off the pitying looks and sad faces as they introduced me as  the ‘patient ‘. I knew I had made it to the ranks of normal colleagues when they ‘took the pi**’! Yes, all the old jokes still get wheeled out, but this time ….the Chair, Co-Chair and their gang walked back to the hotel from said Beer Keller.

To their utter amazement, remember folks, this is a continence conference, they espied a MALE catheter on the pavement. Took a photo. Found me, then to the amusement of all giggled their glee…..’J J this must be yours !’ Those of you who know me so well, will remember that part of my ‘story’ is to explain a male catheter is needed for instillation of gentamicin. Its the way I tell it. Argh.

Anyhow , of course, the word got round, the story got bigger and the photo got tweeted. NO it was NOT mine!! So of the 3 patients, 1 carer and 350 delegates from across the world…let alone the residents of Berlin, someone uses a male catheter, in addition to me!

To sum up and I will write more later when I have caught up on some sleep, put the washing on and made the supper:

• How about a move to patient centred, value driven, guideline adherent service design? AW
• How about giving value to patients and their carers.  What about thinking about patients as thinking talking responsible PEOPLE.  By the way I am not your patient. I am a patient of my doctors. But just because you are a doctor in a roomful of doctors does not give you the licence to call me a patient nor look pityingly at me. JE

One nurse chose to challenge my assertion that Health Care Professionals do not have mandatory training in continence care.  I actually KNOW that is true. The following presentations of data, PROVED that was true. That is exactly the point. Finding a reason to be defensive to feel that patients are DEMANDING and FIGHTING. We will never agree if you never believe us.

• Finally for now, why on earth do we not take into account opportunity costs? The cost of poor quality care, reduction in economic terms of work hours for patients and or carers, let alone quality of life, leisure time and overall contribution to GDP? Why do we not integrate health and social care? So pads get funded by social care, catheters by health care. But if you need both ? God forbid anyone from either service ever actually TALKS to each other. Let’s take that a step further…If I was a diabetic I would get my needles syringes and dipsticks on prescription. As I am not a diabetic. I am not allowed to get them on prescription. In fact I have to order them and pay for them at the chemist. Actually that is ok. I do earn a bit of money and if that helps someone else on the NHS then good. But, nor am I allowed a ‘sharps’ box. But nurses give them to me in hospital. Nor can I hand them back in. No GP, chemist will take them. So I usually take them to hospitals and leave them in a clinic somewhere. As a tearful lady in the chemist last week explained. She too is not a diabetic. She is awaiting surgery of some sort. She cannot go to work. She is on benefits. She cannot get any of these either. There is a theory we can go to the drug addicts centre in town and get our sharps boxes there. You know what? I will not. I will just carry on lifting them from hospitals across the land.

Tim from OECD was great in the last slot. Then again I chatted to him on the bus. Yes we have an ageing population. Yes that will cost us. People are living longer because they get good care. BUT the overall effect is to move GDP from only 1% to 2%. But what is a HUGE issue is the astronomic cost of bad care which becomes ACUTE care.  So lets stop the rot NOW. Intervene early. Prevent and as one speaker explained, (if memory serves me right…) ‘ cure may not be possible, but life of quality is’.

More stories here: STORIFY

Auf Wiedersehen