Go with the Flow: Working together to improve bladder health and reduce urinary tract infections

Transcription

1 Go with the Flow: Working together to improve bladder health and reduce urinary tract infections Transcript of video My Experience of Catheterisation Margaret Shearer, Patient Experience I don t know how much of an introduction you got but good morning everybody. First of all I have to say my name is Margaret Shearer and I ve lived in South Ayrshire for most of my life. However, in 2002 whilst I was in Miami, Florida, I woke up one morning and to my surprise I was totally paralysed from the chest down. I had been fine the day before so I was blue lighted to Mount Sinai Medical Centre where I went through many, many tests. As a result of the paralysis, I was horizontal in the bed and in the midst of it all I was aware that I was catheterised as I had lost all function from the chest down. It took the, several days to find a diagnosis for me which apparently was a rare neurological condition caused by my immune system which had went into overdrive and had damaged the myelin sheath for 4 and a half inches in the spinal cord. This happened while I was having a nice peaceful sleep. One of the things they did with the indwelling catheter was I started getting UTIs. I remained horizontal in my bed with the UTIs and obviously in shock because of what had happened. I was unable to get any rehabilitation due to lots of test again being carried out because of the suddenness of the condition. But the UTIs were causing me 1. A lot of discomfort and 2. continuous headaches, and also preventing me from having the necessary rehabilitation. I was informed by my nurse that the rehabilitations centre within Mount Sinai Medical Centre was one of the best in Florida and it really saddened me that I was unable to participate in it. I did get a physiotherapist coming up to the bed to do passive therapy, but the main cause of it all was the UTIs. 1

2 After several week of many medications they still could not get rid of these UTIs so my named nurse then started talking to me about intermittent self catheters. We were aware of my paralysis, I had very poor core balance, I had very little control of the right hand - and I was right handed. We discussed it all and how could I do these intermittent self catheters because it was only my named nurse who was willing to do this in my bed. Nobody else who was taking over from her shift would take on that responsibility. So with a $10 bill from me she went down and brought back a shaving mirror from the local hospital shop. And she placed it on my bed and showed me how the catheters would work and where I could put them, and how I would empty them into a men s urinal bag. We tried it on numerous occasions with many accidents because I really wanted to be able to do this myself. I was able to get into a kind of half seated position - I still was not capable of sitting up but I did after 3 days manage to use an intermittent self catheter. Within a few days of only using these catheters my UTIs ceased. I was more shocked than the medical staff how quickly the antibiotics being given at that time and the indwelling catheter being taken out how quickly the UTIs stopped. But this allowed me to be wheelchaired down to the fantastic rehabilitation centres where I received 100% committed staff attendance. So I had to thank that named nurse for starting the ISCs and for putting me on a journey for what I hoped would be rehabilitation and progression. I had to remain in Mount Sinai medical centre for 3 months because my condition was too serious to be returned home. When I did come home I was placed in the Douglas Grant rehabilitation centre within Ayrshire central. and I remained there as an in-patient and an out patient for 2 and a half years. When I went there I was using the same stock that I had been given from my insurance in America. And when I started asking about self catheterisation - right away - they felt it was much easier for me - being in a wheelchair to use an indwelling catheter. 2

3 Now the condition I have is worsened by my immune system going into overdrive and I ve had relapses when it causes even,ore paralysis so why would I as a patient want to start using an indwelling catheter which would knock my immune system and could give me a further relapse. But they weighed it up and felt that perhaps I wasn t capable of using the ISCs and I then took it upon myself to Google continence services and hound there was one in Ayr hospital. I self referred myself there. That s where I met sisters Helen Begg and Suzanne McPhee and discussed the options of what could I do to continue on the ISCs? as I didn t want to go down the road of an indwelling catheter. I was well aware of my disabilities. And I can assure you being in a wheelchair is nothing compared to the issues of indwelling catheters and what they can do for me. I got fantastic support from the continence clinic in Ayr. I was shown a variety of different types of catheters. I decided to take away with me about 6 different kinds and I was also informed that not only could I get them through my GP - through my prescription, but I could also register with different companies who would deliver them direct to my door. I am now registered with a company and the deliveries come in a plain box complete with wet wipes, dry wipes, black disposable bags, so yes, it s been a big bonus as far as that information goes. But the freedom I have in my general life is that I can make sure that I cath before I go out. I can go on outings - maybe not on a daily basis because of fatigue but I have an adapted car - that s how I got here today. I travel the world, I took up scuba diving, I am an advanced scuba diver. I ve travelled into America, Canada, Asia, Australia. I have dived on numerous sites all over the world - complete with wet suite and catheters. I have managed fine! I now have 2 sons which live in Asia, so I m always in Asia, and I travel to Vietnam, Cambodia, Thailand, Indonesia, and if anybody here has travelled in these areas - these areas are not only rife in poverty, they are rife in hygiene standards. Despite the fact that I ISC up to 6 times a day I have never in any of my travels been the victim of a UTI. I take plenty of supplies on my hand luggage, I take wet wipes, all my disposable bags. I follow a self code of using. Hand washing procedures, wet wiping the vagina area before I use the ISC and it s easy enough to dispose of the catheters. They are very compact. I can take up to 4 weeks supply no problem in my hand luggage - no questions asked at customs going through on to the plane. On the plane - again - no issues with catheterisation despite the fact that I have serious mobility issues. 3

4 I started up a support group up in Scotland for the condition that I have as it s so rare. And we have 130 members that attend 6 meetings and we have them around Scotland. Glasgow, Perth, Stirling, Aberdeen, Edinburgh and Dundee on an annual basis. Many of my members have bladder and bowel issues. We never have a meeting that it is not brought up and it s always on the agenda. There are many people in my group who ve had indwelling catheters and I can now honestly say - none of them have. I m a big pro speaker on ISCs. On how I can travel and if I can do it in my condition then other people can as well. We have men in the group who were like oh, no way we re not going down that road, you ve no idea how difficult that would be. These men are now using the same company I use they have their ISC catheters delivered to their home discreetly. They are using the catheters - they have no issues - they are enrolled now in continence services in which ever city they live in. We have children in the group and only recently I had an 8 year old girl who asked me to come into the toilet with her when we were up in Aberdeen, with her mum with her and she showed me how she was now using ISCs. Now what a privilege for an 8 year old - for me to be asked by and 8 year old child to go into a toilet with her because she;d been taken off her indwelling catheter and she was now using ISCs and not only that she was using the eve catheter which I had taken samples on and she just thinks this is the best thing for her to take to school and she shows off to her friends. This is what helps me to pee. That catheter was introduced to her at one of our meetings by myself. We also now have health professionals have come to 2 of our meetings in the past year discussing catheters and giving out free samples. These people are now living their lives with no UTIs because the indwelling catheters have been taken out. I do a lot of travelling in the cars and before they had the catheters that come complete with the bags - my favourite catheter at the moment is the speedy cath. And I would use that - if I was stuck in traffic or couldn t get next to a toilet I would pull into a lay-by or a car parking space, slide from the drivers seat in to the passenger seat and open up - I always have a Lenor bottle - smells nice - and I would sit in the passenger seat and catheterise into the Lenor bottle, dispose of the catheter into the bottle, tighten the bottle, slide back to the drivers seat and go on my travels. I travel north to Aberdeen and south to London for AGMs as well. 4

5 I m fully independent as far as catheterising goes. In the last 10 years I ve had 5 UTIs and this apparent;y is a record. I do take a prophylactic antibiotic 250mg of Cephalexin every night. Some people are not happy about taking continuous antibiotics but you know what? It works for me. I m on immune suppressants because it s my immune system that s causing all the issues. In the last 10 years of the 5 UTIs I ve had 2 of them have caused severe paralysis and worsening of my condition, So I know that the UTIs are the cause of triggering my immune system which causes inflammation in the myelin and destroys it. So I m very wary of not wanting to catch a UTI because I know the damage it can do to me. So that s another reason why I always push for ISCs rather than indwelling catheters. Indwelling catheters - there s not proof but I received the medication on several occasions I ve had relapses - I need to have steroids - high doses of IV steroids and if you re aware these can not be given when people have UTIs and the UTI that I had in Mount Sinai prevented me for 5 days of getting IV steroids and who knows? If I d been given the IV steroids previously - within days of me contracting this condition I might not be sitting in a wheelchair at this present moment. My bladder and bowel functions have never come back. I use the piristene method for the bowel and I know we re not here for that at this present moment but using ISCs and the piristene on a 2 day basis have given me complete freedom and independence and full control of my bladder and bowel. To be told that you ll never walk again and you ll always be in a wheelchair for the rest of our life - 1. That s not always true. But 2. That s nothing to being told that you will never be able to pee or poo and that you will require 24 hour care and that you will require care assistants dealing with your personal needs. I started Botox in 2011 for the neurogenic issues I was having and I now get Botox as a repeat patient every 6 months at Ayr. And again, it s almost immediate - within the day or the next morning the spasms have gone and the Botox does last me for 6 months - has never lasted me longer than that. So, I m thankful to Mr Miller for having me in as a repeat patient. The next part I wanted to read from my notes because I don t want to miss out any of the points. 5

6 In 2014 I was very proud to have been accepted as a Clydesider working at the Commonwealth Games in Glasgow. I was assigned 17 full shifts. I was absolutely shocked that that s what they wanted me to do because I didn t think fatigue wise and mobility wise that I d be able to do it but actually I did. I completed all 17 shifts within the transport section dealing with VIPs and all the athletes. But one of the questions in my training that I was asked was - I was to think of a time when I received really great service and what impact did it have on me that changed my life? And in moments I knew my answer but in reflection I m able to expand on it. And my answer is without doubt the fantastic team that I had with my continence service. All of you here are going to be part of that team for other patients. Whether you re in the continence service or what other position you hold you re going to be dealing with patients who need your support on what type of catheters they can use. Sidetracking - where I live it s a sheltered complex and many of my neighbours have indwelling catheters. I am gobsmacked that they have these. Because these people are more mobile and fitter than I am. Why they have indwelling catheters and as a result get UTIs baffles me. I know it s for the ease of the nurses who are coming to empty them, I know it s for the ease of the family but I cannot understand why professionals will not go through ISCs with them. As I say these people are fitter than me, they are mobile, they can get to the toilet, they have to go to the toilet for their bowel even though they have bags attached to them so why are they not pushed to use ISCs. I discuss with them, they kind of put it over their shoulder, and I have just put it down to age and habit that it s more convenient them. But when UTIs hit them these people land up in hospital, they land in the Biggart for rehabilitation purposes before they can come back to their sheltered house and all I think is why? Why are they going through all this. I personally don t think there s a need for it. I m sitting there having ISCd since 2002 and I don t have the UTIs and I don t have all the issues that come with them. 6

7 But getting back to being a Clydesider and the fact that my number one answer was my continence team. Without your expertise, without your support and without your encouragement that I receive from my continence nurses I wouldn t be here today. Your expertise in ISC and bowel issues that you share with all your patients. The support and encouragement that you give so that we as patients can eventually take ownership of the procedures, all your knowledge of all the products when we say that disnae work, I can t do that, that s too flex, that bends, I can t get that in, I don t have enough of it to hold, it s too slimy, it s too slippy, all your expertise and what you can reply is so impressionable to me. The continence service is only a phone call away, or an and it gives me even more support so eventually what we encounter is a big problem you can put into perspective for us. Never underestimate the difference you make to the patients who require ISC or bowel support. The majority of the achievements that I have already done previously mentioned I could not have accomplished without ISC and piristene. Being a wheelchair user is so much easier to accept, and I can easily get used to it s restrictions on my life. But when I was made aware of the restrictions I would have with my bladder and bowels it was devastating news. Without ISC and piristene I would not be here. Psychologically I wouldn t be here. I know that I don t want to be dependent on carers dealing with my bladder and bowel issues and having eventual UTIs and different health concerns and all the restrictions it would place on me, giving me more paralysis and eventually landing up in long term care. So, because of you I m here to speak my thoughts. I was invited here to give a patient s perspective of ISC. I m not here to plug any of the products - although I have found that the Coloplast Speedicath is the best one for me. But I am so grateful for the company for the designers of their goods and for the manufacturers. Never undervalue the important role that you have in your patients successfully dealing with what most others take for granted. Because of what you do I m here. My life for the past 15 years - although it has had many frustrating periods - has been on the whole fantastic and exhilarating! 7

8 So privileged am I for all the support I have received. I extend my grateful thanks to all of you and I thank the continence service for inviting me here to give this patients experience in dealing with ISC. Thank you very much This resource may be made available, in full or summary form, in alternative formats and community languages. Please contact us on or altformats@nes.scot.nhs.uk to discuss how we can best meet your requirements. NHS Education for Scotland You can copy or reproduce the information in this resource for use within NHSScotland and for non-commercial educational purposes. Use of this document for commercial purposes is permitted only with the written permission of NES. 8