{"id":7097,"date":"2020-01-27T14:14:51","date_gmt":"2020-01-27T14:14:51","guid":{"rendered":"https:\/\/www.thinkkidneys.nhs.uk\/kquip\/?p=7097"},"modified":"2020-01-27T15:12:54","modified_gmt":"2020-01-27T15:12:54","slug":"involving-patients-in-change-and-quality-improvement-adds-a-valuable-new-dimension-to-the-project","status":"publish","type":"post","link":"https:\/\/www.thinkkidneys.nhs.uk\/kquip\/blog\/involving-patients-in-change-and-quality-improvement-adds-a-valuable-new-dimension-to-the-project\/","title":{"rendered":"\u201cInvolving patients in change and quality improvement adds a valuable new dimension to the project\u201d"},"content":{"rendered":"\n
\"\"
Judy White (patient) and Graham White (husband)<\/em> <\/figcaption><\/figure><\/div>\n\n\n\n

How our kidney care journey began<\/strong><\/h3>\n\n\n\n

I was unaware\nof any problems with my kidneys until I had a blood test for other issues, some\nten years ago, and my kidney function was slightly lower than the norm. For the\nnext couple of years this was monitored, first by my GP, and then by Derby hospital.\nAbout 4 years ago, I was told that Dialysis would be required in a couple of\nyears, and I was given a book to read on the subject.  <\/p>\n\n\n\n

Both myself and\nmy husband\u2019s knowledge of Dialysis was very limited. We knew that people went\nto hospital 3 or 4 times a week for 3 or 4 hours at time. They would get\nconnected to a machine, which removed their blood, cleaned it and put it back\nin them. This appeared to us to be the easy option. I would just have to turn\nup at hospital, lie on a bed, perhaps read, have a snooze or maybe if allowed,\nlook at my phone, tablet or TV.<\/p>\n\n\n\n

This type of\nDialysis however, would seriously affect the lifestyle of my husband and\nmyself. For a start we live some 30 minutes away from the hospital, and it\ntakes 15 \u2013 20 minutes to park once you arrive. But what was more important to\nus is that we would have to curtail all our charitable activities (we open our garden\nfor charity, and often visit groups and clubs to give Garden Talks).<\/p>\n\n\n\n

Exploring home dialysis<\/strong><\/h3>\n\n\n\n

So, we thought\nwe would explore Home Dialysis \u2013 which we did! It was quite daunting! We were\nboth in our seventies, and although we believe that we are quite competent,\ncapable and efficient in the things we do, we would still be taking my life in\nour hands. <\/p>\n\n\n\n

How will we\nremember everything? What if we do something wrong? How much room do we need?\nWill we still be able to go away on holiday? How do we dispose of the waste?\nWhat happens if you are ill? What will it feel like carrying all this fluid in\nme? Will I be able to bend down?  Can I have a bath?  How big is the\nTube? Will I have to go on a special diet? Can I still have a glass of wine?\netc., etc., etc. <\/p>\n\n\n\n

There were so\nmany questions and concerns, many of which may seem trivial, and not what you\nwould want to ask at your 15 minute appointment with the Renal Consultant.  After all, at this meeting all you really\nwant to know about is your health, your future prognosis and your medication.<\/p>\n\n\n\n

As my kidney\nfunction continued to decline, the reality dawned that my life would never be\nthe same again. This thing was going to be with me twenty-four hours a day,\nseven days a week for the rest of my life. It was going to control my life and\nmy husband\u2019s life. How would we cope, there was so much to take in. As well as\nthe health and medical side of things, there were the practical aspects, the\nroutines, the dressing changes, the cleanliness, the set-up at home, the\ndeliveries, the storage\u2026<\/p>\n\n\n\n

At this stage,\nstill possibly 6 months before I would need to start dialysis, we spoke to a\nlady at our church, whose husband was a kidney patient, and who was doing\nPeritoneal Dialysis at home. She was very helpful, and we learned a lot from\nher. She invited us to go to her house and watch her husband carry out his\nexchange. This was brilliant! From this point we knew we could mirror what they\nwere doing, and cope with anything we were faced with. We went back a second\ntime to see their set-up and process and our confidence really grew. <\/p>\n\n\n\n

Getting involved in Quality Improvement<\/strong><\/h3>\n\n\n\n

It was probably\nfrom this point that we decided that we would do what we could to help other\npeople who were facing the prospects of dialysis and were experiencing the same\nconcerns and uncertainty that we had. <\/p>\n\n\n\n

The Renal Team\nat the hospital have been brilliant, and we cannot praise them enough. However,\ntalking to other patients, discussing experiences, sharing tips and practical\nideas is an added bonus, and when I was invited to attend the KQuIP meetings, I\nhad no hesitation in accepting.<\/p>\n\n\n\n

Since being\ninvolved we have attended the unit\u2019s Pre-Dialysis meetings on several\noccasions, been part of the new PD support group, attended patient social functions\nand have hosted a patient and PD team \u2018Afternoon Tea\u2019 in our Garden. <\/p>\n\n\n\n

In our opinion,\ninvolving patients in change and quality improvement adds a valuable new\ndimension to the project. The whole Renal Department at Derby are very good.\nThey will help with all they can, but there are still a number of things they\ndon\u2019t know. They have not experienced carrying an extra 2 litres of fluid\naround in their body, and quite what happens to it when your husband\ninadvertently drives too fast over a speed bump! They don\u2019t know what it feels\nlike when it\u2019s not draining properly, or when you are having bowel problems, or\nwhen your machine beeps in the middle of the night for no apparent reason. They\nwill not have experienced the dilemma in choosing clothes to be comfortable and\nwhich will fit the new shape of your body and your \u2018Exit Site\u2019, not to mention\nthe fact you can\u2019t even see your own \u2018Exit Site\u2019, which can be awkward if you\nhave to change your own dressing, or protect it ready for a shower.<\/p>\n\n\n\n

These lived\nexperiences are just a few examples (and there are many more) of the areas\nwhere we think patient input can offer new insights and perspectives to Quality\nImprovement.<\/p>\n","protected":false},"excerpt":{"rendered":"

How our kidney care journey began I was unaware of any problems with my kidneys until I had a blood test for other issues, some ten years ago, and my kidney function was slightly lower than the norm. For the next couple of years this was monitored, first by my GP, and then by Derby hospital. About 4 years ago, I was told that Dialysis would…<\/p>\n","protected":false},"author":133,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-7097","post","type-post","status-publish","format-standard","hentry","category-blog"],"acf":[],"yoast_head":"\n\u201cInvolving patients in change and quality improvement adds a valuable new dimension to the project\u201d - The Kidney Quality Improvement Partnership<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.thinkkidneys.nhs.uk\/kquip\/blog\/involving-patients-in-change-and-quality-improvement-adds-a-valuable-new-dimension-to-the-project\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u201cInvolving patients in change and quality improvement adds a valuable new dimension to the project\u201d - The Kidney Quality Improvement Partnership\" \/>\n<meta property=\"og:description\" content=\"How our kidney care journey began I was unaware of any problems with my kidneys until I had a blood test for other issues, some ten years ago, and my kidney function was slightly lower than the norm. 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