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href="http://web.archive.org/web/20220928101025/https://civilservice.blog.gov.uk/">Civil Service</a> </h1> <div class="bottom blog-meta"> <dl> <dt>Organisations:</dt> <dd><a href="http://web.archive.org/web/20220928101025/https://www.gov.uk/government/organisations/civil-service">Civil Service</a></dd> </dl> </div> </div> <div class="govuk-grid-column-one-third"> <div class="logo-container hidden-mobile"> <img src="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2014/09/civil-service-logo-110x80.jpg" alt="Civil Service"> </div> <div class="bottom search-container"> <form role="search" method="get" id="searchform" class="form-search" action="http://web.archive.org/web/20220928101025/https://civilservice.blog.gov.uk/"> <label class="govuk-visually-hidden" for="s">Search for:</label> <div class="search-input-wrapper"> <input type="search" value="" name="s" id="s" class="search-query" placeholder="Search blog"> <input type="submit" id="searchsubmit" value="Search" class="btn"> </div> </form> </div> </div> </div> </header> <main id="content" class="govuk-grid-row" role="main"> <div class="govuk-grid-column-two-thirds main-content"> <article class="clearfix post-26878 post type-post status-publish format-standard has-post-thumbnail hentry category-a-great-place-to-work category-a-modern-civil-service category-an-ambitious-civil-service"> <div class="visible-print"> <p>https://civilservice.blog.gov.uk/2022/09/28/organ-donation-is-the-best-gift-of-life/</p> </div> <header> <h1 class="govuk-heading-xl">Organ donation is the best gift of life</h1> <div class="govuk-body-s"> <span class="govuk-visually-hidden">Posted by: </span> <a href="http://web.archive.org/web/20220928101025/https://civilservice.blog.gov.uk/author/alex-taylor/" title="Posts by Alex Taylor" class="author url fn" rel="author">Alex Taylor</a>, <span class="govuk-visually-hidden">Posted on: </span><time class="updated" datetime="2022-09-28T08:29:12+00:00" pubdate>28 September 2022</time> - <span class="govuk-visually-hidden">Categories: </span> <a href="http://web.archive.org/web/20220928101025/https://civilservice.blog.gov.uk/category/a-great-place-to-work/" rel="category tag">A great place to work</a>, <a href="http://web.archive.org/web/20220928101025/https://civilservice.blog.gov.uk/category/a-modern-civil-service/" rel="category tag">A Modern Civil Service</a>, <a href="http://web.archive.org/web/20220928101025/https://civilservice.blog.gov.uk/category/an-ambitious-civil-service/" rel="category tag">An Ambitious Civil Service</a></div> </header> <div class="entry-content"> <p><img class="wp-image-26887 size-full" src="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/dialysis.jpg" alt="A patient undergoes dialysis" width="960" height="640" srcset="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/dialysis.jpg 960w, http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/dialysis-300x200.jpg 300w, http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/dialysis-768x512.jpg 768w" sizes="(max-width: 960px) 100vw, 960px"/></p> <h3><b>To mark NHS Organ Donation Week (26 September to 2 October), civil servant <em>Alex Taylor</em> shares his journey and the challenges as he awaits a kidney transplant.</b></h3> <p><span style="font-weight: 400">Living through a global pandemic has brought home how fragile and important our health can be. Organ disease and organ failure are some of the leading causes of long-term illness and death in the UK, directly affecting the lives of millions of people and their loved ones.</span></p> <p><span style="font-weight: 400">During NHS Organ Donation Week, the NHS and charities encourage people to register their wishes and talk with their loved ones about their organ donation decision.</span></p> <h4><b>My story</b></h4> <p><span style="font-weight: 400">I didn’t know much about organ donation until it affected me personally. Two years ago, I was a healthy 27-year-old, when I began to feel queasy and increasingly ill over a period of weeks, until I was hospitalised. I was informed that my kidneys were irreversibly damaged as a result of a rare auto-immune condition named Goodpasture’s, and I later found out that my heart was also weakened.</span></p> <figure id="attachment_26890" class="thumbnail wp-caption alignleft" style="width: 300px"><img loading="lazy" class="wp-image-26890 size-medium" src="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/Alex-Taylor-Senior-Policy-Advisor-Department-for-Levelling-Up-Housing-and-Communities-300x200.jpg" alt="Alex Taylor, Senior Policy Advisor, Department for Levelling Up, Housing and Communities" width="300" height="200" srcset="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/Alex-Taylor-Senior-Policy-Advisor-Department-for-Levelling-Up-Housing-and-Communities-300x200.jpg 300w, http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/Alex-Taylor-Senior-Policy-Advisor-Department-for-Levelling-Up-Housing-and-Communities-768x512.jpg 768w, http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/Alex-Taylor-Senior-Policy-Advisor-Department-for-Levelling-Up-Housing-and-Communities.jpg 960w" sizes="(max-width: 300px) 100vw, 300px"/><figcaption class="caption wp-caption-text">Author, Alex Taylor</figcaption></figure> <p><span style="font-weight: 400">Living with organ failure is restrictive in numerous ways. I am dependent on dialysis, a machine to clean my blood, five days a week for five hours a session in order to live.</span></p> <p><strong>Constantly tired</strong></p> <p><span style="font-weight: 400">Thankfully, I can do this at home, which has been a huge advantage, but it’s still exhausting. It is difficult to remember what it is like not to feel constantly tired. I follow a low potassium and low phosphate diet: no tomatoes, cheese, chocolate, coffee (hard for an addict like me!), and I can drink very little fluid. I can’t travel or walk far without feeling breathless.</span></p> <p><span style="font-weight: 400">Fortunately, there are things I can do to keep happy: I can walk short distances to the park and enjoy the fresh air, spend time with loved ones, and I work part-time in DLUHC with the Civil Service being an enormously supportive employer.</span><span style="font-weight: 400"> </span></p> <h4><strong>Civil Service support</strong></h4> <p><span style="font-weight: 400">After I fell ill, my department and line manager supported me back into work through a phased return, and then to a more permanent move to working part-time. I’m able to work flexibly around my dialysis treatment and my hospital appointments. I am grateful for the opportunity to continue working as it benefited my recovery to focus on something other than my condition and treatment.</span><span style="font-weight: 400"> </span></p> <p><span style="font-weight: 400">However, I miss the freedom of my old life, and I know that the only way I can get it back is through a kidney transplant and potentially a heart transplant.</span></p> <h4><b>What is organ donation?</b></h4> <p><span style="font-weight: 400">Organ transplantation can involve a living donor or a deceased donor. Each year across the UK, around 1,000 people are living donors, usually to family or a friend, although there is also a growing number of altruistic donors. For those without a compatible living donor, the next option is joining the waiting list for a deceased donor.</span></p> <p><span style="font-weight: 400">Unfortunately, the average waiting time for a kidney from a deceased donor is two to three years, with more than 6,000 people currently on the waiting list. For Black, Asian and Minority Ethnic patients, the waiting list is even longer due to a chronic shortage of donors. Sadly, hundreds of people die every year waiting for an organ transplant.</span><span style="font-weight: 400"> </span></p> <p>On 20 May 2020, thanks to the Department of Health and Social Care (DHSC), the Organ Donation (Deemed Consent) Act 2019 came into effect and introduced a new system of consent for organ and tissue donation in England, known as ‘opt-out'. The new legislation means that all adults over 18 will be considered potential organ and tissue donors after death, unless they decide they do not want to be a donor, have nominated a representative to make a decision on their behalf after death, or are in an excluded group.</p> <figure id="attachment_26880" class="thumbnail wp-caption alignright" style="width: 300px"><img loading="lazy" class="wp-image-26880 size-medium" src="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/ROG48913-1-300x200.jpg" alt="Department of Health and Social Care Office, 39 Victoria Street, lit up this week to mark organ donation week." width="300" height="200" srcset="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/ROG48913-1-300x200.jpg 300w, http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/ROG48913-1-768x512.jpg 768w, http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/ROG48913-1.jpg 960w" sizes="(max-width: 300px) 100vw, 300px"/><figcaption class="caption wp-caption-text">DHSC Office, 39 Victoria Street lit up this week to mark Organ Donation Week</figcaption></figure> <p><span style="font-weight: 400">This is a hugely positive change that will enable many more organs from deceased donors to be transplanted. But although the system has changed, families are still consulted before donation goes ahead. For many families, making a decision where the deceased person’s wishes are unclear is deeply distressing. Fewer than half of families agree to organ donation going ahead if they’re unaware of their loved one’s decision to be a donor. This rises to 90% when the decision is known.</span><span style="font-weight: 400"> </span></p> <p><span style="font-weight: 400"><img loading="lazy" class="size-medium wp-image-26901 alignleft" src="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/NHSBT-Organ-donation-week-image-1-300x116.jpg" alt="Organ Donation Week" width="300" height="116" srcset="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/NHSBT-Organ-donation-week-image-1-300x116.jpg 300w, http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/NHSBT-Organ-donation-week-image-1-768x296.jpg 768w, http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/NHSBT-Organ-donation-week-image-1.jpg 960w" sizes="(max-width: 300px) 100vw, 300px"/>This is why the NHS is still asking people to register their wishes online on the NHS Organ Donor Register and to discuss the issue with their families. This means that, whatever a person’s decision, their family will be supported by knowing their wishes.</span></p> <p><span style="font-weight: 400">Organ donation is one of the most personal decisions an individual can make, and there are many reasons why a person may or may not decide to be a donor. I would encourage everyone to make their wishes known and speak with their family about their decision.</span></p> <div class="highlight"> <h3><span style="color: #800080"><b>How you can help<span style="font-weight: 400"><img loading="lazy" class="size-medium wp-image-26911 alignright" src="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/Alex-blog-photo-300x200.jpg" alt="Lifesaving drugs that help dialysis patients" width="300" height="200" srcset="http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/Alex-blog-photo-300x200.jpg 300w, http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/Alex-blog-photo-768x512.jpg 768w, http://web.archive.org/web/20220928101025im_/https://civilservice.blog.gov.uk/wp-content/uploads/sites/86/2022/09/Alex-blog-photo.jpg 960w" sizes="(max-width: 300px) 100vw, 300px"/></span></b></span></h3> <p><a href="http://web.archive.org/web/20220928101025/https://www.organdonation.nhs.uk/register-your-decision/"><span style="font-weight: 400">Register your wishes online</span></a><span style="font-weight: 400">.</span></p> <p><span style="font-weight: 400">Find out more about </span><a href="http://web.archive.org/web/20220928101025/http://www.organdonation.nhs.uk/livingdonation"><span style="font-weight: 400">donating an organ to a loved one or someone you don’t know</span></a><span style="font-weight: 400">.</span></p> <p><a href="http://web.archive.org/web/20220928101025/http://www.blood.co.uk/"><span style="font-weight: 400">Give blood</span></a><span style="font-weight: 400">; this is an amazing gift to people who need it in an emergency or for ongoing medical treatment.</span></p> </div> <div class="govuk-grid-row like-row"><div class="govuk-grid-column-one-half like-column"><button class="button-like" data-id="26878" data-prevent-double-click="true" aria-expanded="false" id="like-button"> <svg width="26" height="26" aria-hidden="true" focusable="false" role="img" xmlns="http://www.w3.org/2000/svg" viewbox="0 0 512 512"><path fill="currentColor" d="M466.27 286.69C475.04 271.84 480 256 480 236.85c0-44.015-37.218-85.58-85.82-85.58H357.7c4.92-12.81 8.85-28.13 8.85-46.54C366.55 31.936 328.86 0 271.28 0c-61.607 0-58.093 94.933-71.76 108.6-22.747 22.747-49.615 66.447-68.76 83.4H32c-17.673 0-32 14.327-32 32v240c0 17.673 14.327 32 32 32h64c14.893 0 27.408-10.174 30.978-23.95 44.509 1.001 75.06 39.94 177.802 39.94 7.22 0 15.22.01 22.22.01 77.117 0 111.986-39.423 112.94-95.33 13.319-18.425 20.299-43.122 17.34-66.99 9.854-18.452 13.664-40.343 8.99-62.99zm-61.75 53.83c12.56 21.13 1.26 49.41-13.94 57.57 7.7 48.78-17.608 65.9-53.12 65.9h-37.82c-71.639 0-118.029-37.82-171.64-37.82V240h10.92c28.36 0 67.98-70.89 94.54-97.46 28.36-28.36 18.91-75.63 37.82-94.54 47.27 0 47.27 32.98 47.27 56.73 0 39.17-28.36 56.72-28.36 94.54h103.99c21.11 0 37.73 18.91 37.82 37.82.09 18.9-12.82 37.81-22.27 37.81 13.489 14.555 16.371 45.236-5.21 65.62zM88 432c0 13.255-10.745 24-24 24s-24-10.745-24-24 10.745-24 24-24 24 10.745 24 24z"></path></svg><span class="button-like-text">Like this</span> </button></div><div class="govuk-grid-column-one-half like-column right"><span class="circle"><svg width="16" height="16" aria-hidden="true" focusable="false" role="img" xmlns="http://www.w3.org/2000/svg" viewbox="0 0 512 512"><path fill="currentColor" d="M104 224H24c-13.255 0-24 10.745-24 24v240c0 13.255 10.745 24 24 24h80c13.255 0 24-10.745 24-24V248c0-13.255-10.745-24-24-24zM64 472c-13.255 0-24-10.745-24-24s10.745-24 24-24 24 10.745 24 24-10.745 24-24 24zM384 81.452c0 42.416-25.97 66.208-33.277 94.548h101.723c33.397 0 59.397 27.746 59.553 58.098.084 17.938-7.546 37.249-19.439 49.197l-.11.11c9.836 23.337 8.237 56.037-9.308 79.469 8.681 25.895-.069 57.704-16.382 74.757 4.298 17.598 2.244 32.575-6.148 44.632C440.202 511.587 389.616 512 346.839 512l-2.845-.001c-48.287-.017-87.806-17.598-119.56-31.725-15.957-7.099-36.821-15.887-52.651-16.178-6.54-.12-11.783-5.457-11.783-11.998v-213.77c0-3.2 1.282-6.271 3.558-8.521 39.614-39.144 56.648-80.587 89.117-113.111 14.804-14.832 20.188-37.236 25.393-58.902C282.515 39.293 291.817 0 312 0c24 0 72 8 72 81.452z"></path></svg></span><span class="like-count">4 Likes</span></div></div> </div> <div class="footer single"> </div> </article> <nav class="page-numbers-container page-navigation" aria-label="Pagination"> <div class="previous"> <a href="http://web.archive.org/web/20220928101025/https://civilservice.blog.gov.uk/2022/09/27/nearly-10-million-people-tuned-into-a-map-of-a-queue/" rel="prev">Nearly 10 million people tuned into a map of a queue!</a> </div> <div class="next"> </div> </nav> <h2 class="govuk-visually-hidden">Sharing and comments</h2> <div class="icons-buttons"> <h3>Share this page</h3> <ul> <li> <a target="_blank" href="http://web.archive.org/web/20220928101025/https://twitter.com/intent/tweet?original_referer&url=https%3A%2F%2Fcivilservice.blog.gov.uk%2F2022%2F09%2F28%2Forgan-donation-is-the-best-gift-of-life%2F&text=Organ+donation+is+the+best+gift+of+life" class="twitter">Twitter</a> </li> <li> <a target="_blank" href="http://web.archive.org/web/20220928101025/https://www.facebook.com/sharer/sharer.php?u=https%3A%2F%2Fcivilservice.blog.gov.uk%2F2022%2F09%2F28%2Forgan-donation-is-the-best-gift-of-life%2F" class="facebook">Facebook</a> </li> <li> <a target="_blank" href="http://web.archive.org/web/20220928101025/https://www.linkedin.com/shareArticle?url=https%3A%2F%2Fcivilservice.blog.gov.uk%2F2022%2F09%2F28%2Forgan-donation-is-the-best-gift-of-life%2F" class="linkedin">LinkedIn</a> </li> <li> <a href="http://web.archive.org/web/20220928101025/mailto:/?subject=I wanted to share this post with you from Civil Service&body=Organ donation is the best gift of life https://civilservice.blog.gov.uk/2022/09/28/organ-donation-is-the-best-gift-of-life/" class="email">Email</a> </li> </ul> <div class="clearfix"></div> </div> <section id="comments" class="comments"> <h3 class="govuk-heading-m">1 comment</h3> <ol class="media-list"> <li id="comment-95229" class="comment even thread-even depth-1 media comment-95229"> <div class="media-body"> <p class="govuk-body media-heading"> <span class="govuk-visually-hidden">Comment by</span> <span class="author">Kay Ellis</span> <span class="govuk-visually-hidden">posted on</span> <time datetime="2022-09-28T08:53:49+00:00">on 28 September 2022</time> </p> <div class="comment-body"> <p>Alex, thank you very much for sharing your story with us. I really hope you receive your transplants soon.</p> <div class="comment-links"> <a href="http://web.archive.org/web/20220928101025/https://civilservice.blog.gov.uk/2022/09/28/organ-donation-is-the-best-gift-of-life/#comment-95229" rel="external nofollow">Link to this comment</a> </div> <a rel="nofollow" class="comment-reply-link" href="http://web.archive.org/web/20220928101025/https://civilservice.blog.gov.uk/2022/09/28/organ-donation-is-the-best-gift-of-life/?replytocom=95229#respond" data-commentid="95229" data-postid="26878" data-belowelement="comment-95229" data-respondelement="respond" data-replyto="Reply to Kay Ellis" aria-label="Reply to Kay Ellis">Reply</a> </div> </div></li> </ol> </section> <section id="respond" class="leave-a-comment"> <header aria-label="Leave a comment" class="govuk-grid-row group"> <div class="govuk-grid-column-full"> <h3 class="govuk-heading-m">Leave a comment</h3> <p class="govuk-body cancel-comment-reply"><a rel="nofollow" id="cancel-comment-reply-link" href="/web/20220928101025/https://civilservice.blog.gov.uk/2022/09/28/organ-donation-is-the-best-gift-of-life/#respond" style="display:none;">Cancel reply</a></p> </div> </header> <form action="http://web.archive.org/web/20220928101025/https://civilservice.blog.gov.uk/wp-comments-post.php" method="post" id="commentform" class="group"> <div class="govuk-form-group"> <a name="comment_field"></a> <label for="comment" class="govuk-label">Enter your comment</label> <textarea class="govuk-textarea required" name="comment" id="comment" cols="50" rows="10" required aria-required="true"></textarea> </div> <div class="js-comment-extra"> <div class="govuk-form-group"> <a name="name_field"></a> <label class="govuk-label" for="author">Name</label> <input type="text" class="govuk-input text required" name="author" id="author" value="" required aria-required="true" autocomplete="name"> </div> <div class="govuk-form-group"> <a name="email_field"></a> <label class="govuk-label" for="email">Email</label> <span class="govuk-hint">We only ask for your email address so we know you're a real person</span> <input type="email" class="govuk-input text required" name="email" id="email" value="" required aria-required="true" autocomplete="email"> </div> <p style="display: none;"><input type="hidden" id="akismet_comment_nonce" name="akismet_comment_nonce" value="dc3ee45a7a"/></p><div class="govuk-form-group"><div class="dxw-subscription"><fieldset class="govuk-fieldset" style="float:none;"><div class="govuk-checkboxes"><div class="govuk-checkboxes__item"><input class="govuk-checkboxes__input" id="subscribe_to_comment" name="subscribe_to_comment" type="checkbox" value="yes"><label class="govuk-label govuk-checkboxes__label" for="subscribe_to_comment">Email me if someone replies to my comment</label></div></div></fieldset></div></div><p style="display: none !important;"><label>Δ<textarea name="ak_hp_textarea" cols="45" rows="8" maxlength="100"></textarea></label><input type="hidden" id="ak_js_1" name="ak_js" value="230"/><script>document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() );</script></p> <button class="govuk-button" data-module="govuk-button"> Submit comment </button> </div> <input type="hidden" name="comment_post_ID" value="26878" id="comment_post_ID"> <input type="hidden" name="comment_parent" id="comment_parent" value="0"> <div class="comment-privacy-notice dxw-subscription"> <p class="govuk-inset-text">By submitting a comment you understand it may be published on this public website. 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