{"id":123,"date":"2023-01-24T11:57:57","date_gmt":"2023-01-24T11:57:57","guid":{"rendered":"https:\/\/mft.staging.every1preview.co.uk\/hcc\/?p=123"},"modified":"2025-08-21T15:43:42","modified_gmt":"2025-08-21T15:43:42","slug":"my-top-tips-for-living-with-sickle-cell","status":"publish","type":"post","link":"https:\/\/mft.nhs.uk\/hcc\/my-top-tips-for-living-with-sickle-cell\/","title":{"rendered":"My Top Tips for Living with Sickle Cell"},"content":{"rendered":"<div class=\"wpb-content-wrapper\"><p>[vc_row][vc_column][vc_column_text css=&#8221;&#8221;]<\/p>\n<h2>My take away tips for living with Sickle Cell<\/h2>\n<p><em>by Elizabeth Naamorkor Caulley, patient representative\u00a0<\/em><\/p>\n<p>Drink at least 2-3 litres of water per day<\/p>\n<p>When you are feeling tired eat <a href=\"https:\/\/mft.nhs.uk\/app\/uploads\/sites\/16\/2023\/02\/Best-foods-to-boost-red-blood-cells.docx\"><strong>food to boost your red blood cells <\/strong><\/a><\/p>\n<p><strong>Clothing<\/strong> \u2013 wear thermal undergarment and socks (M&amp;S outlets)<\/p>\n<p><strong>Bedding<\/strong> \u2013 electric blanket (safety first) and flannelette sheets for autumn, winter &amp; spring<\/p>\n<p>Inform <strong>utilities companies (water, gas, electricity) <\/strong>about sickle cell disease and to be put on their priority list<\/p>\n<p>Get your <strong>hospital treatment plan <\/strong>from the Sickle Cell Team at the hospital<\/p>\n<p>Carry your <strong>medication<\/strong> with you <strong>Always<\/strong><\/p>\n<p>Keep track of your <strong>medical appointments<\/strong><\/p>\n<p>Get <strong>prescriptions<\/strong> filled\/refilled regularly<\/p>\n<p>Get<strong> Regular<\/strong> appt for dental, eyes etc.<\/p>\n<p>Practice <strong>self-care <\/strong>&#8211; exercise (walking &amp; yoga), healthy eating, sleep, drink plenty of water and seek professional help when needed by contacting sickle and thalassemia centre.<\/p>\n<p><strong>Flu<\/strong> &amp; Covid vaccinations<\/p>\n<p><strong>Safe<\/strong> use of medications<\/p>\n<ul>\n<li>Ask your GP\/Consultant about the benefits and risks of your medicine.<\/li>\n<li>Take your medicine exactly as prescribed.<\/li>\n<li>Report any side effects of your medicine.<\/li>\n<\/ul>\n<p><strong>Social Security<\/strong> for personal independent payment, go to De Monte University website for information on Pip <a href=\"https:\/\/sicklecellwork.dmu.ac.uk\/social-security\/\">https:\/\/sicklecellwork.dmu.ac.uk\/social-security\/<\/a>. It has a real anonymised example of an applicant with SCD completing a PIP assessment form and renewal of PIP<\/p>\n<p><strong>Access to work<\/strong> &#8211; can help you get or stay in work if you have a physical or mental health condition or disability.<\/p>\n<p>The support you get will depend on your needs. Through Access to Work, you can apply for:<\/p>\n<ul>\n<li>a grant to help pay for practical support with your work<\/li>\n<li>support with managing your mental health at work<\/li>\n<li>money to pay for communication support at job interviews<\/li>\n<\/ul>\n<p>Access to Work could give you a grant to help pay for things like:<\/p>\n<ul>\n<li>BSL\u00a0interpreters, lip speakers or note takers<\/li>\n<li>adaptations to your vehicle so you can get to work<\/li>\n<li><strong>taxi fares to work<\/strong> or a support worker if you cannot use public transport<\/li>\n<li>a support worker or job coach to help you in your workplace<\/li>\n<\/ul>\n<p>Website: <a href=\"https:\/\/www.gov.uk\/access-to-work\">https:\/\/www.gov.uk\/access-to-work<\/a><\/p>\n<ul>\n<li><strong>Sickle Cell &amp; Employment<\/strong> \u2013 Know your rights under The Equality Act 2010<br \/>\nGiven the nature of SCD it is likely that most people with the diagnosis will fall within the definition of disabled for the purposes of the Equality Act 2010.<\/li>\n<li>Job Application Disclosure of Sickle Cell<\/li>\n<li>Flexible working or Working from Home<\/li>\n<li>Individual Support Plan<\/li>\n<li>Sickness Absences<\/li>\n<\/ul>\n<h2>Useful Links<\/h2>\n<p><a href=\"https:\/\/www.gov.uk\/access-to-work\">Access to Work<\/a>\u00a0If you have a paid job, or are about to start or return to one, you can apply for an\u00a0<em>Access to Work<\/em>\u00a0grant to pay for:<\/p>\n<ul>\n<li>special equipment, adaptations, or support worker services to help you do things like answer the phone or go to meetings<\/li>\n<li>help getting to and from work<\/li>\n<\/ul>\n<p><a href=\"https:\/\/www.benefitsandwork.co.uk\/\">Benefits and Work<\/a><\/p>\n<p><a href=\"https:\/\/www.citizensadvice.org.uk\/\">Citizen\u2019s Advice Bureau<\/a><\/p>\n<p><a href=\"https:\/\/dls.org.uk\/\">Disability Law Service<\/a>\u00a0Disability Law Service is a unique charity that has been providing\u00a0<a href=\"https:\/\/dls.org.uk\/free-advice\/\">free legal advice<\/a>\u00a0and\u00a0representation\u00a0for disabled people since 1975. This includes people living with sickle cell.<\/p>\n<p><a href=\"https:\/\/www.disabilityrightsuk.org\/\">Disability Rights UK<\/a><\/p>\n<p>Disability Rights UK (The Right to Participate in Employment)\u00a0Guidance on:<\/p>\n<ul>\n<li>Reasonable adjustments not made in recruitment process<\/li>\n<li>Asked about disability or health condition prior to job offer<\/li>\n<li>Support and Adjustments to do your job<\/li>\n<li>Inaccessible premises<\/li>\n<li>Sickness absence<\/li>\n<li>Disciplinary process<\/li>\n<li>Dismissal<\/li>\n<li>Promotion and Training<\/li>\n<li>Equal Pay<\/li>\n<li>Redundancy<\/li>\n<li>Harassment<\/li>\n<li>Victimisation<\/li>\n<li>Failure to provide support and adjustments to do your job<\/li>\n<\/ul>\n<p><a href=\"https:\/\/equalityhumanrights.com\/en\">Equality and Human Rights Commission<\/a>:<\/p>\n<p><strong><em>Trades Union Congress\u00a0&#8211; <\/em><\/strong><em>practical advice for trade union reps on issues they are likely to encounter when dealing with the range of issues that can arise in the workplace<\/em><\/p>\n<p><a href=\"https:\/\/www.tuc.org.uk\/union-reps\">https:\/\/www.tuc.org.uk\/union-reps<\/a><\/p>\n<p>Resources for Equality\u00a0&amp; Discrimination: Age, Disability, Gender, LGBT+, Race, Religion<\/p>\n<p><a href=\"https:\/\/www.tuc.org.uk\/union-reps\/equality-and-discrimination\">https:\/\/www.tuc.org.uk\/union-reps\/equality-and-discrimination<\/a><\/p>\n<p>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text]<\/p>\n<p>[\/vc_column_text][\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>[vc_row][vc_column][vc_column_text css=&#8221;&#8221;] My take away tips for living with Sickle Cell by Elizabeth Naamorkor Caulley, patient representative\u00a0 Drink at least 2-3 litres of water per day When you are feeling tired eat food to boost your red blood cells Clothing \u2013 wear thermal undergarment and socks (M&amp;S outlets) Bedding \u2013 electric blanket (safety first) and [&hellip;]<\/p>\n","protected":false},"author":58,"featured_media":981,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[11],"tags":[],"class_list":["post-123","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-carer-resources"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.9 - 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