") no-repeat center center;background-size:10px 16px;content:' '}@media(min-width:768px){.UeJNJ::before{display:none}}.rAFIl{width:100%;box-sizing:border-box}@media(min-width:768px){.rAFIl{max-width:634px}}@media(min-width:1250px){.rAFIl{max-width:622px}}.dLkuvY{display:flex;width:auto;box-sizing:border-box;align-items:center;justify-content:flex-start;gap:4px;color:#ec1a2e;color:light-dark(#ec1a2e,#ec1a2e)}.jrwZqm{display:block;font:bold 14px/20px 'Indy Sans','Indy Sans Fallback',sans-serif;text-decoration-line:underline;margin-block:0;text-align:center}.dHXFkr{display:inline-flex;align-items:center;justify-content:center;gap:4px}.dHXFkr:hover .sc-aja53j-2,.dHXFkr:hover .sc-a5wy94-0{color:#ac2a2c;color:light-dark(#ac2a2c,#f58992)}.lcJUSj{font:normal 16px/20px 'Indy Sans','Indy Sans Fallback',sans-serif}.hJPJVF{display:flex;position:relative;overflow:hidden;width:auto;height:40px;flex-direction:column;order:-1;gap:8px;opacity:1;transition:all .5s ease-in-out;transition-behavior:allow-discrete}.hJPJVF::after{--fade-from:rgba(255,255,255,0);--fade-mid:rgba(255,255,255,0.5);--fade-to:#fff;position:absolute;bottom:0;left:0;z-index:1;width:100%;height:40px;background-image:linear-gradient(to bottom,var(--fade-from) 0,var(--fade-mid) 50%,var(--fade-to) 100%);content:'';opacity:1;pointer-events:none;transition:opacity 150ms ease-out}@supports(color:light-dark(red,red)){.hJPJVF::after{--fade-from:light-dark(rgba(255,255,255,0),rgba(0,0,0,0))}}@supports(color:light-dark(red,red)){.hJPJVF::after{--fade-mid:light-dark(rgba(255,255,255,0.5),rgba(0,0,0,0.5))}}@supports(color:light-dark(red,red)){.hJPJVF::after{--fade-to:light-dark(#fff,#000)}}@media(min-width:768px){.PdmgT{order:-1}}@media(min-width:768px){.eMEmGu{display:flex;position:relative;align-items:flex-start;margin-top:12px}}@media(min-width:1000px){.lfyduH .taboola{display:none}}.lfyduH:has(#taboola-carousel-thumbnails){min-height:426px}.lfyduH:has(#taboola-mid-article-thumbnails-crime){min-height:405px}@media(min-width:1000px){.lfyduH:has(#taboola-carousel-thumbnails),.lfyduH:has(#taboola-mid-article-thumbnails-crime){min-height:0}}.iUtUOL .tp-container-inner,.iUtUOL .sc-1suqprf-0{position:relative;box-shadow:0 -22px 16px 22px rgba(255,255,255,0.95);box-shadow:0 -22px 16px 22px light-dark(rgba(255,255,255,0.95),rgba(0,0,0,0.95))}.iUtUOL.closed{display:none}.dcGiwu{width:32px}.dcGiwu,.dcGiwu:focus{color:#3b5998;color:light-dark(#3b5998,#627aac)}.dcGiwu:hover,.dcGiwu:active,.dcGiwu:focus-visible{color:#2f4779;color:light-dark(#2f4779,#9cabcb)}@media(min-width:768px){.dcGiwu.mobile-only{display:none}}.fOiFgH{width:32px}.fOiFgH,.fOiFgH:focus{color:#000;color:light-dark(#000,#4e4e4e)}.fOiFgH:hover,.fOiFgH:active,.fOiFgH:focus-visible{color:#4e4e4e;color:light-dark(#4e4e4e,#919191)}@media(min-width:768px){.fOiFgH.mobile-only{display:none}}.enjvCw{width:32px}.enjvCw,.enjvCw:focus{color:#25d366;color:light-dark(#25d366,#25d366)}.enjvCw:hover,.enjvCw:active,.enjvCw:focus-visible{color:#1da851;color:light-dark(#1da851,#66e093)}@media(min-width:768px){.enjvCw.mobile-only{display:none}}.jctBRm{width:32px}.jctBRm,.jctBRm:focus{color:#ec1a2e;color:light-dark(#ec1a2e,#ec1a2e)}.jctBRm:hover,.jctBRm:active,.jctBRm:focus-visible{color:#ac2a2c;color:light-dark(#ac2a2c,#f58992)}@media(min-width:768px){.jctBRm.mobile-only{display:none}}.dzqQwN{display:flex;gap:12px}.dFzDMM .sc-17yxc4y-0{display:none}.dFzDMM:hover .sc-17yxc4y-0,.dFzDMM.bookmark-button-saved .sc-17yxc4y-0{display:block}.dFzDMM:hover .sc-17yxc4y-1,.dFzDMM.bookmark-button-saved .sc-17yxc4y-1{display:none}.dFzDMM.bookmark-button-saved .sc-17yxc4y-0{display:block}.dFzDMM.bookmark-button-saved .sc-17yxc4y-1{display:none}.dFzDMM.bookmark-button-saved:hover .sc-17yxc4y-0{display:none}.dFzDMM.bookmark-button-saved:hover .sc-17yxc4y-1{display:block}.lfNyeg{display:inline-block;width:32px;height:32px;color:#337e81;color:light-dark(#337e81,#70a5a7)}.sQzGY{display:flex;flex-direction:row;justify-content:center;gap:12px}.cNueyK{display:flex;position:relative;justify-content:center}@media(min-width:768px){.cNueyK{justify-content:flex-end;padding-top:12px;margin:0}}.dUmHef{display:flex}.sticky .dUmHef{flex-direction:column}.igSthU{overflow:hidden;height:23px;margin-bottom:8px;border-bottom:0;clear:both}@media(min-width:768px){.igSthU{height:25px}}.fvIzys{display:inline-block;flex-shrink:0;margin:0 12px 0 0;font:bold 14px/normal 'Indy Sans','Indy Sans Fallback',sans-serif}.fvIzys::after{content:':'}.knjHva{display:inline-block;margin-right:12px;margin-bottom:4px;color:#222;color:light-dark(#222,#fff);font:normal 14px/1.29 'Indy Sans','Indy Sans Fallback',sans-serif;text-decoration:underline}.knjHva::first-letter {text-transform:capitalize}@media(min-width:1000px){.subscribed .gryCYY{margin-top:-184px}.article-feature:not(.article-feature-video) .subscribed .gryCYY{margin-top:-407px}}.gryCYY>p{margin:16px 0}.article-premium .gryCYY>p{line-height:27px}.gryCYY>h2{font-size:21px}.article-climate .gryCYY>h2{color:#ec1a2e;color:light-dark(#ec1a2e,#ec1a2e)}.article-sgi .gryCYY>h2{color:#ec1a2e;color:light-dark(#ec1a2e,#ec1a2e)}.gryCYY>p:first-child{margin-top:0}.gryCYY span:first-child~p:first-of-type{margin-top:0}.FtcnY{display:flex;position:relative;max-width:100%;min-height:600px;justify-content:center;margin:0 auto;background-color:transparent;clear:both}@media(min-width:1000px){.FtcnY{min-height:450px}}.teads .FtcnY{display:block}.FtcnY [data-mpu]{position:sticky;top:16px}@media(min-width:1000px){.cCcguK{display:none}}.cCcguK[data-mpu1]{min-height:600px}.cCcguK.pb-20{padding-bottom:20px}.dFpFuY{overflow:hidden;width:100%;box-sizing:border-box;margin-bottom:16px}@media(min-width:768px){.dFpFuY{max-width:634px}}@media(min-width:1250px){.dFpFuY{max-width:622px}}.dmMyEN{width:100%;box-sizing:border-box;padding:8px 12px 12px;border-top:8px solid #ec1a2e;border-top:8px solid light-dark(#ec1a2e,#ec1a2e);background-color:#fde8ea;background-color:light-dark(#fde8ea,#66000a)}@media(min-width:768px){.dmMyEN{padding-top:4px;padding-bottom:12px}}.fXvmgM{font:bold 22px/26px 'Indy Serif','Indy Serif Fallback',serif;margin:0 0 12px;text-align:center}@media(min-width:768px){.fXvmgM{font:bold 30px/34px 'Indy Serif','Indy Serif Fallback',serif;letter-spacing:-0.048px;margin-bottom:12px;text-align:left}}.ivTlwT{display:block;margin-bottom:12px}@media(min-width:768px){.ivTlwT{display:none}}.hfMbpT{display:flex;width:100%;box-sizing:border-box;align-items:center;justify-content:center;gap:4px;background-color:#fde8ea;background-color:light-dark(#fde8ea,#66000a);color:#ec1a2e;color:light-dark(#ec1a2e,#ec1a2e)}@media(min-width:768px){.hfMbpT{width:auto;justify-content:flex-start}}.dAuNha{display:block;font:bold 14px/20px 'Indy Sans','Indy Sans Fallback',sans-serif;text-decoration-line:underline;margin-block:0;text-align:center}.jiDyot{display:inline-flex;align-items:center;justify-content:center;gap:4px}.jiDyot:hover .sc-hez36s-5,.jiDyot:hover .sc-a5wy94-0{color:#ac2a2c;color:light-dark(#ac2a2c,#f58992)}.laZbyn{font:normal 16px/20px 'Indy Sans','Indy Sans Fallback',sans-serif}.juUDRT{display:flex;width:100%;flex-direction:column}@media(min-width:768px){.juUDRT{display:flow-root;gap:24px;transition:margin-bottom .3s ease-in-out}}.kRWakq{display:flex;width:100%;flex-direction:column;align-items:center;justify-content:center}@media(min-width:768px){.kRWakq{position:relative;z-index:1;width:212px;flex-shrink:0;justify-content:flex-start;margin-left:24px;float:right}}.eJjJXF{display:none;flex-direction:row;align-items:center;justify-content:center;gap:8px;margin-top:8px}@media(min-width:768px){.eJjJXF{display:flex;margin-top:12px}}.dLfZIO{display:flex;width:100%;align-items:center;justify-content:center;gap:8px;margin-top:8px;margin-bottom:12px}@media(min-width:768px){.dLfZIO{display:none}}@media(min-width:768px){.cqPbFA{order:-1}}.jZSKtc .sc-aja53j-5::after{--fade-from:rgba(253,232,234,0);--fade-mid:rgba(253,232,234,0.5);--fade-to:#fde8ea}@media(min-width:360px){.jZSKtc .sc-aja53j-5 .sc-aja53j-7{display:none}}@supports(color:light-dark(red,red)){.jZSKtc .sc-aja53j-5::after{--fade-from:light-dark(rgba(253,232,234,0),rgba(102,0,10,0))}}@supports(color:light-dark(red,red)){.jZSKtc .sc-aja53j-5::after{--fade-mid:light-dark(rgba(253,232,234,0.5),rgba(102,0,10,0.5))}}@supports(color:light-dark(red,red)){.jZSKtc .sc-aja53j-5::after{--fade-to:light-dark(#fde8ea,#66000a)}}.cKWiEj{margin:0 0 24px;font:normal 16px/20px 'Indy Sans','Indy Sans Fallback',sans-serif}.huxBsk{font:bold 16px/20px 'Indy Sans','Indy Sans Fallback',sans-serif}.jaiOuh{display:flex;min-height:600px;justify-content:center}@media(min-width:1000px){.jaiOuh{min-height:450px}}.jasvOK{min-height:600px}@media(min-width:1000px){.jasvOK{min-height:450px}}.jasvOK.mobile-only{display:block}@media(min-width:1000px){.jasvOK.mobile-only{display:none}}.jasvOK.desktop-only{display:none}@media(min-width:1000px){.jasvOK.desktop-only{display:block;margin-bottom:16px}}.jasvOK.desktop-only+p{margin-top:0}.jasvOK .third-party-ad{position:sticky;top:16px}.bYBoJE{width:100%;flex-grow:1}.bYBoJE .social-share{width:100%;padding-top:10px;padding-bottom:20px}@media(min-width:768px){.bYBoJE .social-share{justify-content:flex-start}}.bYBoJE .social-share.sticky{display:none}@media(min-width:1000px){.bYBoJE .social-share.sticky{display:flex;position:sticky;top:14px;width:34px;flex-direction:column;padding-top:0;margin-top:0;margin-left:-25%}.bYBoJE .social-share.sticky .sc-mgcah7-0{margin:0 0 16px}.article-feature-video .bYBoJE .social-share.sticky{margin-top:0}.article-feature:not(.article-feature-video) .bYBoJE .social-share.sticky{margin-top:35%}}.bYBoJE.sponsored-article img,.bYBoJE.sponsored-article video{width:100%;max-width:602px;height:auto}.bYBoJE.sponsored-article iframe{max-width:602px;max-height:400px}.bYBoJE .under-article-prompt-donations{padding-bottom:8px;margin-top:-3px}.bYBoJE .big-letter{--color:#222;display:flex;position:relative;width:0;height:0;align-items:center;justify-content:center;padding:40px;margin-top:22px;margin-right:12px;border:1px solid var(--color);float:left;font:normal 52px/1 'Indy Serif','Indy Serif Fallback',serif;text-transform:uppercase}.bYBoJE .big-letter:first-child{margin-top:6px}.bYBoJE .big-letter::before{position:absolute;top:0;left:0;width:100%;height:100%;box-sizing:border-box;border:1px solid var(--color);border-radius:50%;content:''}.bYBoJE #taboola-below-article-1{min-height:2350px}@media(min-width:768px){.bYBoJE #taboola-below-article-1{min-height:3370px}}.bYBoJE #taboola-below-article-1-split-num-1{min-height:130px}@media(min-width:768px){.bYBoJE #taboola-below-article-1-split-num-1{min-height:415px}}.bYBoJE .sc-fwko30-0+.sc-1xtsh2b-0{margin-top:-16px}@media(min-width:768px){.bYBoJE{max-width:636px;margin:0}}@media(min-width:1000px){.bYBoJE{max-width:624px;margin:0}.bYBoJE.subscribed{max-width:636px}}@media(max-width:999px){.bYBoJE{padding-right:0}.bYBoJE .under-article-prompt-donations{margin-top:-18px}}.bYBoJE .anchor-nav-header{scroll-margin-top:79px}.bYBoJE .anchor-nav-header a{color:#222;color:light-dark(#222,#fff)}.bYBoJE .anchor-nav-header a:hover{color:#222;color:light-dark(#222,#fff)}@supports(color:light-dark(red,red)){.bYBoJE .big-letter{--color:light-dark(#222,#fff)}}.jYgehE{display:flex;flex-wrap:wrap;justify-content:flex-start;margin-bottom:8px;color:#646464;color:light-dark(#646464,#bdbdbd);font:normal 16px/20px 'Indy Sans','Indy Sans Fallback',sans-serif}@media(min-width:768px){.jYgehE{width:70%;align-items:center;justify-content:flex-start;margin-bottom:0;font:normal 16px/24px 'Indy Sans','Indy Sans Fallback',sans-serif}}@media(min-width:1000px){.jYgehE{width:70%;margin-bottom:0}}.dMNxBE{display:flex;height:20px;margin:0 12px 8px 0}.article-voices .dMNxBE{height:auto}@media(min-width:425px){.article-voices .dMNxBE{height:20px}}.dMNxBE::before{display:inline-block;align-self:center;margin-top:1px;margin-right:12px;content:'\2022';transform:scale(1.5)}.dMNxBE:first-child::before{content:none}@media(min-width:768px){.dMNxBE{height:24px;margin-bottom:0}.dMNxBE::before{margin-top:2px}}.dMNxBE time{display:block}.dMNxBE time::first-letter {text-transform:capitalize}.fqqqQy{display:inline-block;margin:0 12px 8px 0;color:#ec1a2e;color:light-dark(#ec1a2e,#ef4757);font:bold 16px/20px 'Indy Sans','Indy Sans Fallback',sans-serif;letter-spacing:-0.5px}.fqqqQy:hover,.fqqqQy:active{color:#ac2a2c;color:light-dark(#ac2a2c,#f58992)}@media(min-width:768px){.fqqqQy{margin-bottom:0}}.ePBJFt{margin:0 12px 8px -8px}@media(min-width:768px){.ePBJFt{margin-bottom:0}}.oMeFT{margin:0 4px 8px 0}.oMeFT::before{display:inline-block;margin-top:2px;margin-right:12px;color:#646464;color:light-dark(#646464,#bdbdbd);content:'\2022';transform:scale(1.5)}.oMeFT:first-child::before{display:none}@media(min-width:768px){.oMeFT{margin-bottom:0}}.bMRmfY{display:flex;justify-content:flex-start;padding:0;margin:0 0 16px}@media(min-width:768px){.bMRmfY{display:flex;width:30%;align-items:center;justify-content:flex-end;margin:0}}@media(min-width:1000px){.bMRmfY{width:30%}}.dfBarH{padding-top:0;border-top:0;border-bottom:0}@media(min-width:768px){.dfBarH{display:flex;flex-flow:row wrap;padding-bottom:16px}.dfBarH .sc-mzrbq8-0{order:1}.dfBarH .sc-mzrbq8-6{order:2}}@media(min-width:1000px){.dfBarH{flex-direction:row}}.klGymp{padding:16px 12px 12px;text-align:left;font:bold 14px/18px 'Indy Sans','Indy Sans Fallback',sans-serif}@media(min-width:768px){.klGymp{padding:16px 16px 12px}}.article-infact .klGymp{padding:16px 0}@media(min-width:1000px){.klGymp{padding:24px 0 19px}.article-feature .klGymp{max-width:968px;margin:0 auto}}.klGymp a{color:#222;color:light-dark(#222,#fff)}.klGymp a:hover{color:#ac2a2c;color:light-dark(#ac2a2c,#f58992)}.klGymp a:hover::after{color:#222;color:light-dark(#222,#fff)}.klGymp a::after{margin-right:4px;margin-left:4px;content:'>'}.klGymp a:last-child::after{display:none}.gbPKFW{margin:0 0 20px;letter-spacing:0}.drRZfZ{margin:0;color:#646464;color:light-dark(#646464,#bdbdbd);font:normal 16px/20px 'Indy Sans','Indy Sans Fallback',sans-serif}@media(min-width:768px){.drRZfZ{font:normal 18px/22px 'Indy Sans','Indy Sans Fallback',sans-serif}}@media(min-width:1000px){.drRZfZ{font:normal 20px/24px 'Indy Sans','Indy Sans Fallback',sans-serif}}.drRZfZ p{font:inherit}.article-feature .drRZfZ a{font-weight:bold}.hYTnrH{max-width:968px;margin:0 auto;background:#fff;background:light-dark(#fff,#000)}@media(min-width:1000px){.parallax .hYTnrH{max-width:1240px}}.fdtMsm{font:bold 32px/36px 'Indy Serif','Indy Serif Fallback',serif;letter-spacing:-0.0156em}@media(min-width:768px){.fdtMsm{font:bold 44px/48px 'Indy Serif','Indy Serif Fallback',serif;letter-spacing:-0.0113em}}@media(min-width:1000px){.fdtMsm{font:bold 54px/58px 'Indy Serif','Indy Serif Fallback',serif;letter-spacing:-0.0092em}}.kZQexU .sc-qvufca-0{margin:0 12px}@media(min-width:768px){.kZQexU .sc-qvufca-0{max-width:968px;margin-right:16px;margin-left:16px}}@media(min-width:1000px){.kZQexU .sc-qvufca-0{margin-right:auto;margin-left:auto}}.kZQexU .sc-qvufca-2{margin-bottom:16px;color:#222;color:light-dark(#222,#fff)}@media(min-width:768px){.kZQexU .sc-qvufca-2{margin-bottom:18px}}@media(min-width:1000px){.kZQexU .sc-qvufca-2{margin-top:0}}.article-feature .kZQexU .sc-qvufca-2{text-align:center}@media(min-width:1000px){.article-feature .kZQexU .sc-qvufca-2{max-width:968px}}.kZQexU .sc-1cmj4ml-0{margin-bottom:16px}@media(min-width:1000px){.kZQexU .sc-1cmj4ml-0{max-width:968px}}.kZQexU .sc-1cmj4ml-0 p{margin-top:0}@media(min-width:768px){.kZQexU .sc-1cmj4ml-0 p{margin-bottom:16px}}@media(min-width:2560px){.kZQexU .sc-1cmj4ml-0 p{margin-bottom:12px}}@media(min-width:1000px){.kFNaRc .sc-qvufca-1{padding:0 16px}}.fzuCgM{overflow:hidden;height:0;color:transparent}.fmcHss{max-width:100%;margin:0 0 20px}.fmcHss.sticky{position:sticky;top:16px}.hlxBlR{min-height:600px}.hlxBlR #mpu1,.hlxBlR #sidebar1{position:sticky;top:16px}.MxpAk{min-height:250px}.clQXMC{max-width:100%}.eEtnsS{margin:0 0 6px;color:#646464;color:light-dark(#646464,#bdbdbd);font-family:'Indy Sans','Indy Sans Fallback',sans-serif;font-size:15px}.PbXHI{margin:0 0 12px}.hVucHy{height:380px}.pAheK{width:100%;height:51px}.lgmjvx{margin-bottom:16px;border-bottom:1px solid #919191;border-bottom:1px solid light-dark(#919191,#646464)}.gSAEA-d{margin-bottom:16px}.gSAEA-d [role='listitem']{position:relative;margin-bottom:12px;border-bottom:1px solid #d3d3d3;border-bottom:1px solid light-dark(#d3d3d3,#919191)}.gSAEA-d [role='listitem'] .sc-u4n1j-0{display:flex;position:absolute;bottom:16px;left:10px;width:32px;height:32px;align-items:center;justify-content:center;border-radius:50%;background-color:#ec1a2e;background-color:light-dark(#ec1a2e,#ec1a2e)}.gSAEA-d [role='listitem'] .sc-u4n1j-0>svg{width:90%;fill:#fff;fill:light-dark(#fff,#000);stroke:transparent}.gSAEA-d [role='listitem']:first-child{display:block;padding-bottom:0;margin-bottom:12px}.gSAEA-d [role='listitem']:first-child .sc-u4n1j-0{top:-15px;bottom:auto;left:12px}.gSAEA-d [role='listitem']:first-child>*:first-child{display:block;width:100%;height:205px}.gSAEA-d [role='listitem']:first-child>*:last-child{--content-bg:#222;--content-bg-opaque:rgba(34,34,34,0.7);position:absolute;bottom:0;width:100%;padding:28px 12px 12px;background:linear-gradient(to top,var(--content-bg) 70%,var(--content-bg-opaque) 100%) no-repeat;color:#fff;color:light-dark(#fff,#222);font-size:17px;font-weight:bold}.gSAEA-d [role='listitem']:last-child{margin-bottom:0;border-bottom:0 none}@supports(color:light-dark(red,red)){.gSAEA-d [role='listitem']:first-child>*:last-child{--content-bg:light-dark(#222,#222)}}@supports(color:light-dark(red,red)){.gSAEA-d [role='listitem']:first-child>*:last-child{--content-bg-opaque:light-dark(rgba(34,34,34,0.7),rgba(34,34,34,0.7))}}.fgtiQY{min-height:1924px}@media(max-width:767px){.fgtiQY{display:none}}.eqQkhO{width:308px;height:100%;margin-left:auto}.eqQkhO.hidden{display:none}@media(max-width:999px){.eqQkhO{display:none}}.article-liveblog .dzfINj{background-color:#f7f7f7;background-color:light-dark(#f7f7f7,#222)}.jBkNwU{justify-content:center}.cumEve{justify-content:center}@keyframes hqVOOe1548920386{from{transform:translateX(0)}to{transform:translateX(-100%)}}@keyframes bReFEb1548920386{from{transform:translateX(100%)}to{transform:translateX(0)}}
Stay up to date with notifications from The Independent Notifications can be managed in browser preferences.
Not now Yes please
News Health Sickle cell: NHS to investigate racial inequalities for first time Exclusive : Health chiefs hope findings will help to eradicate ‘often unacceptable, substandard’ care
Nadine White Race Correspondent
Thursday 22 September 2022 09:22 BST
Your support helps us to tell the story From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.
At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.
The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.
Your support makes all the difference. Read more Sickle cell patients’ experiences of barriers to treatment and racial inequalities will be investigated by an NHS body next month, The Independent has learned.
The NHS Race and Health Observatory has collaborated with Public Digital, a consultancy group, to lead original research into the experiences of people with sickle cell, including listening to NHS patients’ and carers’ first-hand accounts of acute emergency hospital admissions and managing the condition at home.
Research will focus on a series of interviews and ‘experience mapping’ workshops, the findings of which are anticipated to inform recommendations that will help improve emergency care and treatment pathways.
Sickle cell disease is one of the most common genetic conditions in England, affecting around 15,000 people and mainly occurs in Black people.
“As a priority, we need to discover new measures and treatment plans that can help eradicate the often unacceptable, substandard care people with sickle cell have historically received whilst being unwell and in acute pain,” Dr Habib Naqvi, Director of the NHS Race and Health Observatory, said.
“This is not a new, unknown condition. Sickle cell disease was identified over a hundred years ago, but to date it has been associated with limited resource, innovation, and research.”
This move comes after a parliamentary inquiry into avoidable sickle cell deaths called upon the Observatory to undertake work into sickle cell care in relation to race and ethnicity.
The inquiry published a report, ‘No one’s listening’ , in November 2021, which uncovered the bleak reality of patients grappling with racism in the NHS while attempting to access healthcare.
Only half of healthcare professionals feel they have sufficient tools to manage the long-term damage that sickle cell disease brings, new research from Global Blood Therapeutics found , following extensive studies carried out across 10 countries including the UK, US and Canada.
In June, Amanda Pritchard, chief executive of the NHS in England, acknowledged that more needs to be done to tackle health inequalities across England, having raised concern about the treatment of some people with the condition.
This week, the NHS issued an urgent call for more blood donors of Black heritage as new figures reveal a record 250 donations are now needed every day to treat sickle cell, the fastest growing genetic condition in the UK.
According to the National Institute for Health and Care Excellence (NICE), sickle cell is on the increase in mixed-race families.
Whilst the life-limiting disease causes regular hospitalisation for severe pain bouts, there’s no cure.
The observatory will shortly announce the outcomes of two additional pieces of research around sickle cell disease: one will review how funding is allocated for this illness in comparison to other rare inherited diseases such as Cystic Fibrosis, and the other will be a new research trial to identify how best to manage acute, painful episodes.
John James OBE, Chief Executive, Sickle Cell Society, said: “The Sickle Cell Society looks forward to working with Public Digital and the Observatory to help the NHS address the serious health inequalities affecting the lives of people living with sickle cell disorder and their families.
“This work is long overdue and we hope it will shift the dial positively towards securing real improvements in sickle cell care and outcomes for patients.”
Thank you for registering Please refresh the page or navigate to another page on the site to be automatically logged in Please refresh your browser to be logged in
Join our commenting forum
Join thought-provoking conversations, follow other Independent readers and see their replies
Comments