{"id":116,"date":"2022-10-25T11:31:00","date_gmt":"2022-10-25T10:31:00","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=116"},"modified":"2023-04-20T09:50:22","modified_gmt":"2023-04-20T08:50:22","slug":"feeling-like-my-family-has-been-forgotten-has-been-the-worst-part-of-the-pandemic","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/feeling-like-my-family-has-been-forgotten-has-been-the-worst-part-of-the-pandemic\/","title":{"rendered":"I\u2019m campaigning so that families like mine aren\u2019t forgotten"},"content":{"rendered":"\n

Claire lives in Cambridgeshire and cares for her son, Hugo. She shares her story and why she believes it\u2019s important that disabled people are represented in the Covid-19 inquiry.  <\/p>\n\n\n\n

For some people, thinking back to where we all were two years ago is going to be hard. I understand the desire to move on, but actually for families with disabled people, the worry and isolation of the Covid lockdowns has lingered on. <\/p>\n\n\n\n

The impact of the pandemic has been particularly severe for families like mine. There was so much support that we didn\u2019t get. That\u2019s why the Covid inquiry is so important. It has the potential to recognise how people suffered as they tried to do the right thing and protect themselves. <\/p>\n\n\n\n

\"Hugo
Claire and her son, Hugo.<\/figcaption><\/figure>\n\n\n\n

We felt left behind and cut off during lockdown<\/h2>\n\n\n\n

My son, Hugo, has\u202fCHARGE syndrome<\/strong><\/a>, a\u202frare genetic disorder that affects many different parts of the body.\u202fIt\u2019s incredibly complex and affects everyone differently.\u202fHugo has severe hearing loss\u202fand\u202fsignificant visual impairment, as well as other serious health conditions.\u202f\u202f\u00a0<\/p>\n\n\n\n

We\u2019ve been incredibly lucky\u202fover the years\u202fto be connected with different\u202fsupport groups and\u202fother\u202ffamilies\u202fwith disabled children.\u202fThis has been a real lifeline for us,\u202fbut\u202fwhen this disappeared in the pandemic,\u202fit was a real shock.\u202f\u00a0And even now 18 months later we still\u202fdon\u2019t have the same support and help.\u202f\u00a0<\/p>\n\n\n\n

Overnight, all of Hugo\u2019s usual care that we get at home\u202fstopped. We were left with no support.\u202fIt suddenly felt like a huge gap in our lives that we were left to fill on our own.\u202f\u00a0\u00a0<\/p>\n\n\n\n

One of the biggest issues we had early one was getting hold of PPE equipment. We weren\u2019t given any, we couldn\u2019t source it ourselves. As a family of six isolating in one house, we needed that extra level of protection for Hugo. <\/p>\n\n\n\n

The consequences of the pandemic\u00a0are ongoing\u00a0<\/h2>\n\n\n\n

Through Sense\u2019s campaign to put disabled families at the heart of the Covid Inquiry, we were given a voice. Having a chance to share our experiences was important to me. I wanted to be part of the effort to get us included in conversations about how the Inquiry would pan out.\u00a0<\/p>\n\n\n\n

\"6
Disability campaigners and the charity Sense in Westminster to deliver a petition of over 38K signatures, calling for disabled people to be heard at the Covid Inquiry.<\/figcaption><\/figure>\n\n\n\n

Hugo and I went in for the petition hand-in at Downing Street<\/a>, which was a great moment to be part of. But I don\u2019t feel our work is done.\u00a0<\/p>\n\n\n\n

Disabled people still aren\u2019t able to fully relax. Many of us are looking over our shoulder, scared that Covid will enter our homes. And now that means paying for tests \u2013 people can\u2019t afford to be testing 3-4 times a week, they can\u2019t afford to meet their safety needs.\u00a0<\/p>\n\n\n\n

Our experiences should not be overlooked<\/h2>\n\n\n\n

We don\u2019t feel like we can return to normality like so many others. I know a lot of people found the lockdown hard, but the reality is that when you look after someone with disabilities you actually are isolated quite a lot of the time.  <\/p>\n\n\n\n

Whether it\u2019s quarantining before\/after hospital appointments, or just providing full time care to someone who\u2019s quite unwell \u2013 we\u2019re often cut off. <\/p>\n\n\n\n

Many families and individuals are still scared and suffering out there.\u202fIt\u2019s really important that the Covid inquiry is run by a panel that includes\u202fdisabled\u202fpeople so that our experiences won\u2019t be overlooked again.\u202f <\/p>\n\n\n\n

\n
\n
\n
\n\n

Add your name to the petition<\/h2>\n\n\n\n

Join Sense and sign our petition calling for disabled people and their families to be at the heart of the public inquiry into Covid-19. <\/p>\n\n<\/div>\n <\/div>\n\n

\n Sign the petition<\/a>\n <\/div>\n <\/div>\n\n <\/div>\n\n","protected":false},"excerpt":{"rendered":"

Claire lives in Cambridgeshire and cares for her son, Hugo.\u00a0She shares her story and why she believes it\u2019s important that disabled people are represented in the Covid-19 inquiry.\u00a0\u00a0<\/p>\n","protected":false},"author":15,"featured_media":117,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[82],"display_author":[81],"class_list":["post-116","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","tag-covid-19","display_author-claire"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/116","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/15"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=116"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/116\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media\/117"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=116"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=116"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=116"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=116"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}