\n Alex Evans, from Hove, has Prader-Willi syndrome and needs ankle foot orthotics (also known as AFOs) to be able to walk.\n<\/p>\n
\n The 23-year-old had been receiving care at the Royal Sussex County Hospitals orthotics department, in Brighton, until July when the unit unexpectedly closed.\n<\/p>\n
\n The Argus understands the service is being transferred between Trusts, causing delays.\n<\/p>\n
\n Alex regularly needs new AFOs and with his current pair becoming increasingly worn out, his family fear he only has weeks before they will become unusable.\n<\/p>\n
\n Alex with his mum, dad and sister, Scarlet (Image: Kara Evans)\n<\/p>\n
\n His mum, Kara Evans, explained: \u201cAlex has had to have AFOs all his life. He was treated perfectly fine at the Royal Alexandra but as soon as he went into adulthood things seemed to get a little bit dropped in terms of his care.\n<\/p>\n
\n \u201cAlex is quite active, so they get into disrepair quite quickly. I rang in July to ask for an appointment and was told they no longer had that department.\n<\/p>\n
\n \u201cThere was no communication, nothing through letters, text messages or calls to know the department was going to close.\u201d\n<\/p>\n
\n Since finding out the service was unavailable in Brighton, Ms Evans says she has been bounced between the GP and the musculoskeletal unit, describing how no one appears to know what has happened.\n<\/p>\n
\n She said she applied for Alex to be referred to a department in West Sussex, however was declined due to being from out of the area.\n<\/p>\n
\n Alex as a child (Image: Kara Evans)\n<\/p>\n
\n Ms Evans said: “I contacted MSK and they said they don\u2019t have orthotics department in Brighton. They didn\u2019t seem to know what was going on. I was told to go back to the GP and get a referral, for something he’s been treated for all his life.\n<\/p>\n
\n \u00a0“I found out since they doing this with all patients. Imagine the stress that\u2019s going to cause for people to have to go back to GP on a condition they could have had all their life.”\n<\/p>\n
\n During one conversation when trying to contact a relevant department, Ms Evans said she was asked if Alex could fund private healthcare.\n<\/p>\n
\n \u201cI did eventually speak to someone who told me is there an opportunity for Alex to go private. How do you expect him to go private, he\u2019s on PIP, he can\u2019t work. It\u2019s disgusting,” Ms Evans said.\n<\/p>\n
\n \u201cEveryone I have spoken to is in absolute confusion. Nobody seems to have been informed, everyone\u2019s in the dark.\u201d\n<\/p>\n
\n (Image: Kara Evans)\n<\/p>\n
\n Ms Evans highlighted her concerns for both Alex\u2019s mental and physical health if he is unable to get new AFOs and forced to use a wheelchair.\n<\/p>\n
\n An excessive appetite, which can lead to weight gain, is a common symptom of Prader Willi Syndrome, so being active is very important for Alex’s wellbeing.\n<\/p>\n
\n His mum explained how he particularly loves to play snooker, having become a well-loved member at Castle Snooker Club in Hove.\n<\/p>\n
\n Ms Evans said: \u201cAlex needs to be active in order to be healthy, to be off his feet it will be life threatening.\n<\/p>\n
\n \u201cFor his mental health too, he loves his snooker. He has been going for ten years and to take that away from him would be devastating.\u201d\n<\/p>\n
\n (Image: Kara Evans)\n<\/p>\n
\n Alex\u2019s uncle Jon Dixon added: \u201cIt would be a massive shame if, due to pain in his feet and ankles, Alex wasn\u2019t able to play the game he loves. It gives him focus and keeps him active.\n<\/p>\n
\n \u201cHe\u2019s not a bad player either. Gone are the days when I can beat him.\n<\/p>\n
\n \u201cHe\u2019s even played a couple of world champions, not least Judd Trump who he scored points against.\n<\/p>\n
\n \u201cFor a lad with his challenges that\u2019s brilliant. I\u2019m terrified this will be all taken away from him because the NHS has literally just stopped the service, dare I say it, stopped caring.\u201d\n<\/p>\n
\n Ms Evans contacted her local MP Sian Berry about the situation, who subsequently wrote to the Trust and the Integrated Care Board.\n<\/p>\n
\n In a response, seen by The Argus, the Trust revealed that the orthotics department is no longer commissioned through University Hospitals Sussex NHS Foundation Trust and has been transferred to Sussex Community NHS Foundation Trust, working in partnership with Sussex MSK Health.<\/p>\n
It said: “We recognise that the transition of this service has resulted in delays for many of our patients who are awaiting assessment, fitting and follow-up appointments.\n<\/p>\n
\n “We do not underestimate how important it is for our patients to have the appropriate footwear to support their mobility, comfort, and safety, and appreciate the impact this delay has had on you.”\n<\/p>\n
\n NHS University Hospitals Sussex Trust have been contacted for comment.<\/p>\n","protected":false},"excerpt":{"rendered":"Alex Evans, from Hove, has Prader-Willi syndrome and needs ankle foot orthotics (also known as AFOs) to be…\n","protected":false},"author":2,"featured_media":797696,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[43],"tags":[102,2960,56,54,55],"class_list":["post-797695","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-health","tag-healthcare","tag-uk","tag-united-kingdom","tag-unitedkingdom"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/797695","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=797695"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/797695\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/797696"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=797695"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=797695"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=797695"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}