{"id":402523,"date":"2010-03-08T06:21:50","date_gmt":"2010-03-08T11:21:50","guid":{"rendered":"http:\/\/careandsupport.direct.gov.uk\/?p=3099"},"modified":"2010-03-08T06:21:50","modified_gmt":"2010-03-08T11:21:50","slug":"information-and-advice-teresa-brett","status":"publish","type":"post","link":"https:\/\/mereja.media\/index\/402523","title":{"rendered":"Information and Advice: Teresa Brett"},"content":{"rendered":"

\"Teresa+Robin-Brett-SMALL2\"<\/a><\/strong><\/p>\n

Teresa and her husband care for their son Robin, who has a rare health disorder and learning disabilities. Teresa found it difficult to find information and advice to help Robin, so she has set up an organisation with other parents to help them get the support they need.<\/strong><\/p>\n

Teresa Brett lives in Swindon with her husband and one of her two sons, Robin. Robin has health problems and an undiagnosed learning disability. Their other son David, who is severely dyslexic and receiving Disability Living Allowance himself, also spends a lot of time at home as he helps to care for Robin.<\/p>\n

Robin is 14 and attends a special school 16 miles away in Wantage, the closest they could find. He enjoys trips out with his family at the weekend, especially riding on buses, and he goes to an after school club every weekday.<\/p>\n

\u201cHe loves the\u00a0club with the other children.\u00a0 He loves making people laugh and if any of the other children are a bit shy, he encourages them.\u00a0 He\u2019s a born leader,\u201d says Teresa.<\/p>\n

Teresa has always found it a struggle to get information and advice to help her and her family care for Robin. It took\u00a0a long time to find out about the financial support they were entitled to, and in many cases they have come across information by word of mouth, or by chance. For example they only learned about Disability Living Allowance from Swindon Portage, a specialist pre-school teaching service.<\/p>\n

\u201cOn one occasion, while I was at the Sadler Unit in Swindon, a paediatric medical assessment unit, I found a copy of a newsletter produced by CLIMB (Children Living with Inherited Metabolic Diseases) lying about, with my son\u2019s condition listed on the back. I didn\u2019t know there was a support group, and he was well over two by then. I could have really done with that support group from the word go,\u201d says Teresa.<\/p>\n

When Teresa found out about the local Learning Disabilities Community Nurse, it made a big difference.\u00a0 He has trained Teresa in\u00a0giving Robin vital injections in an emergency, and helps with Robin\u2019s other health issues. He provides support on managing Robin\u2019s learning disability and points\u00a0Teresa and her family\u00a0to additional support and information.<\/p>\n

\u201cWe see him every month, or every other month.\u00a0 If I want to know something and can\u2019t find out myself I often ask him,\u201d says Teresa.\u00a0 \u201cHe covers a whole spectrum of things.\u00a0 They\u2019re a great source of information.\u201d<\/p>\n

Teresa felt that although there were organisations to support people with recognised disorders, there was nothing for people like Robin whose learning disability is undiagnosed.\u00a0 So together with other local parents, they set up Swindon Children Without a Diagnosis (SCWAD), and share information and help support other parents who are in similar situations.<\/p>\n

\u201cWe\u2019ve got all kinds of people in SCWAD and some of those parents have got learning problems themselves.\u00a0 We\u2019re there to support everybody at whatever level they need it really. We can all do a little bit to help each other,\u201d says Teresa.<\/p>\n

Teresa is aware that they will soon need to start planning for Robin\u2019s future after he leaves school.\u00a0 She has started attending meetings of the local parent advisory group, which provides information about the process of transition from children\u2019s services to adult services.\u00a0<\/p>\n

She also has annual review meetings, which involve professionals from a range of different services, including social care, education, and health, to help plan for his needs. Teresa knows that planning for the future will be one of the big challenges for the next few years.<\/p>\n

\u201cWe don\u2019t know what is going to happen when he leaves school, but he needs structure, he needs a social life. We can\u2019t make uninformed decisions, it\u2019s just getting the information.\u00a0 That\u2019s what we\u2019re trying to do.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

Teresa and her husband care for their son Robin, who has a rare health disorder and learning disabilities. Teresa found it difficult to find information and advice to help Robin, so she has set up an organisation with other parents to help them get the support they need. Teresa Brett lives in Swindon with her […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-402523","post","type-post","status-publish","format-standard","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/mereja.media\/index\/wp-json\/wp\/v2\/posts\/402523","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/mereja.media\/index\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/mereja.media\/index\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/mereja.media\/index\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/mereja.media\/index\/wp-json\/wp\/v2\/comments?post=402523"}],"version-history":[{"count":0,"href":"https:\/\/mereja.media\/index\/wp-json\/wp\/v2\/posts\/402523\/revisions"}],"wp:attachment":[{"href":"https:\/\/mereja.media\/index\/wp-json\/wp\/v2\/media?parent=402523"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/mereja.media\/index\/wp-json\/wp\/v2\/categories?post=402523"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/mereja.media\/index\/wp-json\/wp\/v2\/tags?post=402523"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}