Annual Review 2012 - DebRA

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Making the differenceEB Community CareDEBRA needs £600,300 in 2013 to provide ourEB Community Care serviceIn <strong>2012</strong> DEBRA extended a comprehensive EBCommunity Care service to Scotland andexpanded provision in the south of England as adirect result of your support and savingsachieved through the new NHS nursing careprovision. We also strengthened our MembershipTeam, with the aim of communicating moreeffectively and directly with people living with EB.We aim to ensure that the views of the EBCommunity are heard and their needs remain atthe heart of everything we do.Our five regionally-based EB Community CareManagers are specialists in their area of EB.They are available to provide support to familieswhen a new diagnosis of EB is made, then to theindividuals and their families as they movethrough education and into the workplace. Theyhelp people deal with the many practical andemotional effects of having EB.“Just speaking to one of the EB CommunityCare managers can be rewarding,motivating and supportive. You will nolonger feel totally alone and if there is away they can help you then you can restassured they will do their best to do so.DEBRA is a cracking organisation andbunch of people working so hard forpeople with EB and driving research.I’d like to use this opportunity to say apublic THANK YOU to them.”Nick Bailey, EB SimplexBy funding the DEBRA EB Community CareTeam today you will:• Provide special days/breaks for children/adults where groups of people with EB canmeet, share experiences and take part inactivities that people without EB take forgranted. These trips give parents and carers awell deserved break and boosts theconfidence of children and adults alike.• Unlock the ability for people to liveindependently by helping adults to accessavailable support such as employmentopportunities, housing through local councils,home adaptations, and even grants whichenable people learn to drive specially adaptedvehicles etc.• Open doors to education and job prospectsthrough the provision of advocacy to accessappropriate schools, or help young peopleapply to university and colleges. DEBRA EBCommunity Care Managers also work withchosen educational institutions to raiseawareness of EB and where required makeadaptations and organise support so thatchildren and young adults with EB can get themost from their education.• Alleviate the stress and burden that moneyworries cause families and individualswith EB. ‘DEBRA Support Grants’ can bemade available to help to adults, young peopleand children in unexpected need and direhardship. Usually one-off payments, thesemight be for hospital travel costs, heating billsand vital equipment such as heavy loadwashing machines and cooling fans.• Ensure DEBRA’s holiday homes continueto provide a safe place for families and peopleto take a break. The four holiday homeslocated in Scotland, Weymouth and most therecent addition in Poole, often provide the onlyholiday a family can take. They are incrediblypopular and at almost full occupancy. We mustclose the one in Scotland in 2013 as it hascome to the end of its useful life, but if fundingis forthcoming we aim to replace it.• Provide emergency hospital packs whichconsist of everyday items a person with EBmight need when they find themselvesunexpectedly back in hospital. Items such asspecial toothbrushes, toothpaste, soft foods, orsuitable night clothes are provided.* Name changed to protect identity10
One of DEBRA’s holiday homes in WeymouthThe interior of DEBRA’s holiday homesAccessing educationOne of the DEBRA EB Community CareManagers met Katie* at a DEBRA MembersDay/AGM. Katie is a 24 year old woman who isliving with Recessive Dystrophic EB. Having leftschool some years ago Katie was keen to studyon a course which would give her a qualificationto enable her to work with children. When sheenquired about this, she was advised thatbecause of her condition, a career working withchildren may not be suitable. As a result of thisadvice she gave up her ambitions to study andmostly spent her time at home.The DEBRA EB Community Care Manager tookthe time to learn about Katie’s interests andambitions and understand the advice she hadbeen given. A date was arranged for the EBCommunity Care Manager to meet with Katie andher family. After visiting twice at home and havinga number of more detailed conversations withKatie, the EB Community Care Manager was ableto help identify what support Katie required fromDEBRA.Advice about educationKatie needed advice and information abouteducation and the support available for peoplewith disabilities. There is new legislation: ‘TheEquality Act’ which states that people withdisabilities are a protected group and thatorganisations must have systems in place tosupport them.AdvocacyKatie needed help to find the right place to studyand supportive documentation to achieve aplace. The EB Community Care Manager assistedKatie to search through the web sites of localcolleges and universities so that she could makea decision about which course she wanted to do.It was important to consider the level of supportshe might need.Once Katie had decided which college courseshe wanted to study, she completed anapplication form and asked the EB CommunityCare Manager to contact the college to advocateon her behalf. A reference was provided and sentto the college in support of Katie’s application.OutcomeKatie was invited to attend an open day and foran interview. The EB Community Care Managerdiscussed the possible interview questions,and also planned the questions Katie could ask.Ultimately, Katie accepted a place at herchosen college.*Name changed to protect anonymity11
Page 1 and 2: for people whoseskin doesn’t work
Page 3 and 4: What is Epidermolysis Bullosa?Epide
Page 5 and 6: DEBRA UK is seeking funding for the
Page 7 and 8: International Support - IndiaAs wel
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Page 13 and 14: Case StudyAmy’s Story"EB affects
Page 16 and 17: Treasurer’s ReportNet IncomingRes
Page 18 and 19: Trusts and FoundationsOur gratitude
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Annual Review 2012 - DebRA

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