I want to be like the others - Waverley Care

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I want to be like the othersdraft for stakeholders’ review (Johnman, 2009) and patients’ views have alreadybeen sought and published (Health Scotland, 2009).The draft review is extremely informative, as are the views of the patient scrutinypanel. Section 3.5 is devoted to children living with HIV (that is, infected with HIV) inScotland. It suggests that the treatment and care of children living with HIV isextremely complex and needs to reflect the involvement of the whole family (2009:85). Further, it argues that management of HIV may be complicated by concurrentinfection in family members including parents and siblings, and as children survivelonger, planning transition to adult clinics is an important issue which will place newdemands on services. The review highlights stigma as a real issue for young people,and suggests that young people must be:’(1) well educated about their condition andits treatment; (2) confident in their ability to talk about HIV with those who they wantto know about their condition; (3) have a support system, so they know where to gethelp and advice when they need it.’ (2009: 86). The review acknowledges the keyrole played by the voluntary sector in HIV in Scotland, whilst also observing thataccess to support provided by the voluntary sector to people living with HIV variesthroughout Scotland, as do levels of collaboration between NHS services and thevoluntary sector. Amongst its 24 recommendations, the following have particularrelevance to children and young people infected and affected by HIV:20. Paediatric services should have access to appropriately skilled personnel toprovide a multidisciplinary service and appropriate support for children, youngpeople and their families, affected by HIV.21. Protocols should be developed to ensure smooth transition of children to adultservices (in keeping with CHIVA guidelines).22. Support for voluntary and community sector provision and cross-sectoralcollaboration with Local Authorities, should be part of the provision made atnational and health board level to ensure that the social and psychologicalneeds of people living with HIV are met.23. There should be improved collaboration between NHS staff and the voluntarysector.24. All People living with HIV should have access, both directly and via HIVtreatment and care services, to voluntary sector provision.The scrutiny panel members, all of whom are individuals living with HIV, begin theirreport with a challenge to the notion that HIV is regarded as a ‘manageable1919
I want to be like the otherscondition’, either by health service staff or by the general public. They stress theimpact of stigma, and call for trained counsellors (from health or social work) to beavailable to help parents who wish to disclose their HIV status to their children, or tellthe child that s/he has HIV. They draw attention to the need for support services foraffected children and for African families living with HIV. The panel members alsogive substance to the call for better transition services, by drawing attention to thefact that children with HIV have to move from the familiar setting of a children’shospital to the GUM clinic: a very different (‘daunting’) experience. The panelmembers highlight the contribution of Waverley Care in providing the only dedicatedchildren and families’ HIV service in Scotland. 6Disappointingly, the considerable attention given to children and young people in thisneeds assessment is not reflected in either of the early drafts of the government’s‘Action Plan for HIV from 2009 to 2011’. The main proposal of the first draft,published in February 2009 (Scottish Government, 2009a), is to establish threeManaged Prevention and Care Networks (MPCN) in Scotland, with a focus onprevention of HIV transmission; the role of care and treatment services is given asfollows: ‘to contribute to a reduction in the transmission of HIV and longer survivalrates for those living with HIV’. There is no mention of children or young people inthis draft. A final draft, published in August 2009 (Scottish Government, 2009b)retains the emphasis on prevention, but now mentions ‘young people’ twice. Firstly, itis stated that MPCNs ‘will access the support of statutory and voluntary organisationsas appropriate and will facilitate multiagency and professional disciplinary working atlocal, regional and national levels: for example, through supporting a national“network” of individuals involved in the care of infected young people’ (2009: 10).Secondly, in a discussion of the importance of ‘education and HIV awarenessraising’,it is stated that ‘Young people, particularly those at risk of HIV infection, suchas young MSM [men who have sex with men], also need to be informed and updatedon risks associated with HIV transmission’ (2009: 14). It is to be hoped that the finalversion of the HIV Action Plan (currently awaited) might refer more strongly to theneeds of children and young people.Much of the inspiration for the plan seems to derive from an earlier policy initiativeintroduced by Scottish Executive in 2005. ‘Respect and Responsibility: Strategy and6 As will be discussed later in the report, HIV-AIDS Carers & Family Service Provider,Scotland also provides support to families and Positive Help offers a befriending service tochildren in Edinburgh.2020
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I want to be like the others - Waverley Care

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