I want to be like the others - Waverley Care

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I want to be like the others2001 0% 100% 0% 142002 0% 100% 0% 212003 0% 93% 7% 142004 0% 93% 7% 272005 0% 100% 0% 312006 0% 100% 0% 352007 0% 74% 26% 422008 0% 61% 39% 36*11% died, lost to follow up or known to have gone abroad before their infectionstatus was established** only 8 children in total(Source: NSHPC data, UCL Institute of Child Health, Data to end 2008.)Paediatric clinicians working with infected children in Scotland suggest that the totalnumber of infected children in Scotland is neither 35 nor 43, but 47 (Draft Proposalfor Managed Clinical Network in Paediatric Immune Deficiency, 2009). 12 Thisdiscrepancy is, in part, explained simply: paediatric services include children up tothe age of 18 years, whereas HPS only counts those up to 15 years of age. Butanother complicating factor in predicting numbers accurately is that there is a windowof uncertainty in establishing whether children are infected, and in many cases,maternal HIV infection is only recognised when the child becomes ill. There may alsobe a delay or failure to report HIV-infected children by paediatricians to either HPS orNSHPC. Hence the data regarding the number of infected children may not reflectthe true proportion of births to HIV infected mothers which result in the child beinginfected. 13It is informative to place these figures in the national and local picture of HIV infectionacross Scotland. As previously stated, statistics demonstrate that there has been asignificant rise in the number of people receiving treatment for HIV in Scotland (HPS,2007; Scottish Government, 2009). This rise is not evenly spread across Scotland,12 This information was presented to the second meeting of the Scottish Paediatric HIV Groupheld in Perth (Scotland) on 5 th May, 2009.13 The ‘window of uncertainty’ used to be 18 months, but with the use of more sensitive tests,a diagnosis of HIV infection in a child can be made with a certainty of about 95% by 6 monthsof age. There should rarely be a ‘window of uncertainty’ of 18 months unless inappropriatetests have been done or the child continues to be exposed to risks, for example, is breast-fed.(Information supplied by Dr Mok, NHS Lothian).25
I want to be like the othershowever, with some areas experiencing significantly more pressure than others. 14Table 3.4 shows this graphically:Table 3.4: CD4 Monitoring & treatment by NHS Board, 2007NHS Board Total attendees Attending for first time in 2007Ayrshire & Annan 31 2Borders 2 0Dumfries & Galloway 37 7Fife 69 8Forth Valley 43 3Grampian 202 45Greater Glasgow & Clyde 891 160Highland 35 7Lanarkshire 103 21Lothian 1,066 120Orkney 0 0Shetland 0 0Tayside 195 25Western Isles 0 0Scotland 2,674 398(Source: HPS figures reported in Johnman, 2009: 38.)3.2.3 DiscussionAvailable information would seem to suggest that the number of infected children inScotland overall is relatively small: either 35, 43 or 47, depending on the questionthat is asked, and the ways that data are collected. But the low numbers should notdeceive us into thinking that the problems which these children face are also small.The scoping study has already demonstrated that children with HIV face very realproblems, both physically and psycho-socially, and these will be further reflected inthe findings from the qualitative component in our research.The data also highlight differences across Scotland as well as the sharp divide in thenumbers, expectations and prognosis for children born inside and outside the UK.HPS figures suggest that 24 of the 35 children under the age of 15 who are infectedwith HIV are black African children. This is a highly significant fact in its own right.Over and above this, it is known from ‘whole Scotland’ figures (Table 3.4) that HealthBoards experience uneven demands on their services. Although the cross-sectorneeds assessment was not set up to look specifically at needs on the basis of14It is known that some patients travel across NHS Boards to receive HIV treatment andcare. This is particularly the case in NHS Greater Glasgow and Clyde and NHS Lothian healthboard areas (see Johnman, 2009: 38).2626
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