We are the Regional Paediatric HIV Unit for the West Midlands, and we take this responsibility seriously. The Paediatric HIV team supports over 100 HIV Positive children living in the West Midlands Region, ages ranging from1to 19 years old. The majority of our children take daily medication which controls the progression of their HIV and allows them to lead full and healthy lives. The team provides specialist advice and support to our children and their families to help them cope with the many issues that can arise when living with HIV. We also support HIV Positive women and their babies throughout the 2 year period that testing for HIV takes place.
There are currently around 1200 children in the UK who are infected with HIV. Their average age is 11, and all are part of several national networks to which we contribute key and confidential data. These include the National Study of HIV in Pregnancy and Childhood and the Collaborative HIV Paediatric Study. Data related to the children is updated annually by the Children’s HIV Association, making epidemiological information about paediatric HIV highly accurate and useful to service design and provision.
The population of children with HIV in the UKis relatively stable and expected to remain that way. The vast majority of children are infected via mother-to-child transmission – and that’s why identifying HIV during pregnancy is so important. The likelihood of survival into adult life, however, is now very high, and though prevalence in the various regions of the UK is highly variable, support groups exist to ensure emotional well-being.
Our separate paediatric HIV service is family-centred and built entirely around the needs of children with HIV, operating along the relevant guidelines and standards. Our paediatric service offers the same breadth, depth and quality of care as our adult service: we provide both inpatient and outpatient facilities, emphasise psychological as well as physiological support, and education families about the full range of social and financial entitlements available.
Our highly qualified teams act in full consultation with the family, prescribing ARVs where necessary and empowering the child through a defined, staged process to take ownership of their condition once they are of an appropriate age to do so. We follow nationally-agreed patient pathways, placing all children young than one year of age on ARV therapy in order to prevent rapid disease progression; likewise, we regularly screen for complication and co-morbidities, monitoring and managing these as part of routine care. Annual reviews are very much part of this constant conversation about the best treatment strategies and techniques.
As in our adult service, all our practitioners are highly qualified specialists, and our multidisciplinary team consists of paediatricians, specialist nurses, pharmacists, psychologists, physiotherapists, occupational therapists, play specialists, social workers and dietitians. We focus on helping children and families understand their condition and how to maintain adherence to defined treatment plans. We take advantage of the latest technology – for instance in the field of virtual clinics – in order to keep in touch 24/7 with children and families, and ensure adherence and resistance issues are treated properly and rapidly.
We cultivate excellent relationships with all relevant services and specialisms, including your GP and other primary care practitioners, as well as charity and other third sector partners, in order to offer as comprehensive a service as possible. We also engage in wide-ranging health promotion in the wider community, encouraging testing and combating stigma.