Our work began over ten years ago as part of the charity ‘Grandma’s’. An east London branch was established in response to the needs of a large number of families with HIV who lived in the area. In 2009, we took on a separate charitable identity under our new name – ‘Alongside You’. The local presence, along with our dedicated volunteer base, enable us to work more effectively with churches in the area. This, in turn, allowed us to recruit more volunteers and reach even more families in need.
The quality of life of families living with HIV continues to improve with improved medication and prognosis. Antenatal testing and interventions in pregnancy and childbirth result in a less than 1% chance of passing HIV to children. However while only 9% of the children on our books are HIV+ themselves, our families still need support from us as the stigma continues to isolate people.
Every family is different and requires different support from us. In the beginning, families who are referred to us are normally at the epicenter of crisis. Mothers frequently find out they are HIV+ when pregnant through antenatal testing; coming to terms with the diagnosis is often accompanied by a period of depression. Fathers are often referred to us following the death of their wife. A high proportion of our referrals are from families with unresolved asylum cases- some coming from very traumatic situations to live in a new country with little community support.
Over time as we work with them and they become accustomed to their new life and/or diagnosis, their needs evolve and change over time. Regardless of medication, a HIV+ diagnosis does have an impact on health and our families are more likely to suffer from complex health needs such as strokes, kidney or liver failure, HIV dementia or cancer. Due to these health problems, some of our parents have reduced capacity to care for their children so they rely on our support more than before. Families also need our support when telling the children about HIV- whether it be the child’s own diagnosis or the parent’s.
Through our outings service, we are able to provide respite for children who become carers for their parents, for children who have lost a parent, for children who have just found out about their diagnosis and its implications for their life. We are also able to provide respite for parents who find it hard to juggle household chores, childcare and getting the proper amount of rest they need.
Our service wouldn’t be possible without our volunteers and we are so grateful to each and every one of them who give up their time to help us reach out and come alongside the families who are struggling in east London.