I got a job on the infectious disease ward initially, but I suppose HIV stood out straight away as being something that was very different.
The majority of our patients are from first generation migrant families or immigrant families. Most of the cases I work with are mother-to-baby transmission. I've worked with two kids who had blood transfusions in eastern Africa and got their HIV that way. I also now see a 15-year-old and a 16-year-old girl who sexually acquired HIV, but other than that it's exclusively mother to baby. The youngest kid I've got now is two-and-a-half months and the oldest is 16.
We try and give them a level of understanding in accordance with their developmental level. It's important not to lie but you don't have to tell the whole truth. A seven-year-old can have an incredibly comprehensive understanding of the fact that they've got fighter cells in their body, that their army isn't very strong and that there are these baddies in their blood; their army's trying to fight the baddies but their army is getting weaker so they have to take the medicine to help their army get stronger. We have a nine-year-old who comes in and says, 'How's my army today?', and we say, 'It's really strong', and he's like, 'Brilliant! How about the baddies?', and we say, 'They're asleep'. I suppose we're hoping we can give them a better comprehension of HIV than the public to help them understand that the stigma is something that's culturally created and that their disease is something in their blood that they're controlling. I don't really know how HIV is discussed in the playground but I wouldn't have thought it was with much compassion and understanding.
The medicines are harder to take than for any other chronic disease, significantly harder. Whenever I do lectures to doctors and nurses they cannot believe the level of adherence that families need to stick to. It's not easy to get kids to take medications. Also there are all sorts of complicated relationships between the mother and the child because of being vertically infected, the Mum may feel guiltly and then all of the normal family dynamics. With kids it's very much based on their developmental level, all children are different but to generalise; toddlers can go through hideous terrible twos and parents may take 45 minutes to get the medications into them. It tastes disgusting as well. Then there are your inquisitive seven and eight-year-olds who don't want to take them because they don't really understand why, to your adolescents who absolutely don't want to do anything they're told will help them because they have classic adolescent invincible tendencies and they don't want to be different from everyone else. So I suppose each developmental stage has a unique potential set of problems.
Someone I worked with recently said jokingly it's quite a good way to reduce the size of your clinics if you talk to people about disclosing to their children because they don't come back for months because they're so terrified. Disclosure's very difficult and some parents really resist it and it can be more of a battle with the parents than it is with the kids. Mums often say to us, 'You can't tell them, they'll tell lots of people', and we reassure them that that hardly ever happens. But that in itself is really tragic because it means they understand that they can't. I only know one case where a young person disclosed her diagnosis to one of their friends at school. Her friend then told her parents and her dad came in furious that his daughter could be in class with someone with HIV. A very sensible headmistress managed to contain it but that could easily have escalated.
It's difficult to say whether parents or children cope better. Kids are often pretty resilient and I think that parents are often shocked and relieved that they don't fall apart over their diagnosis. They get on with it and they cope and survive. In the public perception people are always like, 'You work with children, isn't that sad, it's not their fault.' And on one level that's very nice because people are potentially more sympathetic. On the other hand I think that's an incredibly dangerous thing for people to say because it infers that anyone else has gone out and got it and deserves it.
Added complications
If I was diagnosed with HIV today and I took my medicines properly, I'd hopefully die of old age. For kids, because of problems around adherence and because we don't know as much about how the drugs work in children, there are added complications. I've known children who have died at the age of four or five because they've developed drug resistance and they've run out of treatment regimes due to social problems preventing them taking their medicines properly and in that short space of time they've lost all their options. However many children take their drugs really well and one regimen can last for years.
Many of the families I work with have many, many problems that HIV just compounds. For many families, if they are quite new to the UK, HIV can be incredibly isolating. If your family's infected with HIV and you're potentially going to be sent back to a country where you won't be able to get treatment; that is absolutely huge and is so unsettling. I think having an undetermined immigration status is difficult for lots of families; not being able to get a job, not having your passport, not being able to go home, poverty, poor housing, lack of autonomy, all of those issues and then putting HIV on top of that, I think it makes people very anxious and preoccupied. One of the things we try and do in paediatric HIV is to take away some of those issues so families can at least begin to think about their HIV. We don't want them to have to think about it every single day but if they've got so much else going on, basic poverty stuff, food, water, clothing, schooling, how can you get someone to prioritise a chronic condition? But then you're putting those kids' lives at risk if you can't concentrate on those things and these families aren't superhuman. Often they are amazing, I have families whose lifestyles are so chaotic and somehow in the middle of that they take their medicines at seven in the morning and seven at night, and you just think, 'How do you do that?'. HIV makes every single area of their lives more complicated.
Dispersing families around the country at short notice is really appalling and devastating. Again HIV in children is unique because you've got a multi-generational affect. If the parents are alive they're probably infected, so you've got a complicated medical family and you can't just relocate them in 6 days. It just can't happen. So many of the kids have such complex medical needs that dispersal at short notice is totally inappropriate. It's devastating for families; it's devastating for everyone involved. Parents try to look after their children but if we lose a family if we don't know where they are or what's happening to them we know resistance can build up in that time and then you've significantly reduced that child's prognosis. The other complications are in terms of kids who are on second or third line regimens; outside of the large HIV centres people will not have seen those treatments. The Children's HIV Association of UK and Ireland are setting up networks to try and ensure kids do get better care at centres around the country.
I'm incredibly optimistic. You have to be, HIV has come so far. You see scrawny, rashy, tired, lethargic kids come in, you start them on treatment and within weeks you've got bounding, podgy gorgeous growing children. People often don't believe, they're often quite sceptical of the medications, and then you see this transformation and parents are like, 'The child's got so much energy!', because they've been used to this lethargic sleepy kid and it's exhausting chasing this bounding thing around. The thing I think is difficult is that the treatments are going forward but the stigma isn't moving forward as fast. It isn't just the lay population that stigmatise these families, it's people in child services and doctors as well. Often people are well meaning and think they're doing things in the best interests of the child, but it's often based on false assumptions. You still get your classic, 'This child has HIV, glove up', type thing and this is not the 1980's. You're really not at risk. People get really nervous and blow it out of all proportion. I'm surprised how at every single level people have such poor knowledge.