Presentation at the Pakistan Society of Gastroenterology Conference at The Pearl Continental

So here I was, my first ever opportunity to speak at a National Conference and I turn up late! It took longer than expected to get ready, to cross town. and we were too late for our slot. I was reallly sad. I had decided that what I wanted to speak about was the patient experience of Hepatitis c. I had asked Shabana to speak, and althoughtshe was very nervous she agreed. I just think at these conferences its all too easy to forget who it is all about.

The wonderful kind Dr who gave us the opportunity managed to twist and squeeze the programme and got us on later that morning. Yippee! we were off!

I uploaded our slides of shabana's family, so many of whom have Hepatitis C, and we paced the hotel, waiting for our turn.

We stood on the stage, nervous as hell, in from tof Dr's, mainly surgeons as the talks before had been about Liver Transplant, so here we cam ewith something completely different. It went down like a lead ballon. As Shabana began to speak, people spoke to theri neighbours, got out hteir phones, left the room. it was awful. She spoke of how difficult it was to be told she had Hepatitis C, she spoke of her treatmetn in UK, she spoke of what we had learnt in paksitan. Of how so many of her family have Hepatitis C and can't afford the treatment, of how so many of her family have died of Hepatitis C. It was painful to talk about, especially when the audience was uninterested. Perhaps we were speaking to the wrong Dr's. Remeber we had missed our slot! And we were not mentioned in the the programme, so any Dr's who would have been interested could not come. In another conference room a very senior Dr from USA was speaking. So its perhaps understandable. And after wards a man with a son dying of liver disease, who was really distreseed and happy to speak to a nother real person came over, so maybe it was worth it. At the time it was demoralising. I strongly beleive that its the real true life stories from people with hepatitis C that will eventually transform this issue, in UK and Paksitna. There are no words that mean anything as strong as the patients words.

Visiting the slums

All round Islamabad, as in all the other cities in Pakistan, there are numerous areas with slums. The slums are mostly made of fabric, draped and shaped in to homes. ICAN workers kindly took us around one to meet some of their friends. In one way the slum village reminded me of glastonbury, or a peace camp. the main difference being that at Glastonbury or a peace camp people have other homes to go to.

Of course we have all watched tv shows with slums on them. But what the tv show can't tell us is the smell. In the street between the tents a stream of sewage ran, with shit floating or piling up.

the other thing you never see on tv is the pride that people take in their homes, however simple. Or the friendlines, or the endless cups of chai I was offered. One of the families we visited had lots of pets, including a rabbit and a green parrot!

In one of the homes there had just been a wedding. The lucky couple had the room decorated, it looked really beautiful. the young woman shyly showed us a few phots of her happy day. here is aphot of me and the lovely family with Carol from ICAN. The decorated bed is in the background.

Beautiful eh!

After spending time with the drug users and in the slums I was really knocked sideways. I think i've seen q bit of the world but I had never seen poverty like I saw today. Here we are in the 21st Century, I live in a land where each home has a couple of cars, where we rip out our kitchesns to fit the newest colours, where we all try to live like footballers wives, and here there are, lovely kind funny friendly people living in such poverty. It breaks my heart.

Visiting heroin users in Rawalapindhi

ICAN they took me and Shabana out to meet some of the local heroin users. We went to one of the spots where they use drugs, and visited one of the spots where they live.

In Rawalaphindhi the most common way of taking heroin is smoking not injecting. Apparently in Karachi and Lahore, much bigger cities that Rawalapindhi, there are more heroin injectors. But here the common method is much safer regards transmission of Hepatitis C. The heroin users live and take drugs in the most unimaginable filth. The smell was undescribable. The area they were living was under a stream of sewage and rubbish, living on layers and layers of rubbish. Here are some photos...you can't see much in the first one, then I zoomed in. If you look carefully in the dark you can see a blanket where somebody is sleeping.
Here's a photo of me and a few of the other workers standing on the tiny bridge over the open sewer/stream :

One of the lads we met was really upset. he had been beaten up by the police the night before:

They were a friendly bunch of young lads, and reminede me of lads from england. I think they quite enjoyed the attention!

Hepatitis C prevention with ICAN

ICAN are a small Chrisitan NGO that work with drug users and help them with rehabilitation. They have a residential communtiy where clietns can have a detox, and spend time learning hwo to live without drugs. When we visited them they were without premises, and were only able to do the minimum amount of work. they are hoping to move into a bigger building soon so that they can admit people and help them come off drugs.

Shaban and I spoke to them about Hepatitis C. they had not heard much about it, having concentrated all their efforts on HIV. They had never worked with a client with HIV. We gave the group of staff our Health Promotion Presentation, and found out that a few of the staff had Hep C or had family members with it. so much for all the work with HIV! As I discussed with them, by concentrating on Helatah Education about HIV they are missing an opportunity. The disease has different routes of transmission. Unlike HIV Hepatitis C is rearely spread by sex. Instead it is almost soley spread by blood. But unlike HIV it lives for along time outside the body, and terefore can be spread by every bit of kit that is used when people inject drugs. its not just needles, it can be spread by filters, spoons, water. Also as so few people in Pakistan have HIV the Hepath Promotion message means notheing. But Hepatitis C is rife. By concentrating on Hepatitis C prevention perhaps people will change their behaviour, because everybody knoows somebody with it.