I had been contemplating going to a worlds AIDS conference for a few years, but when I found out that the 2002 bash was going to be in Barcelona, I decided that it was time I pulled my finger out and try to go. How I was going to afford it was another question, but after making enquiries I discovered that it was possible to get a scholarship to attend and that gave me the final push I needed to go ahead and apply. I dutifully downloaded the application form from the website (www.aids2000.com), filled it in and waited to see if I was going to be successful or not. It was obvious from the application form that they were not handing out free trips to Barcelona "willy-nilly" (and also that they expected it to be well over-subscribed), so I didn't really expect my application to get past the first stage.

The Fira Conference Centre in Plaza d'Espana, Barcelona

A couple of months later I received an email from Barcelona telling me that I had been successful, and that I had been awarded a "partial" scholarship. This meant that they would meet the cost of attending the conference and would provide me with accommodation, but NOT the means of getting there or providing me with any kind of sustenance. Subsequently I set about finding assistance and, with the help of Chris Woolls, we received a donation from Roche Pharmaceuticals of £100. Clearly this wasn't going to be enough so Staffordshire Buddies stepped in to make up the shortfall from a designated fund of money supplied by the North Staffs Health Authority specifically for assisting service users for this kind of personal development. So flights were booked, confirmation was sent to Barcelona and all I had to do was wait to receive my "delegates pack" as to where I was staying and exactly what was on offer at the conference. And wait I did. Nothing arrived. I emailed them (several times) asking for my pack or a least details of my accommodation, but nothing. No response. I checked through my initial confirmation email which said "If you have received support for Travel and/or Accommodation, this is at present being organized by the Scholarship Unit team. You do not have to do anything as everything will be done for you from the Secretariat in Barcelona." So, even though I had still not received any paperwork from them by my departure day, I set off for sunny Spain at 6.30am on 6th July.

Saturday ... a day of surprises
To minimise the cost to Staffordshire Buddies I had booked my flight with Easyjet, which left half an hour late from Liverpool John Lennon Airport, and duly arrived in Barcelona Airport on time (thanks to good tail winds) at 12noon. I reclaimed my bags and headed to the exit when I noticed a booth bearing the conference logo and the word "Accommodation". With typical British style I joined the (lengthy) queue and after about 15 minutes, noticed that everyone else in the queue was carrying a fax with Hotel accommodation details. Undeterred, I waited for my turn, showed the assistant all the (brief) correspondence I had to which she replied, "Oh, you need to go to the Conference Centre as you have a Scholarship. They will have all your details there, you're not on my list".
So I set off on the Airport bus to the conference centre where I headed for the "Conference Registration" desk. I was then sent on a paper-chase of check-in desks until finally, after 45 minutes and visiting the 5th desk, I ended up back at the first desk I had gone to! I finally registered (through gritted teeth) and then went to the "Scholarship" desk where I was told that I would be staying at the University Halls of Residence.

One of the conference's Internet cafes

Now, those of you who know Barcelona will know that there is a University almost in the centre of the city, two minutes from the conference centre. What you may not know (like me) is that they have Halls of Residence that are about 45mins away by Metro (with a change of train half way though.) To my surprise, this was to be where I would be staying. So, with my directions scribbled on a post-it note, I headed for the Metro and, what seemed like hundreds of underground steps and two trains later, me, my heavy laptop and full allocation of flight luggage arrived at the University Campus train station. Then there was another 10 minute (mostly uphill) walk to the campus itself.

"Just report to the reception and they will allocate you a room" the girl at the Scholarship desk had said, which at least kept me going through the horrendous metro journey. When I finally found reception (which had no written signs, but was fairly obvious by a long trail of people queuing), I waited around another hour to reach the head of the queue, during which time an elderly gentleman who had been several places behind me, was inching his way up the side of the queue, much to everyone's' annoyance, including mine, until he had not only passed me, but three other people in front of me as well. Tempers were frayed but, surprisingly, no one said anything to him, making their unkind remarks amongst themselves excusing him because he was "an old man". Finally, another younger man in front of me approached the check-in desk, gave his name, and the receptionist said "You're not on my list, are you sure you have accommodation arranged with us?" My heart sank. I had NO paperwork relating to my accommodation and began imagining nights trawling the streets of an overbooked Barcelona looking for a place to stay.
The younger man was told to sit whilst they contacted the Conference Centre and I was beckoned forward. Hesitantly, I gave them my passport and closed my eyes waiting for the bad news. "Mr Lishman. Yes, Here you are. Room A207". I breathed an exhausted sigh of relief. Then came another surprise. "You'll be sharing with three others, two to each bedroom". By now I was so weary that I really didn't care. I just wanted to unpack and relax, so I made my way to the flat, the door of which was open when I arrived. Inside I found two young men unpacking their things into the first bedroom so I continued into the apartment and located the second bedroom, wondering what new friend I was going to make during my stay at the campus. (OK, you're probably ahead of me again...but for those who are not...) I walked into the bedroom to find it was Mr Queue-jumper, unpacking and staking a claim to the best bed/wardrobe etc. I was greeted with a look of distain complimented only by a grunt in some totally indiscernible language. I grunted back, too tired to do anything but retreat to the sitting room and allow him full run of the bedroom (which in any event was too small for two people to negotiate the complexities of temporary nest-building).

"Telling your story" worksop

Half an hour later, my new roommate left so I ventured into my new dormitory and unpacked. Totally drained by the events of the day I lay on my bed and decided that even though I was dead beat, I HAD to make the effort to venture back into Barcelona, after all, it was Saturday night. I showered, changed and must admit, felt somewhat refreshed and made the long journey back into Barcelona centre, where I decided that it was time to treat myself to a decent meal and so headed for the nearest decent looking restaurant and fed my face. It was now 9.30pm, and the beautiful streets of Barcelona were teaming with its cosmopolitan visitors. The city was vibrant, inviting and begging me to join in but I'm afraid that my batteries were now completely flat. The hearty meal had been the final nail in my recreational coffin and, to my surprise I did something I very rarely do... I gave up. I decided that as I had a whole week here, the town could wait, and so, once again, took the hour-long journey back to my digs, staggered up the three flights of stairs and fell into bed.

Sunday ... a day of disappointments
When I got up on Sunday, I decided to have a good read of the contents of the small welcome envelope I had been given at one of the many "registration" desks I had visited the previous day. It became clear that although I had my accommodation sorted out, I had still to finalise my conference registration. Although I had registered on arrival, it became clear walking around the university campus that I was not in possession of all the conference material, not to mention a small, rather neat blue (logo embossed) backpack sported by almost everyone in sight.

So, bearing this in mind I headed for town at 8.00 am. Several weeks before arriving at the conference I had pre-registered to attend the "Community Forum", a satellite session taking place from 9.30am on Sunday, which was exclusively for people living with HIV. There was a morning session of positive speakers and a further session in the afternoon where the delegates could get together and swap ideas and experiences for the common good.

I arrived at the centre at 9am, so with half an hour to spare, I decided to get the rest of the things I obviously needed for the rest of my stay. One HOUR, numerous queues, one blue bag and about 10 kilos of literature later, I headed for the Community Forum, which, to my disappointment, was well under way.

AIDS quilt on dispklay outside the conference

This session was basically several extremely eloquent speakers. Their main theme was the progress (or lack of) in the HIV field since the previous conference 2 years earlier in Durban. The Chair (who stressed the importance of the afternoon meeting) closed the session and we all headed for the "free lunch" which had been provided by the conference organisers. When I arrived and saw the queue (about 600 people) I decided that I had neither the inclination nor desperation to stand for most of my lunch break, so sneaked off to one of the several (reasonably priced) cafes and ate my meal. Bang on the stroke of 2pm I arrived at the afternoon session to find ... the facilitators ... and about 6 people ... still eating their free lunch. The horrendous queue had gone, and with it most of the potential delegates for the afternoon gathering. I hung around disappointedly for about 20 minutes, but eventually decided, disappointedly, that this was one session that wasn't going to get off the ground. I took myself off around the centre to see what I could find and, almost immediately, found the Exhibition Hall ... full of the familiar faces from the morning meeting.

The drug company stands were knee deep in people filling in quizzes and questionnaires in order to "win" free T-shirts/pens/bags/gadgets/paperclip holders etc., all emblazoned with pharmaceutical logos. The drug companies certainly know how to market their products although I'm still reeling over one freebie - a stainless steel drinks cocktail shaker - get it - "cocktail"... no, I wasn't impressed either. Bad taste? or a bad use of resources? Take your pick. Personally I though it was both.

My backpack was telling it toll, and I was starting to ache from head to foot. Tired, disappointed and frankly a bit cross, I decided to head for home. The official opening ceremony was at 7.30, and I didn't want to miss that so I trudged back to my apartment with all my new registration "goodies" (which weighed approximately the same as my travel luggage from the day before), experiencing a high degree of deja vu. The journey seemed even worse than the previous day, but I arrived back with the knowledge that the opening ceremony was going to be something special, I sorted out my new acquisitions and decided to just sit down and relax for 5 minutes. Big mistake. Unwittingly I fell asleep and woke up at 7pm and with an hour's journey into town, I knew I had missed it. Things couldn't get any worse. Or so I thought.

Monday ... a day of challenges
I woke up feeling very unwell. Those readers who are HIV positive will know that some days are "one-of-those-days" days. This was one of them. I'm not sure if it was all the stress I had experienced since leaving the UK, the physical toll of all the travelling/carrying/walking or just "one of those days", but I knew I couldn't face a full day at the conference.

As well as the Community Forum, I had also pre-booked a workshop for this afternoon, which I desperately wanted to attend. The session was entitled "Migrating Populations and HIV (with particular reference to asylum seekers and refugees)", something which is particularly relevant to our work at Buddies, so I decided to cut my losses and not go into town until lunchtime.

The session was fully booked and was well attended by people from all over the world. Norway, Germany, Japan, USA, UK, Thailand, Switzerland and, of course, Africa to name a few. Their experiences ranged considerably, as did their level of involvement, from small Community based Voluntary organisations like Buddies, to someone from the World Health Organisation, with every level in between.

After a short introduction and a brief outline on the basic problems in helping moving populations with health issues, we were split into three groups to tackle three main areas of difficulty, subsequently those groups were split into pairs of people to share their experiences with each other. Each couple was asked to feed back to their group, and the three groups fed back to the main group.

There were many varied examples of successfully working with migrant populations, from Thai fishermen to illegal Mexican immigrants, and as the session progressed, I was surprised that these diverse groups had many similar problem areas.

I have to confess to actually understanding about 10% of what was being said, partly because I have no experience in this area whatsoever, and partly because of the jargon that was being used. Although everyone in the session spoke in English, for me, a lot of it might has well have been in Mandarin!

One of the stands defaced by ACT-UP Paris

However, I did learn one very basic fact; that for someone who is relocating to a new place, for whatever reason, health issues (and particularly HIV) are not usually at the top of their agenda. Work, money and housing are a few of the few things that are usually way above health, and we have to recognise this and plan our work accordingly - working successfully with this client group necessitates the involvement of many other agencies and something that we should not, and cannot, face alone.

It was certainly a steep learning curve, and I was very glad I had decided to save my energies for this session. This workshop was a challenging 3 hours of hard concentration (and frustration), but one which I felt had opened my eyes to the complexity of dealing with relocated populations.

Tuesday... a day of rewards.
My day started with an oral presentation on rising risk behaviour in men who have sex with men (msm). This session consisted of the findings of six different studies from as far afield as San Francisco to Bombay and included one from the UK. Although extremely well presented by all concerned, there seemed little new information that we did not already know, namely that msm are having more unprotected sex than they were doing 10 years ago. Whilst it was interesting to learn how the surveys had been done and analysed so as to reflect the true picture of what gay men were actually doing (as apposed to simply admitting it more freely), the conclusion drawn from these studies simply reflected what people on the ground already knew, and were rather unrewarding. I felt disappointed that no one seemed to offer any hypothesis on why this was happening (maybe that was a different presentation) and came away feeling somewhat frustrated. I met afterwards with someone who had also attended this session and was relieved to find out that they had felt the same way, especially as they held a very senior staff position in a well-known organisation similar to Staffordshire Buddies.

The afternoon session was the one that I had most been looking forward to since arriving in Barcelona. Once again, this was a skill building "workshop" that I had pre-registered for entitled "Telling your story - How to decide: People living with HIV & AIDS in Education & Advocacy". This was aimed specifically at positive people (but also at those people that work in HIV prevention) in helping themselves or other HIV+ people to decide if they are ready to "tell their story" in order to become involved in HIV education (such as going into schools and talking to the kids) or indeed just about becoming open about their status to family, friends and work colleagues. I was delighted to see another full house with people from all corners of the globe, and a facilitator who was herself HIV+. A quick introduction by everyone in the room revealed a great diversity of people who were at different stages along the path of being involved in this kind of work, from those people who had been doing it for many more years than myself to those who were wanting to get involved but needed to know the possible pitfalls and rewards. The facilitation was excellent (no "group" working and "feedback", which I personally hate), with the pace being dictated by the delegates rather than the facilitator. I was particularly impressed by the (voluntary) attendance of a Member of Parliament from South Africa, and the session took a very structured but informal approach. People shared their experiences (both good and bad) and others viewed their apprehensions and fears. The frankness and honesty was refreshing and the anecdotes ranged from amusing to downright frightening. We all learned things from the experiences of others and the facilitator showed us several different ways of how positive people can be involved in education and advocacy, not just simply standing in front of classrooms full of children. These ranged from simple letter writing to the more adventurous use of the media such as appearing on TV talk shows. The discussions were interspersed with video clips of different styles of presentations and the three hours whizzed by before I realised that I hadn't wanted a cigarette (which, for me, is always a good indicator of how interesting something is!). I left the session feeling that I had not only learned but also contributed - something that all "workshops" should aspire to do but rarely achieve, and I also made some new contacts that could prove very helpful to Staffordshire Buddies and its service users. This session alone was my reward for all the hassle during my preceding days of the conference, and at last I felt that my gruelling trip to Barcelona had been worthwhile. I travelled back to the campus with one of the female delegates from the workshop during which we had a good long bitching session about the conference accommodation and travel arrangements, which made the journey seem less strenuous, and made us feel better. Nothing quite like a good moan to set you right!

Wednesday ... a day of differences
I woke refreshed and in a new frame of mind. Maybe it was the success of the previous days programme or maybe just that I was getting used to my surroundings, but I definitely felt different. I didn't feel anxious, stressed or frustrated, I felt remarkable cool, calm and collected. Cool - because the temperature was not so high as it had been on previous mornings, calm - because I felt that the previous days events meant my trip wasn't in vain, and collected - because by now I'd collected most of the literature and taken enough photos to bring back home. My day was already planned out, with three sessions spread evenly throughout the day, all with fairly generous comfort breaks spaced neatly in between them.

My first one was a lecture on Immune Response to HIV, which I thought sounded quite interesting in the program notes. I arrived on time, got a great seat in the huge auditorium, and settled down with my pen poised at the ready. The session started and within 10 minutes I knew I had made my second big mistake of the conference. This was a scientific presentation, and although my knowledge around HIV is quite extensive, a scientist I am not. Within 5 minutes all the words on the huge stage presentation screen had more than 20 letters each, with far too many x, y and z's in them for my poor brain to cope with. Complex formulas, graphs and pie charts were flashed in front of me with the speed of advertising posters whizzing past a train's window arriving at Earls Court tube station. I decided that the best way to cope with all this was to leave it all to the scientists. At least they knew what they were talking about, and after all, the rest of the audience seemed enthralled. So I cool, calm and collectedly left the hall and walked out into the beautiful Barcelona sunshine and had a cigarette.

Palau St Jordi

A change of plan was called for so I decided to do something completely different and go and see the Poster Exhibitions. This consisted of a massive exhibition hall neatly divided into rows of display boards crammed full of posters. However, the posters they carried were very different to what I was expecting. These "posters" were in fact actually pictorial and written presentations of research and work carried out by hundreds of HIV and AIDS organisations from all over the world. It would have been physically impossible to read them all even if you did nothing else for the whole week of the conference. This then, called for a ruthless rapid approach, walking around reading headlines and stopping only to read at those that you had a real personal interest in. Those that I did read were fascinating, and I was delighted to discover that a synopsis of the contents of every single poster in the exhibition was available on one CD-rom, which I immediately got a copy of.

Suddenly it was lunchtime and I sat in the sun with my meal, very pleased with the morning's outcome. After lunch I went to hear four speakers presenting reports on "Psychological Support Issues in Prevention and care" something that I though was going to be really heavy going. Wrong again! This session turned out to be very bland, with presenters telling a whole load of stuff that anyone who has worked with HIV+ people before could be forgiven for muttering in their sleep unknowingly. It covered the aspects and difficulties surround disclosing your HIV status to other people and the psychological problems that this can bring, but with the depth of a puddle. The 4 sessions were all different in style but the words "eggs", "grandmother" and "sucking" were uppermost in my mind all the way through. Quote of the session had to be "those who experience rejection by their families and partners are often depressed"...not exactly rocket science is it? Still, the air-conditioning worked well and got me through the afternoon's heat.

My final session started at 6pm. This was about treatment adherence and was absolutely riveting. All the presenters were from New York, and I was spellbound from the start. Yes, they covered some obvious facts around adherence (and the lack of), but the difference was that these were interspersed with gems of sparkling new ideas and practical models that can be applied everywhere in the world at virtually zero cost. The highlight of the event was the fact that two of the eight speakers were actually service users, bringing all the adherence management theories and models completely to life. I would like to pay my respects to one of them in particular, Harry Dohnert (who works as a peer educator), whose presentation on his personal issues around his own adherence was so profound, truthful and beautifully simple that I was moved to tears, something that rarely happens to an old cynic like me. With him on their team, it is no wonder that the Harlem Medical Centre is having good results with its patients. I'm so glad he came to Barcelona and that I was there to hear him. Thank you Harry.

Thursday ... A day of demonstrations
After having experienced a very productive workshop on Tuesday, I decided to start the day with another one running along similar lines. This was entitled "People Living with HIV/AIDS as Educators" and I was expecting something similar to the previous event, which just goes to demonstrate how wrong I can be (again). I had arrived early and had sneaked to the front of the room to see if I could get the 'printed material' before the session started rather than queuing for it at the end. It was whilst I was scouring the stage that I saw the timetable for this session lurking menacingly on the corner. This was to be a 'workshop' workshop, and was about to be my worse nightmare come true, complete with all the elements that I hate the most ... an 'icebreaker game', 'working groups' feeding back to the 'main group' and even the dreaded 'role playing'. Why I didn't just spin on my heels and leave I'm not sure, though it was probably because I had enjoyed Tuesday's event so much. I reasoned that this was a WORLD conference, so that must mean we have the best facilitators going and decided to take my place and to at least give it a chance.

The session was due to start at 10.30, but by 10.45 there was still a mediocre turnout of delegates so the facilitators decided to start regardless but with a change to the order of the programme (in case people arrived late). We were immediately broken down into 'smaller working groups' and set to work. I wont bore you with the details, but I was thrust into a small group of people who were all totally confused as to what we were expected to do (including me), without any introductions, and all feeling very embarrassed by the shambles that ensued. Sure enough, as predicted, some late arrivals joined us and we eventually struggled through the first 20 minutes, although personally it felt like 20 hours. We were called back into one group but instead of feeding the work we had done back to the group, the facilitators decided to revert back to the original programme and play the 'ice breaker' game, which frankly was a bit late. The game was embarrassing and pointless, and set the tone for the rest of the session. It was so excruciating that during the 'role play' section I went for a cigarette and a glimpse at the real world, just to make sure that it wasn't all a bad dream. When I returned it was no better, and for the rest of the session I had great difficulty resisting the temptation of going outside and lying in the hot morning sun. This was a perfect demonstration of how not to facilitate a workshop and of how to waste 3 hours of potential learning time. Thankfully I managed to salvage one idea, but that came from a conversation I had with someone sitting next to me!

The first afternoon session was a selection of speakers reporting on findings in studies of gay men to establish what effect (if any) HARRT had on their sexual risk behaviour. Other studies have been showing that gay men are becoming riskier in their sexual behaviour over the past few years with rates of HIV and other sexually transmitted infections on the increase. I have to admit to thinking prior to this presentation that HARRT probably had made gay men more complacent about HIV, but (true to my form this week) I was wrong again. Each presentation showed that there was no evidence to show this and demonstrated it quite clearly. One speaker was asked to give her personal opinion as to what she thought was the reason and suggested that it could well be the massive increase in recreation drugs which have become mainstream on the gay scene over the same time period, though no studies had been done to show this.

The final session of the day was about structured treatment interruptions (stopping and restarting HARRT in a controlled way - e.g. one week on drugs, one week off drugs) and their potential for managing HIV disease, and several speakers presented trial findings with "interesting" results too complex to go into here, but the general feeling was that this was something that is still in the very early stages of development and that many more trials were needed to demonstrate their long term effectiveness.

Afterwards I walked through the Exhibition hall just in time to see the activist group ACT-UP (Paris) storm the stands of all the major companies defacing them with posters, paint and marker pens. They were demonstrating about (amongst other things) the drug companies' refusal to grant greatly reduced royalty patent licences to the third world (to manufacture much cheaper HIV drugs). There were daily demonstrations at the conference, and more than justified in my opinion. During the opening ceremony on Sunday, the crowd booed the Spanish Minister for Health because many HIV+ people booked to go on the conference were not able to attend because they had been denied entry into Spain due to "visa problems". ACT-UP struck a different target every day of the conference and certainly raised the medias' attention to the scandalous way HIV+ people all over the world are being denied treatments for various reasons.

Friday ... a day of memories

Nelson Mandela speaks at the closing ceremony

The only thing on today's agenda was the closing ceremony, which was due to start at 12noon. This meant that I could have a lie in and take the journey into town stress free. I arrived at the conference centre and walked the half-mile or so to the futuristic Palau St. Jordi, which is in the centre of the huge Monte Juic Park, arriving at 11.45 and got a rather good seat considering how full the hall was.

I sat down and we waited for the ceremony to start, but by 12.45 we were still waiting patiently. Suddenly a group of about 30 African people, (some in beautiful traditional costume) that were sitting in the centre of the auditorium, began to sing and within minutes the whole audience was on its feet clapping along.
Eventually the ceremony got under way and we were addressed by the outgoing and incoming Presidents, but more importantly (for me), by a positive woman who had been invited to speak on behalf of positive people all over the world, and speak she did. She was not afraid to criticise the disproportionately small amount of exhibition space allocated to the non-government organisation (compared to the drug companies) or the fact that future conferences need to be situated in countries with better access for positive people.
She was clearly overawed by the honour of being asked to represent positive people, something she did with great dignity, passion and humility. This was a very moving experience, and although Bill Clinton and the legendary Nelson Mandela eventually addressed us, this will be my strongest memory of the closing session.

I left the hall and walked back through the park in the glorious afternoon sunshine, remembering the week's events, the people I had met and contemplating what attending the conference had mean to me, and what I had "learned".

Though I had not really learned any groundbreaking "new" information or techniques in helping those affected by HIV, what I had learned was the true enormity and scale of the worldwide pandemic. Sure, I already knew the statistics and percentages, I'd seen the charts and read the reports, but for the first time I truly understood to what extent this disease is devastating our planet, and the lives of the people outside of the UK. I had seen the passions and frustrations of those people whose entire communities are affected, people listening with envy at conversations about drugs, services and support mechanisms that they simply don't have. I saw, first hand, the inequality and injustice of simply being born in the "wrong" place, and the amount of suffering that this disease has already caused and continues to do.

I had also seen strength, determination and willpower on a scale unimaginable. From scientists, doctors, community leaders, workers and, probably the most enviable from my viewpoint, people living with the same disease as me, in conditions that I'm sure would defeat me, even if the disease didn't. I had seen and talked with people who make everything from nothing and turn despair into hope.

I may not have brought any new facts back to the UK but I have acquired a new perspective. I have learned that we have to maintain pressure on those who can improve the lives of people with HIV and refuse to accept defeat, whether on a local or international level. I come back with a new vigour, and, hopefully, even one millionth of the determination of the people I have met.

Bob Lishman

Thanks to Roche Pharmaceuticals for their kind donation.