This first paragraph is the introduction made by Andy
I don’t have to say, everyone already knows the mid-80s was not a good time, especially in the gay community in the UK with the HIV pandemic gripped towards the end of the 80s.
People were dying.
At the time, a group of friends got together, after being diagnosed HIV positive, and knew they were going to die at some point in the next 2,5, the lucky 8 years, something like that.
That said, we needed to make sure we looked after ourselves, 'you come to my funeral if I die first', making sure we had someone to scatter the ashes, making sure the family is alright and all that sort of stuff.
Word got around that a group of friends were doing such a good service for each other.
Other people wanted to join in, and word spread, eventually people started joining from other places around the country.
At that point, the four friends got together and said, 'Let's make this a little bit more visual', one of those people was Tom Matthews, a founder member.
Tom Matthews was chair of the charity when I joined in 2004, and had been for quite a few years before and a few years after that.
He was certainly the heart and soul of the charity for a while, he remained a member and attended regular retreats when he stepped down from the board. He suddenly got dementia and died earlier this year.
This next 45 minutes or so we're just going to have a think about Tom in particular and losing Tom what it means to the group, and we're going to celebrate the fact that in 1992, that group of friends got together with a few others and started with charity.
We are very lucky to have with us one of the other founder members, Angela.
Coincidentally, she emailed just a couple of weeks ago, after she googled us to see if we were still going. I can't believe it's happening, We're just about to celebrate our 30th anniversary.
She has very kindly agreed to come in and just have a few thoughts about what it was like back then, and how this group came to be.
We've also got one of our longest members here, who are going to say a few words.
My part in the journey actually started in Vancouver, as a member of the artistic and LGBT community in Vancouver.
What suddenly started happening, HIV and AIDS began to decimate that community and I lost many of my friends.
Well, bits of the story are not relevant, but I came back to England anyway.
I stumbled around a little bit, and I needed to work, but I also wanted to do something about HIV and AIDS.
So I joined AIDS Lifeline, which was a telephone service and I joined Body Positive in order to support people, I also got a job doing HIV health education with the National Health Service, South Birmingham health authority.
My post was health education, research, HIV and AIDS, I had to go into schools to find out what young people knew about HIV and AIDS.
Now, when I was with AIDS Lifeline and Body Positive, because I had this background and therapeutic experience, I offered to run groups. It was about gathering things together and making art in a therapy sort of manner, and then talking about what ever was brought up.
Now, Tom, came along, and actually, he made wonderful art. He was very, very interested and excited by this idea.
So, one of the things that I'm telling you about is the part that Tom played in it, which I think is a wonderful thing to be able to say as this was 1991.
So, I was doing these evenings with the therapy process going on.
And what was happening is that we discovered that there was actually a client group, I'm sorry I don’t know if this this is now not the politically correct term, but it’s the term we used at the time.
There was a group of people who have needs, and no services, there was a lot of money around providing services for people who were getting ill.
But no services for people who were living with an HIV diagnosis for five years or more, and not getting ill.
So that was going to be our focus, and when we started the charity this was in our mission statement.
Tom Matthews opened my eyes to what we could do and he was a guiding light, and very supportive, he was also a very modest person.
Because of his position in West Midlands Regional Health Authority, you had to be careful about confidentiality issues in terms of his status.
So, the next thing we did was to do a day's workshop, we ran a day's workshop using the same processes and seeing what kind of uptake there was. Doing some flip chart work so that I could actually get a record of what people were saying.
We started get a really good picture of the group of people and what their needs were, very specific.
So, Tom and I looked at what could we do? Let's take this one step further.
And so then, the next thing was a residential weekend workshop.
I cannot remember how the funding came about for the first weekend workshop, we got about £2,000 pounds, it cost about £3,000 pounds a time, which was actually quite adequate money for those days.
In essence, it was probably some from Body Positive, probably some from Aids Lifeline, anyway, so we publicised the event, not just amongst people living in Birmingham, but right across the country.
And we got an uptake of thirty people, we operated the weekend in much the same way as we had done the day workshop and the evening sessions.
So, people would arrive. We would have cups of tea together whilst the arrival process was taking place.
And then the first thing would be that everyone got a chance to say what they might be looking for, what they might be hoping for.
And of course, the main thing was peer group support, it was a chance to share.
We also were talking about needs, people who were getting ill were getting certain needs dealt with, but the people who were not getting ill were not.
It's like a doctor might have said, Oh, you're going to die in six months, pull out your pension, your insurance, quit your job, go on a cruise. Now five years on, still well, no money, no job, no pension, you know, all that sort of stuff.
That was just a couple of examples, but people wanted to share about that, and people were cross about some of these things.
Okay, happy to be healthy, but bit of a blow in the way they’ve been dealt with. So flip charts out.
Then the next morning, I would ask everyone to join together in one room, I would ask them to lie down and do creative visualisation. And in a safe place where they could let some of these thoughts and feelings come out.
Then we would make art, do drawings, do whatever to try and express or to bring out in some way, this stuff.
Then individually, we would go around the whole group with all these pictures and talk, mostly for the rest of the weekend.
So, all in all, that was the sort of general thrust of the weekend, and at the end of it, we would have an open session where we were talking about.
Well, Tom said, this has been fantastic, and that I would like to see, and what I think would be wonderful for everyone here, is if we could know that we've got another to look forward to.
And he said that he wasn’t sure that that would happen, and because of his job, he didn't make song and dance about it, but just went ahead and sorted it.
So West Birmingham Health Authority, gave the first £2000 for the next of the sequence, and it was mainly the same people, but not always because it was publicised now, and I went and pitched to all the Regional Health Authorities, the Health Authorities put up two thousand pounds apiece.
It meant with this funding, the people who couldn't afford to come were totally subsidised to come and people who could afford it would make a contribution sometimes to cover themselves and sometimes to make accessible what would otherwise be inaccessible to other people, it was just a tremendous gelling.
Right. So, this had taken off, and we all felt this was really important and we wanted to make it official, I'm very good at paperwork, so I did that.
So, at that point, I also got some funding from European money to research.
Tom was one of the trustees, there were two other trustees, four of us in total. And their names were Steve Paske, who continued to be an activist in HIV and AIDS in Newcastle Upon Tyne, until he died suddenly in 2011 and the other was Mick Murphy, in Sheffield, who was very supportive.
I had moved from Birmingham to Sheffield by this time.
We got all this organised with the Charities Commission etc, so then we had proper charitable status, which was quite fun.
And now, it did come a point a little bit after this when I came out of it because of a couple of things, it was appropriate, because I couldn't qualify medically, so it was appropriate to put it into the hands of people who were actually living with the virus, and on a more personal level, I have 3 children, one was having a baby, one was going through a divorce and the other was attempting suicide. So, they were acting up.
I think it's everything......that was the beginning.
The retreats were held at Glenfall House in Cheltenham, they were wonderful to us.
There was one little anecdote I can remember, I don’t think it was the first weekend but, everyone had come along, I think it might have been summer, we were having a wonderful late-night session outside. The next morning the proprietors, that were so kind to us, pulled me aside and said that the pond is solid with nub-ends (cigarette butts), so I gathered the group together and said they're really kind to us, we must show them kindness in return – and the garden was made spick and span again!.
I was diagnosed with HIV in the 1984, which means that I belong to the age of the people that were in ‘It's a sin’, I was a middle-aged teenager!
I had just started working in professional theatre, a job I loved and to find out to be in that job for just a year that you were HIV positive - It wasn't even called HIV in 1984.
I think the reason why I was tested for HIV is because my then partner had just come back from a trip to America, and picked up an STD whilst there, so we both went to the GUM clinic, which is just around the corner, unknown to either of us, we were both tested for this mysterious disease.
The results came back, his negative and mine was positive. I thought it must off piggybacked off the STD
The first retreat was not brilliant, but the second one was much better.
The first time I came to Long Term Survivals, as it was called then, was in 1997.
That was the time when the group was nearly closed down because they didn't have the funds, it was Steven Brainsmith who stood up and said yes, we will, the board of trustees have said this is a peer led group and we will answer to that point.
Tom was a guiding light on what's available
On the Saturday night everybody dressed up, it was really really Camp!
We continued the tradition when we came here, but the warden at that time wasn’t impressed.
I remember Tom saying “what's going to happen?, it's not going to be the same” I said Tom, it's not the place, it’s the people but it's nice to be in a place with beautiful surroundings - just like the place now
I brought some pictures which go back to Glenfield, not digital so this is before digital. And also from here at Shallowford.
Now, the 20th birthday is when we planted the cherry tree, then the 25th we planted the rose bushes.
Then you'll notice the fabulous yellow rose apple bush which is really in full bloom and that was a memory of David Carpenter.
HIV is now a manageable condition, no questions about it. But of course, as you get older, it's inevitable that things begin to stop.
I’m 80 now – 81 next week!, it's been a real frustration for me because I have good confidence now, but believe me I was not like this when I was given my HIV diagnosis in 1995 and I was certainly not like this was given my AIDS diagnosis in 1996 and given 6 months to live.
I am where I am and I'm in a good place.
I was diagnosed 1984. For me, it was by giving blood to the Blood Transfusion Service whilst I was at work.
They took my blood and then a couple of weeks they came back to me and said, we need to see you.
I was seen in a private room all and told me I had HIV TB3
So, I did the very sensible thing!. . . I completely ignored it!.
Literally didn't see a doctor, talk to anybody. No support, no social services, nothing whatsoever.
I Carried on working, worked in the UK for a few years and worked in Germany for a few years.
Came back to Manchester and started working in Manchester, I went out in Canal Street and caught an STI.
So, I went to Manchester Royal Infirmary where they said 'by the way you have HIV', I said I've known for 10 years.
'Who is your consultant?' – 'I’m not seeing anybody'.......I was sort of shocked it was so early that no one had said you need to get in touch with medical services and it was so early that there were no support groups with social workers saying to take your pension and stop working - I dodged the bullet.
So many did and told that they only have a couple of years left to live, so they cashed their lives in and went and enjoyed themselves, blowing money – however, survived and had nothing left!
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