Four far-sighted men approached their Centre Director in Cardiff to talk about their common needs. They knew their HIV status was going to be tough to live with. They had already witnessed the discrimination suffered by the first two men with haemophilia to die of HIV in Wales and wanted to end the isolation and secrecy. They knew that if they were infected, so too were many of their fellow haemophiliacs who had used treatment between 1978 and 1984.
An immediate response for support was not possible but a bid was made to The Welsh Office for funding to include a Social Worker for the Haemophilia Centre.
In January 1987 Mary Dykes was appointed as the social worker with funding from the Welsh Office and returned to work again with haemophiliacs some of whom she had known in the 1970s. During 1987 the group often consisting of only 2 or 3 met to discuss how to proceed. The haemophiliacs decided what to do and Mary acted as a facilitator for this.
The topics of concern varied widely, how to lobby MPs to gain recognition of the infection of haemophilia treatment; how to reach other people living with HIV and haemophilia elsewhere in South Wales; how to deal with jokes about AIDS; direct question about it from friends and family and the problems of so little medical knowledge about the condition. This was 1987; Rock Hudson had been dead only 18 months, Freddie Mercury was still making records, the Macfarlane Trust did not exist yet, no money had been offered to any haemophiliacs for infection of their treatment, jokes about AIDS were common, adverts with icebergs and pneumatic drills ran on TV and every household was sent a leaflet, "Don't Die of Ignorance", warning of the dangers of AIDS.
The Haemophilia Centre wanted to help the Group but did not want to breach confidentiality of any patient. The group decided to ask their centre director to send out a letter to all the patients living with the virus. He agreed and four choices were offered to all those that received the letter.
Most people responded though many were wary and went through many of the options often starting at 1 before getting to the group. The letter did trigger informal discussions in the waiting room, though, and people began to realise that they were not alone.
By the end of 1987 the group was meeting in a pub - 'The Birchgrove' from which the group gets its name. (The pub is in the district of Birchgrove in Cardiff). They met monthly sometimes with speakers and funded it by having every one put a pound in the kitty to cover postage and costs.
The Group started to make links with other organisations locally, particularly Cardiff Aids Helpline who proved to be a useful ally and advocate. Funding for a second social worker for the centre to look particularly at the needs of wives and partners was appointed and money from a number of sources including the local Health Authority donations from private companies and from charitable sources funded a weekend in Torquay for haemophiliacs and their families.
Two haemophiliacs in particularly, Paul and Gareth made things happen for Birchgrove during this time. They got money from people and agencies, organised events and came up with ideas about what to each month. They brought together funding to organise a weekend away in Torquay.
"Mary Dykes contacted the Haemophilia Nurse at Singleton Hospital, Swansea where I lived and I was invited to a free weekend. I could not believe it, a holiday I could afford and one specifically for haemophiliacs with HIV. I went along with my girlfriend and met other haemophiliacs with HIV for the first time."
Robert (current Chair)
At about this time Cady was trying to set up a group in London independent of the hospitals, despite hindrances from his haemophilia centre.
The Group grew to include most of the people in Wales infected through blood products. Some meetings were arranged so that they boys with HIV and their parents could come along. Meetings were as much a possible supportive of each other. Birchgrove had come from small meetings in a pub where every one contributed a pound to a group of over 30 going on a fully funded weekend in London at Christmas time. Very useful for those needing to get to Oxford Street and a chance to meet the group that Cady had formed. Everyone was shocked at meeting the other group, Cady had not expected to see "all these hundreds of people" and those from Wales were amazed the London group was a mere 3 guys.
"I shall always remember the way people looked after each other whether it was helping someone settle into their hotel room who had never stayed in a hotel or even visited London before or collecting meals for those who could not queue at the Carvery, to those who needed a shoulder to lean on, after a couple of drinks reduced defences and made it possible to share their worst fears."
Mary Dykes former Social Worker at Cardiff Haemophilia Centre
Birchgrove collected funding and organised the first ever National Conference for HIV positive haemophiliacs in Britain. As Gareth, said, "it was an arduous task, but we managed to achieve our goal and from this conference various self-help groups began to spring up across the country".
The conference was a success best highlighted by this quote:
"It is hard to impart my feelings, but no one would have believed that a weekend could change someone's life so dramatically and as much as the one you have just held did. It was an experience that I shall remember for the rest of my life."
A positive haemophiliac
A number of national events have since been held and Birchgrove has been involved in health promotion work, lobbying locally and nationally, and trying to educate people about the particular issues haemophiliacs with HIV face. Birchgrove also started producing a newsletter during this time. It is mainly written by haemophiliacs with HIV in Britain and their lovers, families and friends along with medical bits, moans about shoddy services and anything that makes the editorial committee laugh.
Paul came up with the idea of a memorial to everyone with haemophilia infected with HIV in the UK and 1200 trees in Stratton Wood were chosen and a small plaque installed.
Paul died in early 1997 giving everyone a time to reflect on the pains of being involved in the group. Birchgrove had regularly seen people die and it is one of the sad things about getting to know other haemophiliacs with HIV, they can get ill and die. Paul's death marked the end of an era in Birchgrove and a good friend to many was gone.
The group continued with new issues to confront. Treatments effective for many against HIV became more available but could be very difficult to live with. The treatment did not work for all, were not wanted by some and caused many awful side-effects. More and more haemophiliacs, both with and without HIV, were diagnosed as having hepatitis C. Those with HIV bore the brunt of the deaths from liver disease, partly because HIV advances the course of the disease and because the HIV medicines were not good for the liver. Cady died in November 2001 having cared for his wife until her death a few years before and Birchgrove's 'little Buddha' had gone.
"Each death caused ripples through Birchgrove and when members felt down or unwell they hadn't always got the energy they needed to devote to The Group. However difficult and sad it could be to attend another funeral, most agreed the gains (of being in the group) far outweighed the losses."
Mary Dykes again
Gareth had been for many years the central stem of the group at this point and his determination ensured it kept going after Paul's death. Gareth was often unwell and in 2001 he decide it was time to break from Birchgrove. He had been involved since it began and had seen all the changes that had occurred. With the leaving of one of the original four men an evening in his honour was held in Cardiff and the newsletter was re-vamped to mark the end of a significant era in the development of Birchgrove.
Richard a long time reader of the magazine said of this time, "whenever I managed to get through on the 'phone to say I found something stupid/offensive/wrong it was always discussed and my point of view accepted as a valid one even if the person did not share it. If only larger organisations had been as cool as Birchgrove about criticism a lot more could have been done for us all."
With Gareth gone those of us involved had to use what we had learnt from him, Paul and Cady to continue. There were fewer groups around the country partly as there were fewer of us left alive and hopefully because people felt less isolated. Birchgrove North continued to meet and their Christmas Parties developed a reputation for merriment, dancing and arthritic ankles.
We lobbied the agencies providing support, particularly the Macfarlane Trust and The Haemophilia Society to improve their services and tried to have a presence in the HIV and Hepatitis C sectors to promote the needs of haemophiliacs with HIV. The new-style newsletter proved a success with funding initially from the Haemophilia Society and then an award from the Big Lottery Fund for a year. The Macfarlane Trust began a rolling programme of events for haemophiliacs with HIV and we were actively involved in their planning, organisation and often speaking or running workshops as well.
2004 saw the realisation of Paul's idea with an Open Day at Stratton Wood to formally unveil the stone on the 23rd of May, 2004. Over 100 people came to see the event and the enjoy the 1200 trees planted to celebrate all our lives. Gareth compèred the event with a number of speakers as we remembered those who had died and enjoyed the company of those still living on a beautiful spring day. A huge red ribbon made up of 1200 smaller red ribbons attached to a bright green cloth was pulled over the rock to reveal the inscription: "Birchgrove - this grove celebrates the lives of the 1200 people with haemophilia infected with HIV". Alan organised the filming of the day and a DVD was produced and sent out with the following edition of Birchgrove.
Also in 2004 a project began collecting the life stories of people with haemophilia and HIV. Many of the important people in the history of Birchgrove from it's very beginning to the present day took part and their personal recollections and understandings about the dramatic history they had experienced were stored for posterity in the National Sound Archive at the British Library.
In 2005 Birchgrove became a virtual group and joined the information age with its new website. Naturally we picked Andy, a web designer who was part of the group. We ceased printing the newsletter as there were many other means of communication and mutual support for people with HIV and bleeding disorders which did not exist when it began. News could get to people more quickly by email and with bulletin boards set up by the Macfarlane Trust and the Haemophilia Society the need for a newsletter to provide contact had diminished.
Many of us had had major changes in our lives while we have been involved with Birchgrove and whilst so much has changed since 1986 Birchgrove has remained a group of haemophiliacs with HIV who provide what they can in their own time.
It is purely a coincidence but a happy one that the name picked for the group is the ancient Celtic symbol for ‘leading the way’. Silver Birch trees were planted because the moonlight would reflect on their white bark and illuminate the path ahead. The name was chosen to preserve confidentiality and ensure that the Group could book into hotels without being refused because of prejudice against people with HIV. Birchgrove formed in the Celtic country of Wales and has been leading the way since.
By Robert James with help from Mary Dykes and Gareth.
In the years since the Woodland Memorial and the move to a virtual world The Birchgrove Group has remained as it always had been, a group of HIV positive haemophiliacs coming together to exchange information and for mutual support from those who would understand our unique challenges.
Much has changed in the those intervening years with new campaign groups emerging and social media playing an important part in how we communicate, but the fundamental issues we face have not changed. The Macfarlane Trust is still woefully underfunded and poorly administered and Government has yet to hold a full independent inquiry into contaminated blood or give full and proper compensation to those affected.
But there is a glimmer of hope.
In 2013 Alistair Burt MP raised our issues with the Prime Minister in the House of Commons and received a commitment to look at what more could be done for contaminated blood victims. This created a new impetus for our community's campaign for settlement to the contaminated blood tragedy and in the months since has seen unprecedented cross party support and government engagement with our community like never before.
There is a long way to go before a full and final settlement can be reached but statements made by MPs and ministers in the past months would make it near impossible for them not to implement at least some positive changes to how our community is supported.
So, here, now is the new Birchgrove website which has all the latest information regarding the current political initiatives that we hope will see an end to campaigning for HIV positive haemophiliacs and their families.