The Birchgrove Group interview Mark Simmons

 

Posted by Dan Farthing-Sykes

 

The Birchgrove Group is a support group and platform for views for people with haemophilia, their wives and partners who were infected with HIV/AIDS and hepatitis C through blood products in Great Britain.  There were 60 people in the Scottish bleeding disorders community who were infected with HIV in Scotland.  Today, just 21 are still alive.

Mark Simmons is a very well respected Haemophilia Social Worker who has been working with people with bleeding disorders and HIV since the very early days of the infections.  The Birchgrove Group has released this interview with Mark on their YouTube channel.  We are reposting it here that more people can have an opportunity to hear Marks views on how the HIV infections have impacted the bleeding disorders community in the UK.  It is particularly interesting to see how the Scottish process is viewed by affected people in England and hear the similarities in how the infection has affected people’s lives either side of the border.

If you have been affected by these issues and would like to discuss them, and you use the Edinburgh Haemophilia Centre, then you might like to contact the new Psychological Support Service.

 

 

 

 

 

 

About The Birchgrove Group

 

 

Birchgrove is a support group and platform for views for people with haemophilia, their wives and partners who were infected with HIV/AIDS and hepatitis C through blood products in Great Britain.

Our name came from a pub in Cardiff where the founders met nearly 30  years ago. Over this time Birchgrove has gone through many changes, as has the developing world of medicine, our life expectation and also the loss of over 900 people living with haemophilia and HIV/AIDS in The UK to date.

This is our website and you can find a history of the group, information about the Woodland Grove (a wood dedicated to people with haemophilia and HIV), a back catalogue of our newsletters and a few other things we hope will interest people with haemophilia and HIV/AIDS and our partners, carers, families, friends and people wanting to broaden their knowledge of a piece of medical history through the lives of those who have lived it. There is a contacts page if you want to get in touch.

Below are some words from a group member, who we think encapsulates perfectly the reasons why Birchgrove has been reborn.

“In the late 1980s the fear of HIV/AIDS was very prevalent within the general population; misinformation and unfounded rumours on how you could catch the virus abounded, with huge stigma to those infected along with their families. They were ostracised from communities.

“Although at the time other groups infected with HIV had a voice, Haemophiliacs did not, and the problems Haemophiliacs were facing were totally unique in their fight against HIV/AIDS. Consequently Birchgrove came to existence to advocate, give information and be a general support group for Haemophiliacs and their families infected and affected by HIV from NHS contaminated blood.

“It was then found that the majority of the 1240 Haemophiliacs infected with HIV/AIDS had also contracted Hepatitis C, again via NHS contaminated blood. The Birchgrove group continued in their support of those affected, but the group reluctantly ceased their activities 10 years ago through lack of funding; also sadly the majority of Birchgrove committee members had passed away.

“Now 10 years later the surviving ~284 Haemophiliacs with co-infection are once again finding it extremely difficult and at times frustratingly impossible to get their voices heard and have a platform to be able to inform politicians, parliament and the public of the myriad of problems that this small community still faces on an everyday basis.

“And so it was felt important that our voice needed to be heard again, as it seems to be unheard when compared with other groups. Consequently that is why it was felt imperative to restore the trusted and proud name of Birchgrove along with this newly launched website to support and help our group again.”

 

 

 

For haemophiliacs, their wives & partners
co-infected with HIV/AIDS & Hepatitis C
by NHS supplied blood products

 

 

 

The Woodland Project

 

In 1996 The Birchgrove Group sponsored the planting of 1200 trees at the Woodland Trust’s woodland creation site at Stratton St. Margaret, near Swindon, Wiltshire. This grove of trees will create a living and lasting tribute to the lives of people with haemophilia who were infected with HIV via contaminated clotting factors. lt was intended by Birchgrove that this woodland should become a peaceful place for people to visit and remember those who had their lives so profoundly affected by HIV.

Stratton Wood forms part of the group of woodlands freely open to the public and collectively known as the Great Western Community Forest.

This grove of trees is not only a memorial to those who have sadly died, but also shows the resilience and strength of those who are still affected and living with HIV/AIDS.

 

 

 

www.birchgrovegroup.org