Long standing haemophilia campaigner Peter Mossman who was infected with hepatitis C following treatment with factor concentrates
Tribute written by his friends and fellow campaigners Colette Wintle and Carol Grayson
It is with great sadness, but equally an honour too, that we, Colette Wintle and Carol Grayson jointly write this tribute to our dear friend Peter Mossman, affectionately known as “Mossie” who died on Friday 17th of December 2021 at the age of 78 after a long battle with hepatitis C and other associated conditions. Peter was a member of the Haemophilia Society and a long- standing campaigner who fought tirelessly for a public inquiry into the tragic circumstances which led to the “worst treatment disaster in the history of the NHS” a shocking scandal of which he was a victim. He was brave, stoical, funny and a true friend who supported us through the many difficult times we experienced over the years and will be remembered with great fondness.
Peter’s greatest achievement was founding the Manor House campaign group in 1994, along with his friend the late Peter Hughes who was co-infected with HIV/Hep C. The ribbon emblem of red, yellow and black that so many people wear today, to represent the HIV/ HEPATITIS C haemophilia victims, was created by Peter’s campaign group, getting MP’s of all political parties to wear the ribbon in support of their constituents at the many debates and campaign gatherings we attended at Westminster and beyond. For many of the younger generations of haemophiliacs who are not aware of the campaign history, it must be realised that in the 1990’s there were no dedicated groups of campaigners challenging the government on the issues of Hepatitis C infection. It was a very difficult task at a time when there was huge stigma and fear over HIV and Hepatitis C, and so few of us who were willing to risk being openly public.
Sadly, the UK government were responsible for creating harmful divisions within the haemophilia community by failing to acknowledge Hepatitis viruses in the same way as HIV. This was reflected in the setting up of a support scheme through the Macfarlane Trust following litigation in 1991 for 1252 HIV infected haemophiliacs whilst at the same time denying those infected with hepatitis C much needed financial support until the formation of the Skipton Fund in 2004. This came about only after prolonged and relentless activism by Peter and other long standing campaigners and the establishment of a legal case to try to overturn a controversial hepatitis “waiver” written into the HIV litigation. The threat of going to court finally motivated government to act. Around 5000 haemophiliacs were infected in total with HIV and hepatitis viruses.
The divisions by virus were grossly unfair and ironic given that 99% of haemophiliacs with HIV also had hepatitis C. Peter refused to be drawn into such political games and in 1994 travelled from Manchester to Newcastle to meet fellow campaigner, the late Peter Longstaff who was infected with HIV and hepatitis C to forge a campaign strategy that would incorporate all haemophiliacs and their families. Both were also active in highlighting the exposure of haemophiliacs to variant CJD and vocal in their support for carers and bereaved families.
Peter, like many campaigners, was very unhappy that little was being done by official bodies to acknowledge the level of harm and damage caused by Hepatitis viruses, so his involvement and hard work in creating The Manor House Group helped to raise the profile of this terrible disease campaigning for better treatment and assessments for liver transplants which were still a rarity for haemophiliacs in the 1990s.
He actively worked with the media, contributed to documentaries and engaged the political support of his MP, the late Lord Alf Morris of Manchester (President of the Haemophilia Society for many years) as well as the late Paul Goggins MP. Peter worked hard to educate Paul on the history of the Contaminated Blood scandal, Paul in turn was instrumental in educating (then) Sec State for Health, Andy Burnham and “turning him around” (as Andy has acknowledged) to become an active advocate for the haemophilia community.
Pete was one of the first UK haemophiliacs to obtain legal aid in 1989 to fight for proper compensation for his hepatitis infection. He worked tirelessly with at least 5 firms of solicitors over many years trying to get his case to court. Carol often accompanied him to Chambers to consult with his legal team and present new evidence but the case was viewed as a “hot potato” that some lawyers were keen to let drop. Sadly after constant battles over maintaining legal aid the case was discontinued much to Peter’s anger and despair. When the files were reviewed at a later date as a new firm took over the archived documents, it was stated that Peter actually had a good chance of winning his case though it had not been allowed to proceed. Another great injustice which caused personal heartache for our friend. Tragically by the time Peter got Milners a good legal firm to represent him at the Infected Blood Inquiry alongside respected QC Sam Stein it was too late for Peter to assist in person due to declining health… the years of fighting for justice had taken its toll.
Peter, alongside a small number of us, were the early activists that despite the decades that came to pass, never lost hope that truth, justice and compensation would be achieved and helped build the platform of campaigning which many recognise and build upon today. He joined us in the early 2000s to file a complaint to the Dyfed Powys police which included allegations of corporate crime/manslaughter, alongside unethical experimentation and trials on haemophiliacs against the Nuremberg Code, without “informed consent, testing without permission, withholding positive test results, and numerous other key issues. He also submitted a complaint to the General Medical Council and met with our American lawyers representing haemophiliacs taking a case against the pharmaceutical companies in the US.
Mossie’s dedication to the cause has benefited many haemophiliacs within our community over the years and inspired a new generation of campaigners to add their contribution to what he helped establish. We give thanks to Peter and value his large volume of painstaking work and the happiness he brought his fellow campaigners along the way and send our condolences and love to his family and many friends near and far.
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.