Nicola

As the Infected Blood Inquiry draws to a close, Nicola – who contracted hepatitis C after a blood transfusion but was not diagnosed with hepatitis C until over 30 years later – reflects upon her journey, the fight for justice and what she would like to see happen next.

You may have read in the headlines that after five years, the Infected Blood Inquiry is reaching an end. But for us, the survivors and loved ones of those who received contaminated blood, it will never end.

This tragedy has changed our lives, shortened lives, lost lives, lost our futures, tainted our spirits, made us mistrust and lose confidence in ourselves and others.

I was infected with hepatitis C following blood transfusions in 1975 and/ or 1980. I was only diagnosed in 2009 and received the horrific treatment of Ribavirin and Interferon in 2010 and consequently suffered the life-changing effects.

I felt that my body had been violated, that I had been physically and mentally abused, stripped of my dignity, my self-esteem diminished, I mourned lost opportunities, I felt betrayed, I lost faith.

When the Infected Blood Inquiry began in 2018, I built up the courage to come forward with my story and was asked to present evidence in person. I felt so nervous about sharing my story in such a public space but received a lot of encouragement and support. I knew how important it was to let the Inquiry hear what I had been through and that it was the best way I could contribute in the fight for justice.

Some of the faith and confidence I lost after my diagnosis was restored thanks to the wonderful community I met through the process. It was the first time I’d been in a room with people that really understood the many complex feelings I felt about being a victim of this scandal. We are united, thrown together through no fault of our own by one common theme; contaminated blood.

When I hear the stories of our community, I am struck by the extent of loss – the loss of education, careers, families, loved ones. The loss of the security that comes with knowing you have a steady job and the comforts of a carefree life.

Our predicament, through no fault of our own, has now lasted for many decades, unnecessary suffering and numerous deaths, consequential medical and psychological trauma, medical and administrative failures, failed promises and knock-backs.

This inquiry has highlighted so many areas in need of change and improvement. Some are to such an extent obvious and that’s what makes it so infuriating.

I truly believe that the evidence heard has proved that this has been a multi-system failure that has categorically been allowed to fester and grow – much to our detriment.

For any justice to be delivered, all of those infected and affected by contaminated blood; the self-clearers, the bereaved parents, the bereaved children and those infected after the deemed cut off dates must be recognised and included.

We have long awaited recognition and action, and we now need to have our confidence in fairness and morality restored.

Every effort must be made to find those who are still not yet diagnosed. We’ve heard about the historic ‘look back’ exercises in some parts of the country, why not everywhere? Why not now?

The NHS must modernise and improve its record system to ensure accurate and complete communication between secondary and primary health clinicians. Improvements must be made across the board to ensure patients are listened to, followed up on and cared for when they raise concerns about their health. The government must ensure the NHS is properly funded to ensure that it can function properly and that mistakes of the past are not repeated.

What happens next when this is all over? Are we yet again going to be fed empty gestures and left waiting for responses and action, therefore prolonging our anxieties? A government minister said “time is of the essence” so that should be honoured by a timetable of updates detailing the progress of the implementation plans.

When I was first diagnosed with hepatitis C, I felt alone and joined the fight for justice to be part of something bigger. The community I found has changed my life and I have made some wonderful lifelong friends. My hope for all of us is that by speaking up and sharing our stories we will ensure nothing like this ever happens again.