Part of the debate – in the Senedd at 3:57 pm on 25 January 2017.
Dirprwy Lywydd, this is less a debate today and more a call for action. We are calling on the Government to act on behalf of those who seek justice for themselves and for their families.
In her opening contribution, Julie Morgan mentioned a constituent of our colleague, Mick Antoniw—Mr Leigh Sugar—who passed away from hepatitis C. Mr Sugar’s aunt is a constituent of mine—Mrs Dorothy Woodward. She has expressed to me her hope that the Welsh Government will do the right thing today and recognise the impact this tragedy has had on the lives of all the families affected. It’s good to see the Cabinet Secretary for Health, Well-being and Sport there to listen to that plea.
I’d also like to speak about the stories of two more of my constituents, who contacted me ahead of the debate today. Mr Kirk Ellis is 35 years old. He has haemophilia and he was infected with hepatitis C at just two years of age. Kirk has continued to work, even when undergoing various chemotherapy-type treatments to eradicate hepatitis C. He’s had such severe side effects that it has forced him to stop treatment purely because it made him unable to work, and he couldn’t afford not to work. Unfortunately, Kirk has been recently informed that he has cirrhosis of the liver, caused by hepatitis C. His disease has not been adequately monitored as there have been delays with the appointment of a consultant hepatologist at the University Hospital of Wales, Cardiff. Kirk had been overlooked, and when he was eventually seen by the newly appointed hepatologist, it was confirmed that he had had cirrhosis as early as May 2015. Unaware of the deterioration in his liver, Kirk and his partner decided to start a family, and they now have a 15-week-old baby. Since his diagnosis, Kirk has continued to work but has lost his disability living allowance and his housing benefit. He feels that he is being penalised for trying to stay at work despite being ill with the side-effects of treatment.
Another of my constituents got in touch to tell me the tragic story of how his family had been affected. His younger twin brothers were infected with HIV and hepatitis C by contaminated blood transfusions supplied by the NHS to treat haemophilia. After many years of terrible illness, they succumbed to the effects of HIV. My constituent’s brothers suffered discrimination, as well as verbal and physical abuse to—and he put this in quotes—’having AIDS’. Their mother never recovered from the death of her youngest sons and lived in her final years with depression. It’s been very difficult for him to contact me and speak about this, but he expressed to me his hope that the personal stories of all the affected families will help to finally achieve some closure on this matter, which is why the names have been on the screen today of those who’ve passed, and why I’m telling these stories.
These are just two examples from people in Caerphilly. Can any of us imagine how this must affect people who are suffering through absolutely no fault of their own? It’s a grave injustice, and it’s absolutely essential that the UK Government holds a full public inquiry into why this has happened. It’s not a party-political issue. The inquiry needs to be UK wide, as these events happened prior to devolution and occurred in all corners of the UK.
I know that the Cabinet Secretary has recently finished consulting on the sustainable compensation package for people in Wales who’ve been affected by this tragedy. I would urge him to listen to their views as much as possible, and their stories, when putting his plans in place.
Kirk Ellis feels strongly that Wales needs to adopt a compensation scheme similar to that in Scotland so that his family can support themselves should anything happen to him. Many of those in Wales living with the effects of this tragedy do not feel that the current compensation scheme, which mirrors that in England, goes far enough. I hope that, today, we as Assembly Members have given a voice to constituents who’ve been affected by this terrible tragedy.