Interview with Samantha May from the Hepatitis C Trust
Our ninth annual Winter Auction will once again be donating proceeds to the Hepatitis C Trust. As this auction will specifically be supporting the Hepatitis C Trust's helpline, we sat down with Samantha May, the Helpline Information and Support Service Manager at the Trust.
Can you tell us more about a typical day on the Hepatitis C Trust's helpline, and how it's changed over the years?
There is never a typical day! In the early years, the majority of our calls were from people who had injected drugs back in the 60s, 70’s, 80s and 90s (and even if just once, that is the biggest risk factor for hepatitis C). The treatment available, up until around 6 years ago was brutal, with lots of side effects, only a 50/50 chance of success and between 6 and 12 months in duration. Much of our work at that time was taken up with encouraging people to keep going with it, and maintain a healthy lifestyle, so they had the best chance of success. If it didn’t work, there were no other options.
Now, the majority of our callers are from those who received infected blood or blood products before the early 90s when blood wasn’t screened, or their family members. We can encourage people to get tested, support them if they have just been diagnosed, answer all their questions, advocate for them in accessing the payment schemes that were set up to support them, offer ongoing emotional support, including to those who are now terminally ill and much more.
We also have queries from the general public, researchers, medical professionals and many others.
In total we have received over 63000 calls since we started, and have taken 4000 this year alone, the majority of whom are from the infected blood community.
What is the Infected Blood Scandal and how has the Hepatitis C Trust supported those affected?
It has been described as the “biggest treatment disaster in the history of the NHS”. Around 30,000 people received blood products, or blood transfusions that were infected with HIV and/or hepatitis C before 1991. Many have already died and others continue to die at a rate of 1 every 3 or 4 days. Many more have had their quality of life and overall health greatly impacted for decades. They have been stigmatised, traumatised, isolated and suffered considerable psychological distress, on top of the physical health consequences these infections and the older treatments for it caused them.
And there are still an unknown number who have yet to be diagnosed, and due to decades of infection, are often then found to have the long term consequences - cirrhosis, liver failure, or liver cancer. Although there are now safe, quick and easy treatments available to cure hepatitis C, there are very limited options for managing these other conditions. Sadly, we hear from 2 or 3 people every month who have only just been diagnosed but who received infected blood before 1992.
Our helpline, is the only designated, and most importantly, peer led service that provides support and information to them. The fact that we have had hepatitis C ourselves, enables people to open up and have trust and confidence in us. This is absolutely key, not only as it is such a stigmatising condition, but also as so many have lost faith and avoid/or delay engaging with the NHS for ongoing health concerns as a result of their experience.
Has the helpline ever been funded?
Since it launched in 2004, up until 2019, we were very fortunate for our helpline to be supported by a wide variety of charitable trusts and foundations. However, over the last 10 years funding for UK helplines has all but disappeared. Our helpline now operates out of the Trust’s core funding, meaning that donations and fundraising events are really important in keeping us going.
We have now reached a point where the volume of calls we take and the ongoing support we provide, far exceeds our capacity. Fundraising through Art on a Postcard is essential to help us continue this vital work.
Can you tell us more about how the proceeds of this auction will support the helpline?
Put simply, it will help enable us to continue providing this much needed service.
There is simply no other organisation in the UK providing the support, information, advocacy, signposting and practical help, for those who were infected, or affected (widows, widowers, parents who lost children and children who lost parents) as a result of contaminated blood.
Nor is there for those who were infected in other ways.
What are your favourite pieces in the auction?
A truly impossible question! There is such an incredible selection in this auction.
Let’s just say I will be keeping a close eye on the bidding of the following artists, in no particular order – Hetty Haxworth, Julian Hicks, James Russell, Nadine Faraj, Elsa Rouy, David Micheaud, Angie Hunt, Luke Chueh, Alison Jackson and Joe Berger.
These are just some of my personal favourites and I would love to have any one of their amazing contributions.
