Lesley was 26 when she was given several pints of blood during the birth of her first son. She went home, tired but relieved, and went on to build a very successful business and great home life.
In her mid-forties, however, Lesley began to feel increasingly unwell and persistently exhausted. She visited her GP many times, but test after test came back negative.
“I think the doctors started to see me as hypochondriac; many were rapidly losing sympathy for me, and nobody realised how ill I felt. At my GP surgery you simply see whoever is available, so I rarely saw the same person. Whoever I saw would just look at my history on the computer, so it must have looked like I was there all the time with so many diverse symptoms.
One locum GP didn’t even look at me… she suggested it could be my imagination and offered me ‘antidepressants or nothing,’ suggesting maybe I was ‘just there for a sick note’. I was shocked. I explained I was self-employed and if I was sick I didn’t get paid, so I didn’t want a sick note – I wanted a diagnosis. I left with nothing and vowed never to go again, so for a long time I struggled on alone. I got so ill, I had to sell my business and couldn’t work at all”.
Then, in 2007, Lesley was listening to Woman’s Hour on BBC Radio 4. Jenny Murray was interviewing Anita Roddick, The Body Shop founder and patron of The Hepatitis C Trust, who had decided to speak out about her own experiences with the virus. Slowly Lesley’s years of confusion began to make sense: she too had had a blood transfusion at the birth of her eldest child, and her symptoms were almost identical. Once again she returned to her GP and this time asked specifically for a hepatitis C test, which came back was positive.
Lesley was staggered by the lack of knowledge her GP had about the virus, but having an explanation of her symptoms and proof that it wasn’t ‘all in her head’ was a huge relief.
“On the day I was diagnosed, it was a mixture of ‘finally here’s the answer to all these symptoms for all these years – I’m not imagining it after all!’ and ‘Oh my God! I’ve just been handed a potential death sentence!’
“I was frightened and desperate for as much information as possible. I asked a lot of questions: ‘Would it kill me? How long would it take to progress? What would happen next?’ They couldn’t answer any of them. They just kept saying I should see a specialist. I couldn’t believe how ill informed they were.
“Prior to treatment, I finally got a GP who was very compassionate and understanding. He has been brilliant and a real support, however he freely admitted that I probably knew more about the condition than he did. He also admitted that since my diagnosis, he had taken the time to research hep C on the Internet – on the same sites I was looking at!”.
Lesley completed treatment for the virus twice, the second time commuting to London for a drug trial. In autumn 2010, it was confirmed that the trial drug had successfully cleared the virus.
Lesley worked for The Hepatitis C Trust using her own experiences to train health professionals in recognising, diagnosing and managing the virus. She also recruited a team of over 150 volunteers across the country who work with her to improve awareness of hepatitis C amongst GPs.