Liver Buddies Case Study – Carol Powell-Williams
When Carol Powell-Williams first learned she had tested positive for Hepatitis C, it came in the form of a blunt NHS letter which also recommended she take an HIV test.
“The letter was so blunt that I was really shocked” said Carol, a mum of three, from Huddersfield. “And the recommendation to take an HIV test really shocked me. I was so upset. There were no offers of help or support in the letter, and I didn’t know what to do.”
Carol believed she contracted Hepatitis C, a viral infection that can seriously damage the liver and cause liver cancer, when she had a tattoo around 20 years’ previously. She believes the infection came from tattoo ink, which wasn’t known about at the time.
She is now clear of the disease after undergoing several years of treatment and is using her experiences to help people in West Yorkshire in a similar situation to the one she faced.
Carol underwent three rounds of treatment over a five-year period before being given all clear. She benefited from new medications becoming available but knowing her liver had been damaged, requiring lifelong surveillance, was emotionally very difficult.
“I have such personal experience of this, and it affected my entire life, causing a great deal of anxiety and stress that have remained with me. I feel very passionately that people need support and help and the ear of someone who has been through something similar.”
“I feel very strongly that there should be a clear support system linked to this level of lifelong surveillance. Whilst I really appreciate the health care and treatment I received, emotional and psychological support is lacking”.
“I know I can provide this help and support and am very excited about my new role.”.
Carol has been appointed Liver Surveillance Peer Support Lead, within the West Yorkshire Liver Care Operational Delivery Network (WYLCODN). As part of her new role Carol, offers peer to peer support, encouraging people to have liver health checks to help detect and diagnose liver cancer early when it is easier to treat, whilst also supporting anyone who tests positive.
The checks take place on our mobile clinic vehicle, affectionately known as O-liver. The vehicle is equipped with a Fibroscan machine, that travels around Leeds and West Yorkshire, including Bradford, Keighley, Wakefield, Halifax and Huddersfield, which is hosted by Leeds Teaching Hospitals NHS Trust. The WYLCODN is a managed NHS network for the treatment of Hepatitis C and other liver diseases and allows the teams to visit high-risk communities as part of a major NHS drive to catch more cancers earlier and save lives.
Following Carol’s induction in November 2023, she started to pre call patients in December 2023, so far, she has tried to contact 133 patients (up to Feb 2024), with the following outcomes:
- 84 patients were contacted
- 35 no contact could be made/No answer to call
- 13 incorrect contact information
- 1 already had a scan
Out of the 84 patients contacted:
- 82 attended their appointment which equates to 96%.
- 2 patient DNA which equates to 2.6%.
Overall, out of the 133 patients booked since the Carol started 112 attend their appointment which equates to 84.21%.
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Testimonials
The treatment didn’t really give me any side effects as sounds better than injections and I’m glad I’ve done it as now I’m Hep C free.
Bradford patient
Keep you informed and easy to talk to as well as respect privacy.
Bradford patient
All nurses and reception are very kind and welcoming and do their best to inform us about everything useful for the treatment.
Patient
Kept me fully informed about my progress, spoke so I could understand everything clearly.
HMP Leeds patient
Being able to chat openly with staff and not being judged.
Bradford patient
Had no problems and received wonderful service.
Leeds patient
The staff are very friendly and treated me with respect.
Leeds patient
The nurses are very nice. I’ve been in and out of hospital for 3 years but never heard of Hep C. They are kind helpful and didn’t judge.
Patient
All the staff caring and are sympathetic to the patients.
Leeds patient
The nurses, doctors and staff have been absolutely fantastic, reassuring and helpful. Thank you!
Patient
Very supportive staff, I feel better finishing my treatment
Leeds patient