Without treatment for their hepatitis C, the health of patients can deteriorate rapidly. And with NHS England’s 2025 elimination deadline1 looming, the time for action has come. We spoke to Hepatology Nurse Specialist Mark Cassell about the pioneering outreach work his team is doing with hard-to-reach patients – and its continuing success.

See more about Mark Cassell’s work and his team’s progress here

A picture of desperation 

“The first patient I ever saw in drug services was the same age as me at that time, and he did not have a roof over his head. He had no family support, he was alcohol dependent, he had significant evidence of cirrhosis at 27 years old. He was an intravenous drug user living on the streets, and the last hot meal he’d had was 5 days before.”2

This was Mark Cassell’s introduction to working with marginalised hepatitis C patients. Having come from outside the service, Mark took over HCV outreach at Barnsley Hospital in December 2015 with the aim of improving the service – and he had to learn quickly to do it.

No more simple cases 

Barnsley was a challenging area to begin his work. Compared with England as a whole, local HCV prevalence is almost double. Infections peak among 25–44 year-olds but a substantial proportion of older people are also affected.2

The vulnerable people Mark’s team focus on bear the brunt of HCV. They suffer from a range of problems – from substance abuse and alcohol dependence to homelessness and mental health issues – and many have disengaged from traditional healthcare services.2 So how can medical teams best support HCV elimination among this group by 2025?

Fixing a broken system 

Once Mark understood the system, he made a plan to improve it: search in the community for patients who were undiagnosed, and work to re-engage those already diagnosed but, for various reasons, still untreated.

At the time, outreach services were delivered through secondary care, and fairly limited: three half-day clinics per week via Barnsley Hospital, which were not reaching enough patients. “On average we were getting about eight patients booked on to clinics, and sometimes maybe two, sometimes no patients at all, were turning up,” he says.2

Services were not meeting users’ needs, and the numbers reflected this: of 194 referrals in the year to July 2017, around 60% did not attend their appointment – which not only had cost implications, but also further demotivated medical teams. Worse still, only 20% of diagnosed patients were making it on to treatment.2

“I realised that we needed to do something to try and identify what the barriers and challenges were, and why these patients weren’t attending,” Mark says.

His research into patients and their needs uncovered many obstacles; some were logistical (such as distance to hospital and cost of travel) but others were more personal. When patients made it as far as approaching services for testing or treatment, they often experienced the stigma, discrimination and prejudice associated with HCV. Some doctors would not refer them unless they stopped using drugs, while others seemed to believe that because patients didn’t care about their overall health,
they would not care about their HCV – which, Mark believes, is often untrue.2

Building a better service in primary care

Mark’s first key move was to change the delivery setting for HCV screening from secondary to primary care outreach. This boosted attendance from 44% to 57%– but still left room for improvement. What more could be done to engage the disengaged?

“We still needed to simplify the pathways and facilitate access,” Mark says. “So we set about changing services by building them around patients rather than hospitals.”

The team began to offer 1.5 clinic days per week for HCV testing and treatment across 2 community sites and managed to remove the requirement for an ultrasound scan – cutting time to treatment from 2 months to just 2 weeks.2

Patients prescribed opioid substitution therapy (OST) were offered dual appointments with their next OST script; and a one-stop-shop was established to facilitate and coordinate best-practice care. Importantly from a funding perspective, the NHS HCV tariff could be claimed as service ownership still fell within secondary care.2

Engaging with patients, improving outcomes

Mark believes that for this patient group, reducing complexity and gaining trust are the keys to improving outcomes. So the team further simplified the care pathway and facilitated access to testing and treatment. This involved winning patients’ trust, educating them on hepatitis C, improving testing and increasing visit frequency – then linking treatment to each patient’s individual motivation to support adherence.2

Reducing complexity and gaining trust are the keys to improving outcomes

To communicate the seriousness of the condition and need for treatment, he advises services to adapt to the individual patient sat in front of them.

 

“There is a set template on the information I want to get across, the necessity of the risk of liver cancer, the risk of cirrhosis, etc., but then you have to portray it in a different way for some people to get an understanding of it really, some more simplified than others.”

Overcoming service limitations 

Despite progress towards HCV elimination around the UK, local challenges within services often still exist. However, many may not be insurmountable. For example, in some areas where FibroScan is not available, FIB-4/APRI/AST/ALT scores could still be used as an alternative measure of liver fibrosis where required.2

Using today's treatments 

The availability of direct-acting antivirals (DAAs) has transformed chronic HCV management.3 Mark believes treatment should be tailored to each patient after considering such factors as pill burden, drug-drug interactions (DDIs), availability of food (which some treatments require), and, particularly for patients with no fixed address, packaging portability.2

The team is now looking to tailor DAA treatment accordingly (in line with WHO4 and local recommendations) to help eliminate delays awaiting genotyping results, as well as offering treatment alongside supervised OST consumption to support compliance.

A practical approach 

Introducing these high-cost medications also requires new thinking around how to manage them for patients. In the Barnsley model, a nurse specialist transports medication from hospital pharmacy to clinic in waterproof lock-tie bags. (Homecare services can also facilitate medication pick-up from community pharmacy if necessary.) Bags are logged in and out within the pharmacy to enable potential return, helping avoid treatment wastage where patients fail to start, or discontinue.2

 

Issues around blood testing – the practicalities and also patient objections – remain. So the team has worked to overcome obstacles by removing the need for on-treatment blood testing. In conjunction with use of pan-genotypics, this has removed another barrier to success.2

The results 

The outreach plus dual script approach dramatically improved appointment attendance, which grew to 82% – double that of traditional secondary-care referral system.2

Of 145 cases who tested positive for a blood-borne virus (BBV), 128 then attended clinic – an attendance rate of 88%. There were also remarkable rises in treatment initiation and completion.2 Of the 128 seen in-clinic, 101 patients started treatment - with 73% of them completing treatment (a three-fold increase on the previous percentage) and a further 8% are still being treated.2

HCV elimination turns lives around – and goes even further 

While the numbers are impressive, it’s worth remembering that behind them are success stories for the many patients who have benefited. One recreational drug user, who failed to take treatment for a leg ulcer, still completed treatment for his HCV and was cured. He has now also re-started ulcer treatment and has seen significant improvement.2

Perhaps even more encouraging is the case of a longstanding IV drug user, who was also drinking 10 cans of super-strength beer every day. Despite a history of depression and decompensated cirrhosis, he achieved SVR24, completed a detox programme and abstained from alcohol for 3 months – which has significantly improved his health and quality of life.2

“It really shows testament to them that they engage with this treatment pathway, that they could stick with this," says Mark.

Challenging perceptions to change the game 

Every day, Mark’s team are challenging the perception that the marginalised cannot or will not engage with HCV treatment. The empty clinics of the past now welcome many more patients2 – all thanks to hard work and open minds.

“For these people that have all these struggles going on, they are still managing to get through this treatment because they want to be free of Hep C, they don’t want to be associated with it,” says Mark. “It has changed my way in which I approach these patients.”

The 2025 target is real and ever more pressing. Every patient counts. However, if healthcare teams all play their part, conquering hepatitis C for good has never been more achievable.3,4

Find out more

Watch the video and find out more about Mark Cassell’s work and his team’s progress here

This video was produced and funded by Gilead Sciences Ltd in collaboration with Mark Cassell. The views expressed in this video are Mark’s own and reflect his personal experiences.

Abbreviations

ALT = alanine aminotransferase; BBV = blood-borne virus; APRI = aspartate aminotransferase-to-platelet ratio index; AST = aspartate aminotransferase; CCG = clinical commissioning group; DAA = direct-acting antiviral; DDI = drug-drug interaction; FIB-4 = fibrosis-4 index; HCV/Hep C = hepatitis C virus; IV = intravenous; OST = opioid substitution therapy; SVR24 = sustained virologic response at 24 weeks; WHO = World Health Organization.

References

1. NHS England. NHS England sets out plans to be first in the world to eliminate Hepatitis C. Available from: https://www.england.nhs.uk/2018/01/hepatitis-c-2/2.

2. Mark Cassell, personal communication.

3. World Health Organization. Global Hepatitis Report, 2017. April 2017.

4. World Health Organization. Global Health Sector Strategy on Viral Hepatitis 2016–2021. June 2016.

 

This article is fully funded and developed by Gilead Sciences Ltd.

HCV/UK/19-09/MI/2153 • Date of Preparation: March 2020