some of the most marginalised,’ said London Assembly member Susan Hall. ‘So
it’s a travesty that it wasn’t part of the mayor’s recent report into health
inequalities. It shows what a battle we have on our hands to get people to take
notice.’ There was growing momentum from more and more organisations to
take action, however, but this would need a ‘huge amount’ of joined-up working
across often complex networks.
I
n terms of the practicalities of operational delivery networks (ODNs)
meeting their HCV targets, Dr Katherine Morley of the National Addiction
Centre at King’s College shared the results of an evaluation project on
identifying obstacles. Among the main themes that emerged were degrees
of confusion over who should be meeting Public Health England (PHE)
reporting requirements, as well as issues around referrals to secondary care
as a result of service user drop out, often related to time lag. Missing data was also
a problem, the result of providers having different electronic patient record systems
– ‘an endemic problem across the NHS’.
Chair of the British Viral Hepatitis Group, Dr Andy Ustianowski, described the
methods used in Greater Manchester’s HCV elimination programme, and the
lessons learned. The first step was to ‘get an idea of what you’re dealing with – the
numbers’, he said, and also to ‘get rid of preconceptions’. The next step was always
to ‘contemplate the simplest model’ and work out how to get people to engage for
minimal cost.
‘Missing data is an
endemic problem across
the NHS.’
Dr Katherine Morley
‘It’s about supporting
services to be doing this
treatment themselves.’
Janet Catt
‘We have a cure for a
disease that kills
people, and we don’t do
it? That’s just insane.’
Charles Gore
‘Work out what needs to be done – what’s absolutely necessary and what’s
“nice”,’ he told delegates. ‘The “nice” might need to be sacrificed.’ The programme
was treating around 930 people a year, he said, using community pharmacies and
reaching out to treat people’s networks. ‘Before we treat them we incentivise
them to bring their network up for testing.’ Also useful were interrogation of
records, rapid prison diagnosis and treatment, and – just as importantly –
knowing when an initiative had reached its logical conclusion and should be
stopped. The programme was currently also scoping the possibility of testing in
primary care and A&E settings, he added. ‘Anyone who’s got a good idea, I’m
happy to shamelessly nick it.’
‘One of the things I feel in retrospect is why is it so difficult?’ said former
Hepatitis C Trust chief executive Charles Gore. ‘We have these drugs, they cure
people – so why does it seem such a struggle?’ In the 1990s, after his hepatitis C
diagnosis, he had only been able to find one support group, he said. ‘Everybody
was using heroin, and half of them were nodding out – it didn’t feel very
supportive.’ He had set up the Hepatitis C Trust despite having ‘no useful
experience’, as there was not a single charity for the condition. ‘It was very much
on-the-job learning. But I cared about people with hepatitis C, particularly those
who don’t have a voice.’
Although the charity had had to abandon its aim of only employing people with
a hep C diagnosis after it proved ‘way too restrictive’, it was still driven by the belief
that ‘people with lived experience are incredibly useful’, he said, with the role of
peers now central to the hepatitis C response in the UK.
Awareness remained a critical issue, and not just in this country, he stated. ‘The
big problem is that not enough people are diagnosed, and I’ve become a big
convert to the idea of screening. There’s now screening in drug services and prisons,
but we need to do more of it. And with the cost of the drugs coming down, it
means you can spend more money on screening and it will still be cost effective.’
There were now discussions about long-acting injectables for the condition, he
told delegates – ‘one shot and that’s all. It looks like that might be possible’, while
in the past NHS England’s rationing of drugs had been ‘appalling’ (DDN, April 2017,
page 20). ‘In my view that was simply because of the assumption that people with
hepatitis C were a disadvantaged group, and wouldn’t complain too much.
‘I truly think this is doable, and we’re beginning to see more and more countries
saying, “yes, we want to do elimination”,’ he continued. ‘We have a cure for a
disease that kills people, and we don’t do it? That’s just insane.’
‘There are lots of things yet to do, there are still some challenges,’ Dr Suman
Verma told the conference. ‘But we just have to keep on pushing harder.’ DDN
Read DDN’s guide, Hepatitis C and Health at
https://drinkanddrugsnews.com/ddn-wider-health-hep-c/
To view video footage of the event visit Jon Derricott’s YouTube channel at
https://www.youtube.com/channel/UCeHbriRIjC2pgUPt8HKp0tQ
www.drinkanddrugsnews.com
February 2019 | drinkanddrugsnews | 13
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