The afternoon session saw lively, interactive discussions on three crucial topics – the ongoing fight against hep C, ensuring user involvement is genuine and at the heart of services, and getting the sector’s key issues into the in-trays of our new crop of MPs.
HEPATITIS C – THE RACE FOR ELIMINATION
The conference theme of ‘Stronger Together’ summed up the fight against hepatitis C, Deborah Moores of Humankind told the conference. Her organisation was part of the Hep C Drug Treatment Provider Forum, which was hosted by Gilead Sciences and also included NHS England, the Hepatitis C Trust, and the hep C leads from the country’s main treatment providers. ‘We’ve all got the same goals, so we’ve pooled our resources, our expertise, our methods, our policies and our ways of doing things so we can do it stronger together. We all have that passion and we’re all very vocal, so sometimes we need NHSE and the Hep C trust to calm us down a bit.’
Streamlined pathways
Sharing, integration and equality were the key themes when working together, she told the conference. Other organisations involved included the operational delivery networks (ODNs) who were trying to get as many people as possible into treatment, and other pharma organisations, said Deanne Burch of Hep C U Later. ‘We’re trying to get as much coverage as possible and streamline those pathways, so if you go into one drug service you’re going to get the same level of care around your hep C as you would anywhere else.’
Last year the forum won the Health Service Journal’s best healthcare analytics project award for its work with data, said Moores, thanks to its focus on developing shared solutions to common problems. ‘We’ve all got the same challenges. We’re trying to test everybody so what we need to know now is where are the places we’re missing and what cohort should we be talking to? It’s all about collaboration and networking.’
The forum had established elimination criteria to make sure that everyone accessing services who’d put themselves at risk was offered, and received, a test. ‘And if that test is positive and they need treatment, for us to be able to facilitate that treatment for them as effectively as possible.’ It had also developed a set of elimination standards for all treatment providers, she added. ‘They’re not easy to achieve, and they’re not meant to be. We don’t want something that’s just throwaway – we want something that people have striven hard to get to.’ Around 84,000 people had been treated since the middle of the last decade, with a 37 per cent reduction in deaths. Eighty per cent of the treatment provided was to the most deprived half of the population, she added, and there were now 15 prisons that had achieved micro-elimination.
‘We have a shared set of beliefs that we try to live with as much as possible,’ said Burch. ‘And we’re in this because we do believe it’s possible to eliminate hep C as a public health threat in England.’ There was still a real issue of reaching people who were not coming into drug services and offering them a test, however. ‘We need to make sure they’re aware of the risks. So tell us where we need to go, and what we need to do.’
The Hepatitis C content was supported by Gilead’s sponsorship of the event.
MEANINGFUL ENGAGEMENT
User involvement should be the ‘DNA and the heartbeat’ of services, said Nic Adamson of Change Grow Live. ‘It’s just the right thing to do. But it also improves outcomes – there’s a raft of evidence that shows people have a better experiences and outcomes when they feel heard, are directing their own care and are given the opportunity to make things better.’
It also helped to improve service delivery, she stressed. ‘Speaking to those who know best what they need, what’s worked well and where there are shortcomings is a far faster route to better service provision than anything else.’ It was vital to direct scarce resources to the right places, she pointed out. ‘The level of need is only likely to go one way, and that’s up. So we have to ensure those resources are going to what works and what matters. It’s not only the right thing to do, it makes a difference – so my ultimate question is why would you not do it?’
While it was rare in the field to meet anyone who didn’t agree with doing it, at the same time it ‘hadn’t significantly grown since the days of the NTA’, she said. ‘I want to hear about the practical things we can do to support it to flourish and become more meaningful throughout the sector.’
Be the change
All recruitment processes at Change Grow Live included a service user panel, up to and including the most senior positions, she told delegates. ‘It isn’t lip service. If our service user panel says they’re not right for us, then they’re not right for us. And I’m really proud of that.’
The organisation also supported people to move into its employment, with strong training and volunteering pathways, and staff surveys suggested more than 40 per cent of the workforce had lived experience, she said. ‘We all know that overdose is the leading cause of preventable death for opiate users, and we all know that half of those who die have never been in treatment. Peer activism helps us get life-saving treatment, support and harm reduction advice into the hands of the people most at risk. It changes minds, and it changes lives.’
Challenges remained, however. ‘Everyone wants to do this and believes in it, but everyone’s really busy. So we often find that without that passionate local champion it doesn’t reach the top of the list.’ There were also criticisms that voices were not representative enough. ‘I hear that, but it shouldn’t be an excuse for doing nothing,’ she said. ‘We have to start somewhere, and only by showing the difference that can be made can we encourage the other voices to get involved.’
It was also essential to harness the experience of the people not in treatment, she stressed. ‘I don’t believe they don’t know where we are. I do believe they’re making legitimate choices to not come through our doors, and I’m really interested in hearing the reasons why. So we can do something about it.’ But it was also vital to celebrate more, she told the conference. ‘All of the changemaking activities that are happening are an inspiration, and I still don’t know the half of it. So we need to tell the stories, we need to share the practice, we need to work as one and we need to be open and honest with each other about where we’re struggling. And we need to be ambitious and relentless.’
POLITICAL PERSUASION
‘One of the good things about being around for a long time is you don’t get too excited about politicians,’ Forward Trust CEO Mike Trace told the conference’s final sessions. ‘I’ve seen an awful lot of ministers and governments come and go. But it also means you don’t get too depressed when things are a bit rough.’
To provide some perspective he could ‘tell you that no one in the Labour leadership, in Keir Starmer’s office, or any other ministerial office is coming into government saying, “My priority is to reform drug policy” – or to open consumption rooms or change the Misuse of Drugs Act. But in a way that’s a good thing. It’s a blank sheet of paper, and it’s why it’s important for us to be getting our voice out there to these people.’
The new set of ministers coming into their jobs would want to do the right thing, however. ‘They’ve got a lot of problems to solve, but they’re approaching that with a problem-solving mindset. That fits with our world and our sector – so we’ve got a much more open ear than we’ve had for a number of years.’
While home secretary Yvette Cooper was a pragmatic, competent problem solver and health secretary Wes Streeting had ‘good instincts about this issue’, neither had hard and set opinions on the subject – which made it all the more important to try to influence them. Justice secretary Shabana Mahmood had also said encouraging things about the drugs issue, but perhaps even more interesting than the cabinet ministers were those ‘on the edges of that’, he explained. These included people like Angela Rayner, Jess Phillips and the new prisons minister, James Timpson – a ‘very smart, very impressive guy. So it’s going to be very interesting and I’m very hopeful that some of the rubbish policy, rubbish funding and rubbish way of managing prisons might actually turn around.’
Usually when new prime ministers gave their first speech it was all ‘motherhood and apple pie’, he said. ‘You definitely don’t talk about prisons. But Keir Starmer did, and that I’ve never seen before. So we’ve got a prime minister who’s saying the prisons crisis has to be solved and we’re going to confront it, rather than pretend it’s not happening and try to stay out of the Daily Mail.’
Make your voice heard
The fact that very few of these new ministers were saying ‘this is the manifesto commitment, we’re going to do this, this and this’ was what provided the vital opportunity to influence what Labour’s problem-solving, pragmatic policies on these issues would be over the next few years, he said.
The drugs market was the main reason that prisons were currently ungovernable, he told delegates. ‘If you don’t address the drugs market in prisons you’re not really going to get on top of it. They know that – what they do about it, we’ll wait and see. We also have a drug-related deaths outrage in this country, which is getting worse as we speak. I’ve been trying to say to any politician who’ll listen for the last six months, “This is something you’re not going to be able to brush under the carpet – or you morally shouldn’t be able to”. So I’m hoping that we may be moving into a period where some of that squeamishness around harm reduction gets out of the way, and some good practical life-saving policies are supported. That’s going to be a tougher call, and that’s what a lot of you are going to have to be pushing for.’
The new parliament had 650 MPs, 330 of whom were there for the first time, he pointed out. ‘It’s first day at school for over half of them. They’re all excited but they’ve no clue what’s going on, so it’s a great opportunity for advocates. The ones who have an interest in homelessness policy, criminal justice policy, drug and alcohol policy – they’re a new generation and they’re open to be interested in your subject. So, particularly if you’re part of a LERO, a local community group or a local service, this is the time to get out and engage with your new MP. Get to those surgeries, talk to them about what you do, invite them to your projects and events, and get their support. Get in there before everybody else.’
Watch the video footage of session three here:
DDN’s 2024 conference was dedicated to harm reduction activist and DDN conference team volunteer Lee Collingham
WORDS FROM THE FLOOR
‘I got tested for hep C in prison and had a bit of paper through the door saying “you’re positive”, then the door slammed again. It didn’t bother me because it was something I thought everybody got. I’ve been in this field for a long time and I know all about the percentage testing rates, the increasing – but still not perfect – levels of treatment delivered, but something that’s missing is information about what happens when you get hep C. In the drug-using community nobody says, “This will knock 20 years off my life” or “I’ll probably die of this.” There was always very little information about the consequences of hep C.’ Alex Boyt
‘Our local MP is fantastic – she’s taken what we’ve said and quoted it in Parliament. So I do recommend that people get connected.’ Delegate
‘Devolution in the English context seems to be big theme, in terms of bringing the mayors together, so would it also be useful for drug agencies to think how they can influence a more devolved England?’ Martin Blakebrough, Kaleidoscope