The National Expert Citizens Group’s blueprint for improved dual diagnosis support
Over the past three months, our National Expert Citizens Group[1] (NECG) has been partnering with the National Health Service England (NHSE) and the Office for Health Improvements and Disparities (OHID) to inform their joint plan on dual diagnosis. The NECG’s objective was to provide NHSE and OHID with insights based on the lived experiences of our members, gathered through local and regional consultations with different NECG groups. Today, the NECG presented their key findings and recommendations.
Dual diagnosis, which refers to the co-occurrence of mental-ill health and problems with drugs and/or alcohol is an issue that our NECG members are intimately familiar with. We recognise that these issues often lead to contact with the criminal justice system, especially when left unaddressed. As advocates for prevention, we aim to change systems and services to ensure that individuals receive support before they have to go through the revolving door of crisis and crime.
The NECG members particularly emphasised the many hurdles they have faced when accessing services, often due to rigid systems, high thresholds, and a focus on clinical diagnosis that leaves people without adequate support. They often found themselves bounced between services, forced to repeatedly recount their traumatic stories, or turned away altogether.
“Thresholds mean preventative support isn’t provided. I don’t want to hit a crisis point where I am using again when I can spot the signs, I need support earlier than that. There is a misunderstanding of just how quickly it can get to a crisis point for someone with co-occurring needs. People need to be met with kindness, so you don’t end up on a merry-go-round”
NECG member
The root cause of this issue lies in the fact that programs and interventions addressing dual diagnosis are not designed and delivered with lived experience at their core. As a result, services often feel inadequate for individuals experiencing multiple disadvantage. A solution identified by NECG members was to embed peer support across the board, providing those accessing services with an independent person who can guide them through the system, advocate for them, and bridge the mistrust that arises from years of being turned down by services—an experience frequently faced by people with multiple disadvantage.
“I think people should have a peer mentor, a navigator who is trauma-informed and that advocates and sits in the middle between the practitioners and the individual to support both groups.”
NECG member
A change of approach, focusing on the person and their strengths, is also needed to ensure that co-occurring needs are addressed effectively. NECG members have encountered numerous examples of poor practice, ranging from a lack of empathy or trust to feeling stigmatised, long waiting times, confusing referrals, and time-limited support. These challenges are further exacerbated for specific groups, such as women, those from the LGBTQ+ community, or with neurodiverse conditions.
“I felt stigmatised for using drugs and being a mum – I heard the nurses talking about me – it leads to shame and not wanting to ask for help.”
NECG member
“As a transgender man, I had to ‘out myself’ to get support. The problem is then all of my issues are perceived as related to gender, when they are not…”
NECG member
Too often, time constraints prevent staff from building lasting, trusting relationships with those using services – but our NECG members tell us this is key to the success of the intervention. For them, the most effective interventions demonstrated flexibility, incorporated lived experience in the workforce, were not time-limited, and took a holistic and multi-disciplinary approach – all of which should be the benchmark for developing integrated approaches that genuinely address multiple disadvantage.
“They (staff) tend to have lived experience, and they are not trying to fix me. They are giving me the tools to fix my life with the right support, which is long-term – not the kind that gets rid of you after 6 months…”
NECG member
“An ideal service would have a team of people that worked with you to plan your journey through treatment together. It would have your drug worker…, a psychologist supporting you with your mental health, a housing worker planning to get you into suitable accommodation, and a peer mentor who could … help you get involved in things … [like] fun activities.”
NECG member
We stand ready to work with OHID, NHSE and other key stakeholders, to embed these principles into practice and ensure better support for those with dual diagnosis, developing smarter, co-produced solutions. Preventing people from being bounced from one service to another by providing the right intervention, at the right time, is what is needed to reduce the strain on services and, most importantly, support people to thrive.
“There are a lot of challenges with how services are working. Over the next couple of months, we will set a couple of workstreams to think through some of these issues and make the system more collaborative. A lot of the things we have heard today will be very useful for these workstreams.”
NECG partner
“I must say, it’s really inspiring to see so much insight into how the system works and where the root problems are. It’s truly an example of how lived experience can shape the future in a way that reduces the gap between service users and services.”
Event attendee
[1] The National Expert Citizens Group (NECG) acts as a representative group for people facing multiple disadvantage, to make sure those with lived experience are able to shape the systems and services that directly affect them.
The NECG holds regular consultations with key Government departments and agencies, civil servants and services on issues related to multiple disadvantage. If you’d like to discuss opportunities to work together, please email Sean at sean.mullen@revolving-doors.org.uk.
