Helping people get help
Fulfilling Lives works with people in Newcastle and Gateshead with multiple and complex needs, such as mental ill health, drug misuse and homelessness. Many of these people are excluded from the support they need from various providers, and Fulfilling Lives works to help users navigate these services while also trying to change the system into adopting a more person-centred approach.
Ray Middleton, a System Broker and project leader for Fulfilling Lives, points out that people with multiple complex needs might find it difficult to ask for help, or even to accept help that is available to them. “Although you might be offered a place in a homeless hostel,” he explains, “you might find it difficult to have safe relationships with other people who are in the hostel, and so you might end up being evicted or you might feel quite frightened so you might leave yourself and go and live in a tent for a while.”
As well as working with individuals with multiple and complex needs, Fulfilling Lives works with the organisations which aim to help. Ray explains how these services often find it difficult to meet and engage with this particular group of people.
The eight-year programme is supported by the Big Lottery Fund, and is one of a number of similar programmes across the country. 13 service navigators “build up relationships of trust with the clients, and then, as the name suggests, navigate them into the services that are out there.” This might involve going with clients to medical appointments or helping them to sign up to support groups.
Some of these service navigators have lived experience of the kinds of problems their clients face, and Ray believes this makes them especially valuable to the Fulfilling Lives programme.
He is interested in capturing these experiences and using them to help services better understand the issues affecting their users. He has even started to film groups and individuals talking about their experiences. “I particularly want to value the voice of people with lived experience, because sometimes that does get a bit ignored or not given as much weight and value,” he says, adding that this could help to improve services.
“You might be puzzled why your client’s not asking for help, for example,” he explains, “and you might be busy or a bit stressed so you’re thinking ‘oh, they’re not bothered’. But actually, if you reflect on this, for some people it might be that they feel it’s difficult to ask for help. So maybe there may be a different way that you can react and offer the service to clients to be mindful of the fact that more than the average person they might find asking for help more difficult.”
After coming in to Open Lab to present his work as a lab talk, Ray started working with Andy and Jay, who suggested using an app to record these experiences. This way service users could listen back to their thoughts, and potentially share their recordings with friends, relatives or care workers.
In addition, an app could allow users to tag audio to identify key themes and make connections between different audio recordings. Ray explains: “For example, if people are talking about self-harm, and why they self-harm, you might be able to then use the technology from Open Lab and what Jay and Andy are developing to just listen to the bits that are about self-harming if that’s what you’re interested in.”
Ray sees this potential app as a way to help build a community around people with multiple and complex needs and help service providers better understand the issues their clients face.
There is also a wider aim at Fulfilling Lives. On top of helping vulnerable people navigate the multiple and often complex services available to them, system brokers such as Ray look at obstacles within these existing services and ways that these can be overcome. “Changing the system is a tall order to have on your job description so we’ve had to kind of narrow that down a bit,” Ray says, with each system broker focussing on a particular area of “the system”.
This is no simple task. “It’s difficult to change for individual clients, but it’s also difficult for services to change,” he explains. “They’ve got a traditional way they’ve been trained and deliver services, and change can be a bit scary for staff and managers as well as for clients.” Fulfilling Lives also helps services change in a way that is evidence-based and reflective.
System change, possibly with technology such as an experience-recording app, is the key ambition for Ray and Fulfilling Lives. “The ultimate aim is a better service for people with multiple and complex needs. For years they may have gone in and out of prison, or sleeping homeless, or psychiatric hospital, maybe to little effect. We want better outcomes for these people instead of them dying 20 years sooner than the average person.
“We want them to be able to get better.”
Author: Mark Sleightholm