Many people experiencing homelessness, drug and alcohol problems, mental ill health, and repeat offending die early because they become desensitised to death through suffering vast loss and lack of hope, new research has revealed.
People with multiple and complex needs experience severe health inequalities and are more likely to die than the general population – deaths are almost seven times higher on average for men and 12 times higher for women. However, little is known about why, and how to prevent this.
To better understand this, researchers from Fuse, the Centre for Translational Research in Public Health, worked in collaboration with Fulfilling Lives Newcastle Gateshead and its peer research network to explore why so many people with multiple and complex needs are dying and dying early, to find ways to identify those at risk and to prevent unnecessary deaths in the future.
The unique research is directly informed by people with experience of multiple and complex needs, and those working to support them in the health, social care and voluntary sectors in Newcastle and Gateshead (North East England) through focus groups and a regional event.
They found that those with lived experience of multiple and complex needs had vast experience of loss and this, coupled with a lack of hope that things could change for the better, meant they had become desensitised to death.
The study also found that mental ill health when combined with drug and alcohol problems, and poor coordination and collaboration between support services, increase vulnerability and the risk of people dying prematurely.
The report identifies windows of opportunity when someone with multiple and complex needs should receive targeted support through critical life events, such as bereavement and relationship breakdown, and significant transitions, such as completing treatment, release from prison, or service discharge.
It recommends that early and premature deaths of people with multiple and complex needs could be prevented by:
- Introducing holistic, person-centred approaches
- Building a sense of community for those who feel excluded from society
- Improving connections and support across the health and wider care system
- Placing the focus on prevention, particularly in early childhood; and
- Exploring opportunities to support carers, providers, and families.
Angela Broadbridge, Research and Evaluation Lead for the Fulfilling Lives Newcastle and Gateshead programme, said: ‘This research was hugely important to the Fulfilling Lives Newcastle Gateshead team, having experienced the collective grief of the deaths of 10% of our client cohort within the first six years of our National Lottery Community Fund programme.
‘Our team wanted to understand high death rates amongst the people we support on the programme and our Experts by Experience Network wanted to take the lead on exploring this issue within their own community.
‘This funding and the important partnerships formed made for a sensitive study of a traumatic topic and the experience of working alongside Fuse researchers has also been an important stepping stone to other co-produced research projects and we look forward to building on these relationships into the future.’
Dr Emma Giles, Reader in Public Health Behaviour Change at Teesside University and co-lead of the Fuse Behaviour Change research programme, said: ‘This research clearly highlights the inequalities experienced by people with multiple complex needs.
‘It is vital that support is offered from across health and social care in a collective way. This should recognise ‘windows of opportunity’, to best provide support at a point that is useful and timely for people.
‘We were privileged to work with Fulfilling Lives and the peer researchers with lived experience on this unique project, to jointly draw attention to and support those with multiple complex needs.’
Dr Sheena Ramsay, Clinical Senior Lecturer at Newcastle University and lead of the Fuse Healthy ageing research programme, said: ‘People with multiple complex needs experience disproportionate levels of ill-health and mortality.
‘This piece of work provides important insights into addressing these high death rates, particularly, through early intervention at critical life stages and transition points, and through person-centred holistic approaches.
‘The work has been especially valuable in co-producing research with ‘Experts by Experience’, and creating meaningful and mutually beneficial partnerships.’
This work was funded by a small seed grant from Public Health England as part of the Research Hub Initiative. The project design and methodology were developed with a group of Experts by Experience (peer researchers) and frontline staff who work for Fulfilling Lives Newcastle Gateshead. Both groups expressed concern about high rates of death among people with lived experience of multiple and complex needs and felt this was a priority area for research.
Academics from Newcastle and Teesside Universities collaborated on the project through Fuse, the Centre for Translational Research in Public Health, and it is also linked to the Health Inequalities and Marginalised Communities arm of the National Institute for Health Research (NIHR) North East and North Cumbria (NENC) Applied Research Collaboration (ARC).