‘Improving Lives’ (IL) (formerly Integritas) is a small, independent charity that delivers both one to one case support and advocacy services to adults with complex health and social needs within the city of Nottingham. The service was formed as a community interest company in November 2006 and became a registered charity in February 2012. IL is led by a Board of Trustees, which is made up of a mixture of mental health service users and professionals. Working for the charity are five support-workers (including two social workers), highly committed to providing person-centred, compassionate support.
Their message and aim is clear: to provide free one-to-one support for some of the most vulnerable adults across the city of Nottingham and work towards current policy aims to reduce health inequality. All of the people whom Improving Lives work with have mental health issues or learning difficulties, often undiagnosed, and come to attention either due to repeated calls to emergency services or through instances of anti-social behaviour.
Fundamentally, Improving Lives promotes individualised, wide-ranging case support and services for people, in order to promote a more effective way to empower individuals and the problems they face in society. In recognition of the complex and fluctuating nature of mental health issues and complex needs, the charity has a broad focus and is striving to promote this model of pragmatic support in the community in order to bridge the gap (and catch those who fall in) between ‘single-issue’ service provision and individualised services.
I volunteer for Improving Lives one afternoon a week, as a befriender to an individual (let’s call him ‘Keith’) living in Nottingham who has a recent diagnosis of autism, complex social and personal needs, no family and no one to help with day-to-day activities that he sometimes finds challenging. We usually grab a cup of tea and talk about 1950’s rockabilly music – a valued weekly step away from PhD writing to see how Keith is (and what’s going on in the outside world generally). However, for the people working all day every day to keep the charity afloat, raise awareness, as well as provide support services, things are tough, and largely unpredictable. The service is small and relatively low profile (although some publicity has been achieved with a recent spot on BBC East Midlands today and in the Nottingham Post ), with insecure funding. Improving Lives is not big enough to dedicate resources to fundraising, and in the past some charitable funders have refused support since the work undertaken and services offered are considered to be in need of delivery or funding by statutory services. The majority of costs for the last two years have come from a combination of NHS and Nottinghamshire Police Commissioner resources. It’s not yet certain where, or if, further funding will come from to take the charity into 2017. There’s a lot of work to do, and potential for collaboration across sectors.
In keeping good to their word being tenacious and determined, independent and person-centred, Improving Lives undertook their own research with their clients to get their take on the value and impact the service has on their lives. They have run focus groups within their offices, as well as undertaken telephone surveys to assess client satisfaction with services, and their general wellbeing. The outcomes of this qualitative research largely reinforces Improving Lives as an integral source of advocacy, advice, and support with anything from paperwork, debt management, benefits, teaching new skills (e.g. IT) and befriending to help combat isolation. However clients feel that more can be done to improve socialising opportunities, and to improve staff knowledge of different physical and mental health conditions. These perceived gaps in the service are not met with surprise. This organisation has limited resources and strives to provide individualised, one-to-one support for people from potentially any background. Therefore it is an on-going challenge to meet both individual and broadly collective needs.
This research is important, and helps third sector services find out ‘what works’ for them and the community. However the dissemination of findings to academic audiences is challenging, particularly where fundamental ethical codes of informed consent, safely and securely handling data, and protecting participants from harm have undoubtedly been adhered to, but a formal application to a research ethics committee (REC) has not been made, either because of lack of resources to write applications or due to time constraints. The fact that included participants would have a current or background of mental illness or learning disability would be flagged in a research ethics committee application, as a vulnerable population group requiring additional protection and safeguards to research practices and potential power conflicts (which can take this blog post into an entirely different discussion, but for those interested see Bracken-Roche et al., 2016).
Academic research has been known to be retracted from publication due to lack of ethical approval, and the BMJ, for example, states that research submissions will not be considered for publication unless a statement is made that ‘the study obtained ethics approval (or a statement that it was not required), including the name of the ethics committee(s) or institutional review board(s), the number/ID of the approval(s), and a statement that participants gave informed consent before taking part’. There is an expectation to obtain ethical approval when undertaking any type of research with human participants, even if it’s not considered overly intrusive, and this principle rests on those laid out by the lynchpin of ethical guidelines, the Declaration of Helsinki, the principles of which are implemented into domestic legislation and policy (for us, the upcoming EU Clinical Trials Regulation ), as well as regional research ethical guidance, including the Economic and Social Research Council (ESRC) Framework, and more locally, the University of Nottingham’s inter-faculty research ethics committees.
For third sector organisations, the ethical rules are a bit more ambiguous, with some guidance available online, but no formal way of ensuring that research output is driven towards influencing policy. Collaboration is key in this circumstance; the Nottingham Community and Voluntary Service (NCVS) in which Improving Lives is based, has previously published a report showing a contribution of £227m of the voluntary and community sector to Nottingham’s economy, as well as the equivalence of £14m in wages through non-paid volunteers working the equivalent of 649 full-time jobs.
For small charities like Improving Lives, there is constant need and expectation to justify their purpose, and research is one way to do it; cut-backs in funding have been exponential over the past decade (more than £3.8bn) and it doesn’t look like things are going to improve any time soon. This current structure in research capability, however, puts third sector organisations at a disadvantage, and serves to keep academic research in the ivory tower. In our current age of tackling social and income inequality, shouldn’t academia be more concerned with engaging with the not-for-profit services (particularly those that offer support to people with mental health difficulties ) in order to investigate their challenges, successes and their overall effectiveness? It is undoubtedly the third sector that holds much expertise and insight that is capable of shaping the way in which services are delivered in the community to improve lives.
What clients have said:
“They offered to escort me to appointments. They took me to my PIP court hearing. I don’t think I would have gone without her”
“I was able to speak to my worker about some personal issues. I had no one to discuss it with. I was able to get over that stage. He gave advice and encouragement and helped me to be open. I had no one else to speak to.”
“I was absolutely suicidal when I first came here.”
“If it wasn’t for something like this I don’t know what I would have done when my wife died. I would have turned to drink or drugs, I would have committed suicide.”
You can find the Improving Lives offices on the first floor of the Nottingham Community and Volunteer Service (NCVS) building, 7 Mansfield Road, Nottingham, NG1 3FB
Stephanie Sampson (@steph_samp) is an Associate Fellow of the Institute of Mental Health and PhD candidate (Mental Health and Wellbeing) in the School of Law (firstname.lastname@example.org)
Kate E. Pickett, Richard G. Wilkinson (2010) Inequality: an under-acknowledged source of mental illness and distress, The British Journal of Psychiatry, 197 (6) 426-428; DOI: 10.1192/bjp.bp.109.072066