Changing Minds is a therapeutic intervention that involves social learning and building leadership skills of long term mental health service users in order to challenge the status quo about mental ill health. People undertake a nine-month part time training course (consisting of 14-19 sessions) that equips them with the skills to co-design and co-deliver training from their own mental health perspective and to be paid for this.
All participants had been secondary mental health patients on the ward or been in contact with secondary mental health services at some point.
Aims and objectives
In 2004, the South London and Maudsley NHS Foundation Trust made the radical proposal to design with other partner organisations a training as co-trainers course titled 'Changing Minds'. Changing Minds aims to develop and equip participants with experience of long term mental health distress, to design and co-deliver mental health awareness training courses to challenge stigma and discrimination within staff groups and their local communities.
The long-term aim was to set up a training social enterprise that would be service user led and independent of SLaM. Five courses ran internally from 2004 - 2006.
This best practice was then taken and shared across London with subsequent programmes from 2008 to 2010 being delivered across 16 London boroughs as part of a Big Lottery funded project - Well London.
The Changing Minds vision was to develop a 'pool' of trainers who would deliver training using their direct mental ill-health experience to inform and enrich the experience of (in the first instance) the staff participants, resulting in delivery of better care. The emphasis was on the 'pool' of trainers being trainers who happened to have a mental health diagnosis-not 'mental health service users who are doing a bit of training' as had been the case with previous schemes. An experienced trainer who was a service user themselves would offer support, mentoring and development as and when needed. The pool would deliver different types of mental health awareness training according to their own particular preference and expertise for example substance abuse; self-harm; wellbeing; coping with bipolar disorders; caring for someone with mental ill health; supporting someone back to work. The pool of trainers were paid to deliver this training.
As they grew in confidence they would run and design their own courses as well as delivering their own Changing Minds courses to others to increase service user capacity. They could also join the social enterprise if they so wished or remain self employed.
Reasons for implementing your project
Many people who use secondary mental health services feel excluded from mainstream life due to the stigma and discrimination that surrounds mental ill-health. This has an impact on wellbeing, self-esteem, levels of confidence and also perceived ability to become involved in meaningful ways. Work and employment opportunities can also be affected due to contact with the services. Research has shown that equitable social face-to-face contact (Thornicroft, 2006) is one of the best ways of challenging stigma and discrimination about mental ill-health.
Training requires a level of expertise that develops many transferable work skills. It is an excellent way for people with mental ill-health to become involved in shaping the services they receive and to be role models for others experiencing distress. Having awareness raised by people with direct experience of stigma and discrimination has a powerful impact within services and the community in general. It can support a possible route back into having a valued social role in community life, employment or even a new identity: from a recipient of services to a provider. It could therefore improve recovery/clinical outcomes. It is also an excellent opportunity for people to use their expert mental health experience in a positive way.
In reality, persuading mental health and primary care trusts to recognise this as a possible route to involving people effectively was very challenging. This was due to the limited ways in which staff's own internalised stigma about people's capability was expressed and how user involvement is viewed in organisations such as these. The initiative was trying to move people from being tokenistically involved which was the norm, to real leadership roles.
How did you implement the project
The Trust was able to fund a post to design the course, but unable to provide a supported budget to deliver the course in practice. The additional funding necessary came from one of the partners who originally designed the course - Lewisham Social Care and Health. Subsequent funding for 2005-2010 was obtained from a range of organisations including JobCentre Plus, Croydon Enterprise and a Big Lottery funded project called Well London. The principal challenge was working with five funders who had different expectations and requirements.
This challenge was overcome by understanding what each funders particular agenda was and working in partnership with them to achieve their objectives as well as never losing sight of our own. It was also important to clarify at the outset what we could be flexible on and what we couldn't e.g. organisations had to deliver the training by employing people with lived experience but they didn't necessarily need to have lived experience themselves, though it would be helpful.
Monitoring of wellbeing was built into the entire course so that participants' experience of the programme could be evaluated throughout and support and guidance offered where necessary. Measurements were gathered using the Mental Wellbeing Impact Assessment (MWIA) tool. MWIAs were conducted with participants from all the courses from 2004 to 2010. Results from five of the nine courses show a high degree of consistency between participants across all courses on the determinants of mental wellbeing that Changing Minds had the greatest impact on.
-having a valued role-through going into voluntary work, paid employment and training delivery.
-development of supportive social networks.
Of the 63 graduates (from the nine courses), we were able to obtain data from 39 of them. According to the data, 23 (59%) graduates were involved in delivering training at the 12-month follow-ups for each of the years. Thirty-eight (60%) graduates have been delivering, are currently delivering or are actively planning to deliver mental health awareness training through commissioned organisations and 25 (39%) of the graduates have been involved in delivering mental health awareness training within SLaM. Twenty-four (38%) graduates have either gone back into full or part-time work (including the delivery of the training) and 10 (43%) have gone onto further education opportunities.
The course has now been replicated across 20 boroughs of London. The course has been shown to have a Social Return on Investment of £8.78 for every £1 spent. Therefore as an education and training resource it has excellent commissioning possibilities as well as building the capacity for service users who have been inpatients to support their own recovery.
Key learning points
Who is service user involvement really for? The government says that it is for patients to feel more empowered and be able to say more clearly what they want from the services they receive. From experience we found that funding a post in isolation will lead to further frustrations, for the staff who are delivering the service and particularly for the service users in receipt of the service. The additional funding necessary came from a range of organisations. Working with five funders who had different expectations and requirements was a challenge.
Persuading mental health and primary care trusts to recognise training as a possible route to involving people effectively was very challenging. This was due to the limited ways in which user involvement is viewed in mental health and primary care trusts. It is very important in a programme of this type that there is senior level buy in. Being able to pilot something which has been evidenced with clear achieved outcomes helps when looking for funding and challenging internalised stigma. Having a clear infrastructure involving support and development for participants which can be implemented upon finishing is helpful.
When commissioning, we learnt that recruiting an organisation that has similar underlying values regarding recovery is crucial to the potential success of this work. Energy can then be used to support service users to believe in this for themselves. Make sure an organisation has an ethos of paying people, and not just working with them as volunteers.
In our experience organisations who were successful in delivering this work were ones who a) already designed and delivered training courses and/or b) who worked with disadvantaged groups to empower them. It would be recommended that this would be the ideal combination for optimum results.