Increasing the Voice, Visibility and Influence of Asian older people with mental health problems Sharing the learning and key messages from a Development Programme with and for Asian older people in Newham June 2014
Increasing the Voice, Visibility and Influence of Asian older people with mental health problems Sharing the learning and key messages from a Development Programme with and for Asian older people in Newham
1 Background and Introduction 1.1 In late 2012, the National Development Team for Inclusion (NDTi), Time to Change (TTC) and SubCo came together to explore ways in which Asian older people with lived experience of mental health problems could be supported to get involved with the TTC campaign to challenge mental health stigma and discrimination and in NDTi’s work on increasing awareness and understanding of mental health in later life, and supporting older people to become local ‘leaders for change’. At the same time, SubCo staff were increasingly coming across older people with mental health problems but did not have the capacity, or resources to focus on their specific needs and aspirations.
1.2 The purpose of this brief report is to describe the work that was undertaken to support a small group of older Asian people who are in contact with SubCo, to become local ‘leaders for change’. The report’s main purpose is to share the learning and key messages from a piece of development work which took place between April 2013 – March 2014, culminating in an event bringing together older people, including those who took part in the programme and local decision makers, to share and learn from older people’s experiences of living with mental health problems and of taking part in the programme. The report does not make any recommendations, and instead seeks to provide ideas to generate discussions locally about what works in engaging with older Asian people with lived experience and what needs to change to ensure that the common mental health problems experienced by all older people are understood and addressed at policy and practice levels, in the same way as dementia currently is. If we were to make any recommendations, it would be that local solutions are co-produced with Asian older people.
2 What we did and how we did it 2.1 Following discussions between the three partners, it was agreed that we would test out the Leadership Development programme designed by NDTi, as part of their Older Leaders for Change programme, with each partner taking on specific roles and responsibilities: SubCo staff took on the responsibility of ‘recruiting’ older people who matched the criteria set out in a role description and in supporting them to participate before, during and after the programme. Two members of SubCo staff were freed up from their normal service delivery roles to work with the NDTi Project Manager in delivering session and/or interpreting during the programme, in a community language spoken and understood by all participants. SubCo also provided the venue and made all the other arrangements including transport for people unable to get to the centre by any other means. NDTi had overall project management responsibility, including the design and delivery of the programme, project review and evaluation and liaising with TTC and others about useful culturally and linguistically appropriate materials. NDTi and TTC contributed financially towards staff time, refreshments, transport and the final event.
2.2 Prior to delivering the programme with and for older people, a workshop was held with the SubCo staff team to go through the aims and objectives of the programme, including developing their understanding about mental health; the conversations that take place about mental health in Asian communities based on what they hear and observe; what prevents older people from speaking about their own mental health and wellbeing – what helps and gets in the way of this happening and any culturally/linguistically appropriate resources that can help older people to think about their own experiences – here we were interested in finding films, poetry and video clips which help facilitate discussion. The workshop was very helpful in identifying some of the challenges and barriers to addressing mental health within Asian communities and in particular how they impact on older people’s confidence in speaking up and their capacity to lead and influence change, due to the stigma they experience. These discussions helped to shape the programme with older people.
2.3Following the workshop, staff directly involved with the programme, began to ‘recruit’ older people and to identify culturally/linguistically appropriate resources such as Bollywood films, poetry, music and videos which tackle mental health issues within Asian families and communities. After a period of intensive work, including 1:1 and group discussions with older people known to SubCo staff, eight older people all of whom have struggled, or are struggling with their mental health (three men and five women between the ages of 55 and 80) were supported to take.
2.4 The overall aim of the modular programme was to develop the confidence, skills and capacity of Asian people people to speak up about their mental health and wellbeing, resulting in increased voice, visibility and influence. Specific objectives included:
Developing greater awareness and insight into their own mental health and wellbeing;
Developing practical ideas about what they would like to change and how, including the provision of appropriate services and supports for Asian older people.
2.5 The programme started by exploring older people’s understanding about mental health, including the language that is used to describe it and the beliefs and attitudes towards mental (ill) health within Asian communities. We used video clips from ‘Subhe Umeed (Dawn of Hope)’ a resource produced by the Royal College of Psychiatrists, in Urdu, highlighting the impact of depression on people of all ages, as a way of getting people to start thinking about and sharing their own experiences. Subsequent modules focused on mental health in later life; sharing personal stories including what helps and what gets in the way of people living well and remaining connected to what is important to them; the key skills needed in influence change in one’s own life and more widely and identifying what needs to change and how. Other resources that we used during the programme included Five Ways to Well-being, a set of evidence based actions by the New Economics Foundation and resources from Time to Change, including tips on how to start a conversation about mental health. Each module was delivered over the course of a day, with regular breaks and a debrief after each session.
2.6 An event to celebrate what older people had achieved together and to share the learning and key messages was held in March 2014. Older people who took part spoke up about their experiences of living with mental health and of taking part in the programme, via video, to an audience of over 70 people, including older people, local community and voluntary organisations and statutory services.
3. Key message and learning from the overall programme 3.1Engaging with Asian older people with mental health problems takes time and requires a commitment to tackling the stigma and discrimination (based on age, race and mental health) which they can face when speaking up about their experiences and accessing services and supports that meet their needs and aspirations.
3.2Working with and through a community based organisation such as SubCo, that is known and trusted by local people, and has a track record of working with Asian older people is key to gaining older people’s trust and confidence.
3.3Equipping staff with the knowledge, tools and resources with which to support older people with mental health problems, including tackling the stigma and discrimination which exists, is as important as supporting older people in developing their confidence, skills and capacity with which to influence change in their lives and more widely.
“We’ve developed as a staff team - we now talk openly about mental health amongst ourselves and with older people”
3.4 Targeting and supporting people who have developed mental health problems in later life, as opposed to people who have grown older with mental health problems can be challenging, as they can be reluctant to speak up and seek help. However, it is possible, as has been demonstrated through this project, with some positive outcomes for the individuals involved.
“It’s good as I don’t feel like I’m alone….it [sharing] lightens the burden”
3.5 Having the time and a safe space where older people can come together with others with similar experiences, to share and learn from each other is critical. For most older people taking part, this was the first time they were able to share their experiences of living with mental health problems and what helps/hinders them in speaking up and seeking help. Feeling heard, supported and not being judged by their peers were key factors in enabling people to feel safe and to learn.
“We don’t have these discussions at the day centre”
3.6The power of peer support cannot be overestimated. We observed older people reaching out to others, to share personal and often painful experiences and provide empathy, from the outset.
“I feel great when I’m helping other people”
“I’ve learned how to support others with their struggles”
3.7 Older people with mental health problems want to contribute to their families and communities and remain connected to the things that are important to them, but often find themselves excluded and marginalised from the networks that can help them during difficult times.
3.8 The ease with which older people were able to discuss their physical health was in sharp contrast to the difficulties they experienced when talking about their mental health problems.
3.9Older people’s role as carers impacts on their ability to speak up and to seek help and support. Some participants felt that caring for others was positive as it helped to take the focus away from their own difficulties, whereas others thought it got in the way of them seeking help when they most needed it.
“I can’t focus on my depression - my son is disabled so I have to look after him”
“If I can’t cope, who’s going to care for my relative”
3.10Learning from experience. Older people have the necessary skills required to bring about change and gave many examples of how they have influenced outcomes for themselves and those around them. However, due to stigma and discrimination they have experienced, they have not been able to put their skills and experience to good use.
3.11 Asian older people are not used to participating in programmes of this nature which seek to build their confidence and capacity to influence change, and in working together with professionals, as equals in co-producing solutions - they are much more used to being at the receiving end of services.
4 What older people told us was important to them 4.1 Tackling the stigma and discrimination that exists in all communities, especially within families and wider networks, including those that are faith based, is an urgent priority for older people.
“In our community, it’s a case of don’t share your sorrows”
4.2More opportunities to share with and learn from others with similar experiences, resulting in increased confidence and learning what works and what gets in the way when trying to bring about change.
“Connecting can be hard but it really helps”
4.3Culturally and linguistically appropriateservices and supports, including a range of talking therapies so that older people do not have to rely solely on their GP’s who do not always have the time, or understanding about mental health problems in later life.
“GPs focus on medication, nothing else”
“GPs don’t have time”
4.4Mental health friendly communities, which are welcoming and inclusive, where Asian older people have a positive role to play and where they can both, contribute to and receive from.
5. Next Steps 5.1 SubCo to share the findings and lessons contained in this report with older people who took part and more widely amongst its membership, to continue to raise the profile of mental health in later life and to build on some of the ideas and solutions that older people have identified through this work.
5.2 SubCo will share the findings and lessons arising from this work, with local groups, organisations and agencies, including the third sector, CCG and local authority.
5.3 SubCo to develop ideas and identify funding for work tackling stigma amongst families and faith communities – this should be co-produced with older people with lived experience.
5.4 SubCo will seek to ensure that the extension of the Newham Community Prescription programme set up by the CCG, with a focus on long-term conditions, includes the common mental health problems experienced by Asian older people.