Authors: Dr Paul Willis (Head of the Centre for Research in Health and Social Care, School for Policy Studies, University of Bristol), Dr Christine Dobbs and Dr Elizabeth Evans (Centre for Innovative Ageing, Swansea University).
Recently The Sunday Times broke news that the UK Government would scrap proposals for legal reform to allow trans citizens to self-identify their gender. A consultation on proposed changes to the Gender Recognition Act 2004 in England and Wales (first proposed in 2016) included whether individuals should be given the right to self-define their gender rather than having to prove this through the current medicalised measures embedded in the 2004 Act. A response from the UK Government to the consultation is yet to be released publicly, although the story in The Sunday Times suggests a step away from this proposed action.
Importance of inclusive and gender-affirming environments
Running alongside this proposed U-turn in policy direction have been intensely debated concerns about the ‘threat’ that trans people, namely trans women, represent to single sex spaces for women. This is not the first time that trans individuals have been misrepresented in media press as a threat to the rights of others. Within the title and text of the article published in The Sunday Times the increased recognition and rights for one group (trans citizens) is presented as oppositional to the rights of others (in this case women seeking safe spaces in women-only facilities).
It’s as though we can’t talk about the extension of rights for one group without compromising important safeguards for another. It also secludes the material reality that some trans individuals will require access to safe women-only spaces and services when experiencing abusive relationships. The two groups are not mutually exclusive.
This comes at a time when trans citizens in the UK more than ever need safe, supportive and gender-affirming services. Findings from a recent national survey of 100,000+ LGBT citizens highlight socio-economic disparities between cisgender (individuals whose gender matches the sex assigned to them at birth) and trans respondents. For example, trans respondents were more likely to have left education after secondary school and to earn less, and were less likely to have had a paid job in the 12 months prior to the survey.
The findings bring acute attention to the safety concerns of trans citizens: over two thirds of trans respondents stated they avoided being open about their gender out of concern for negative responses from others. They reported higher rates of verbal, physical and sexual harassment and violence than cisgender respondents. In parallel, hate crimes perpetrated against trans citizens increased by 32% in England and Wales between 2016-17 and 2017-18. This represents crimes that are reported to the police so is likely to be an underestimate.
Trans ageing and care in later life
Trans individuals in mid to later life will be no strangers to debates about the extension or erosion of equal rights and recognition for trans citizens in the UK. They have lived through multiple decades of change to equality and human rights law and social and healthcare policy and provision. Older trans adults are frequently invisible in public discussions about legal and social reform and healthcare provision for trans citizens, with much greater attention being given to the needs and interests of children and adolescents. Receiving good, inclusive healthcare will become more of a priority for many trans adults having to manage multiple health conditions in later life or to those providing care to significant others experiencing health-related changes.
Our recently published paper brings attention to the ageing-related concerns and expectations of trans and gender non-confirming individuals in mid to later life. We report key findings from a research study into the health and social care needs of older trans people in Wales, UK. The study culminated in the creation of practice guidance for healthcare professionals and social workers and the production of four short digital stories. These stories capture the ageing experiences of trans individuals living in Wales and were produced by trans filmmakers Fox and Owl from MyGenderation.
In our new article we highlight the key turning points trans individuals experience in mid to later life that trigger decision-making about seeking to transition socially and medically. A central theme is the notion of ‘trans time’ and the ways in which trans individuals experience the passage of time as non-linear. For some individuals later life has been experienced as a new life-chapter and return to young adulthood, partly stemming from gaining access to gender-affirming and supportive healthcare services.
For others later life was overshadowed by a sense of running out of time as they experienced frequent delays and hurdles in seeking to transition through medical means. This was often a result of systemic problems with the provision of gender-affirmative healthcare services by public bodies in England and Wales. We are happy to report that since we completed the study a new Welsh Gender Service for adults has been launched by NHS Wales. We hope this leads to a much-improved service for Welsh residents. However, there is still much more to be done.
Being able to change gender legally without having to rely on medical diagnosis and treatment would make older age a much more positive experience for many trans individuals seeking to transition in later life. Less time and energy would be spent on having to navigate through a complicated healthcare system; this is particularly important for older individuals who have ongoing concerns about their health and wellbeing and want to experience older age as a new lease of life and receive full recognition for who they are. Older age is too often understood through a biomedical lens of physical and mental decline and impairment – the biomedical lens of old age can eclipse recognition of older people’s social identities, life-experiences and life-history. Untangling medical intervention from gender transitioning and legal recognition would be a step closer to a more positive ageing experience for many trans individuals. Finally, not all people taking part in our study sought to transition through medical means, further highlighting the importance of separating legal recognition from medical requirements.
Self-identification, dignity and maintaining autonomy are important dimensions to positive ageing for older adults; the proposed law reforms would help extend this for older trans individuals.
The paper is available to read online as open access: Willis, P., Raithby, M., Dobbs, C., Evans, E., & Bishop, J. (2020). ‘I’m going to live my life for me’: Trans ageing, care, and older trans and gender non-conforming adults’ expectations of and concerns for later life. Ageing and Society, 1-22. DOI: https://doi.org/10.1017/S0144686X20000604
Visit the Trans Ageing & Care website to view the digital stories and other resources. The study was funded by the Dunhill Medical Trust, 2016-2019 (Grant no. R416/ 0515). A summary of the study can be read here.
In the current climate of self-isolation, keeping social and staying in touch with others is vital to our health and wellbeing. This is even more important in later life when people’s social networks may start to shrink in size.
Older adults can experience feelings of loneliness due to the loss of intimate connections, such as the death of a spouse or relationship separation, and the transitions associated with later life, such as retirement, the onset of chronic illness, or changes in living environments. We also know that social isolation (being separated from the company of and contact with others who are important to us) over a protracted period of time can trigger feelings of loneliness and have an adverse impact on older adults’ emotional and mental wellbeing.
The current government policy response requiring older housing residents aged 70+ to self-isolate during the COVID-19 pandemic can potentially exacerbate feelings of loneliness. Below are some key messages for those providing support to older residents in housing with care schemes . These messages have been distilled from research projects led at the University of Bristol over the last four years on extra-care housing, loneliness in later life, and social inclusion in housing schemes for older adults.
1) Supporting residents to maintain daily contact with significant others, such as through telephone calls or online messaging, is essential. Many older residents in housing schemes will live alone in their homes. While living alone does not mean every resident will experience loneliness, residents may be missing regular face-to-face contact with family (e.g. adult children and grandchildren) and good friends within the same scheme and the wider community.
Housing staff need a good understanding of each resident’s social networks – who is important to them and who do they call on for practical and emotional support when needed. For example, we know from previous research that older LGBT+ people may regard friends as close family members and hold close friends in equal esteem as biological kin. Supporting residents to maintain the connections that matter to them is really important during this time of self-isolation.
2) We know that some older adults may equate loneliness with thoughts of being socially discarded, not having a purpose, and being no longer valued by others. Now more than ever, residents may value having a clear role they can play to contribute to the lives of others and the scheme where they live. While volunteering outside the scheme is not a viable option, residents could be supported to help other residents, such as keeping in daily telephone contact with those who lack social contact or experience illness or poor health. Other ways of contributing could be through gardening or maintenance activities around the scheme where tasks can be completed solo.
3) While some older residents may already use social media on a regular basis and be confident to extend their use into new media such as community-based WhatsApp or Facebook groups, we should remember that many will have no access to the internet and as a result may become more isolated over the coming weeks and months. For example, preliminary findings from our DICE project suggest that around a third of housing with care residents never use the internet, in contrast to over half using the internet at least once a week.
Our recent research into older men’s experiences of loneliness with Age UK highlighted how much older men who were single or living alone valued social connections with other people through groups, whether that be through clubs, societies, sports groups, or learning with others. While some men were online, it was routine, face-to-face contact outside of the home that was valued and helped keep loneliness at bay. Where feasible within public health guidelines, staff may explore ways in which residents within schemes can meet together each day for a short period of time while maintaining social distancing, for example in open courtyard spaces or gardens.
4) Our previous work with older people living in housing with care settings illustrates how the impact of austerity had already exacerbated older people’s experiences of isolation and loneliness because of a lack of public funding to support social engagement. For these older people, calls to self-isolate may reinforce their sense of isolation and marginalisation from wider society; regular resident contact with housing and care staff is critical more than ever.
In addition, as a result of the new Coronavirus Bill 2020, many local authority obligations bestowed under the Care Act 2014 (for example, in relation to assessing an individual’s needs, determining an individual’s eligibility for services, and care planning duties) have been suspended. As a result, care and support staff will need to be attentive to the additional care and wellbeing needs that residents may have, and housing with care providers may have to provide additional care and support to those older people in need without local authority involvement.
Concluding messages: Other groups have recently commented on the many problems of adopting blanket policy approaches based on chronological age (e.g. see the British Society of Gerontology’s recent statement). We echo these concerns about the ageist assumptions within this policy approach, while recognising that the mortality risk from COVID-19 is associated with age. More than ever, older adults need support to keep in regular social contact with others. If that must be in their homes, they will need assistance to access online technology to facilitate this, and it should not be assumed that digital resources and broadband access are automatically available to them. At the same time, maintaining face-to-face contact, at the recommended physical distance, is equally important and should not be underestimated or forgotten.
 By ‘housing with care’ we mean housing schemes that support older adults with independent living while providing care and support if needed, for example extra-care housing, sheltered housing and supported living schemes.
About the authors:
Paul Willis and Ailsa Cameron are Senior Lecturers at the University of Bristol and Senior Research Fellows of the NIHR School for Social Care, England. Brian Beach is a Senior Research Fellow at the International Longevity Centre UK. For more information contact: firstname.lastname@example.org
The Provision of Social Care in Extra Care Housing, 2015-17, University of Bristol, funded by NIHR School for Social Care Research. More information: https://www.housinglin.org.uk/_assets/Resources/Housing/OtherOrganisation/ECHO-summary.pdf
Older Men at the Margins: Addressing older men’s experiences of loneliness and social isolation in later life, 2016-2019, University of Bristol with Age UK, funded by NIHR School for Social Care Research. More information: https://www.ageuk.org.uk/our-impact/policy-research/older-men-at-the-margins-how-men-combat-loneliness-in-later-life/
Promoting social inclusion in housing with care and support for older people in England and Wales (the DICE study), 2019-2021, University of Bristol with ILC-UK and Housing LIN, funded by the Economic and Social Research Council. More information: https://www.bristol.ac.uk/sps/research/projects/promoting-social-inclusion-in-housing-schemes/
Isolation: The emerging crisis for older men. A report published by the International Longevity Centre UK in 2014. https://ilcuk.org.uk/isolation-the-emerging-crisis-for-older-men/
Dr Ailsa Cameron, Senior Lecturer in the Centre for Research in Health and Social Care and a Fellow of the NIHR School for Social Care Research, discusses findings from a recent project looking at how we can best support volunteers in social care settings.
Encouraging people to volunteer in social care for older people has been a key part of practice in the sector for many years, but in recent times the significance of volunteering has grown, particularly in light of the funding cuts faced by the sector.
We know volunteers can do a huge amount to enhance the care and support that older people receive. They can bring a new energy to settings and give older people an opportunity to develop meaningful relationships with people other than paid care workers. Volunteers can also do a lot to reduce the loneliness and isolation that many older people experience.
There are also benefits for those who volunteer in social care themselves – opportunities to develop new skills, gain experience of different work contexts and enhance their own wellbeing, or just an opportunity to give something back.
During our research on Exploring the Role of Volunteers in Social Care Settings (ERVIC), we heard about many settings where volunteers were making an important contribution to older people’s care and support. We learnt about volunteer-run exercise programmes and befriending services in residential care, organising and running lunch clubs, and volunteers giving extra support at day centres and visiting people recently discharged from hospital.
However, reliance on volunteers to deliver care and support for older people brings new challenges to the sector. Volunteers are not a ‘free service’ – to be effective, they need training as well as ongoing support. This is particularly important given the vulnerability of many older people who receive social care services. Volunteers have much to offer, but they also need to be clear of the boundaries and limits of their role, and they need to know what to do if they have concerns about an older person.
Several of the settings we visited told us they were struggling to recruit and retain volunteers. Changes to retirement law, as well as growing numbers of older people looking after grandchildren or caring for their partners or friends, means that fewer people have the time or flexibility needed to volunteer. On top of that, delays in DBS processes and burdensome training programmes were thought by volunteer coordinators and managers to put some people off of volunteering in the sector.
On Thursday 21 March 2019, in partnership with Voscur, we will host a workshop at the Southville Centre to present our findings from the ERVIC project and exchange ideas about the challenges and opportunities associated with working with volunteers in social care settings for older people.
This event is aimed at volunteer coordinators, commissioners of adult social care and providers and managers of social care organisations and will involve a Voscur-led workshop called Measuring the Value of Volunteering, plus discussions about how volunteers are contributing to social care, the challenges of involving volunteers and how best to work with volunteers.
If you’re connected to social care, volunteering or services for older people, or you’re just curious and would like to find out more, we hope to see you at the Southville Centre next month. Book your place for the workshop.
Watching the early February snow fall outside my office window is a beautiful sight but it can also be a stark reminder that snowfall in the UK means many things to different people – for some a frustrating barrier to their daily routine or journey, for others a (hopefully) opportune moment to enjoy time off from work or school. For some people who struggle with feelings of loneliness day-to-day and experience social isolation daily, adverse weather conditions in winter can be another reminder of their solitude and disconnection from others and present a further obstacle to leaving the home, both mentally and physically.
Loneliness is a natural and widely experienced emotional response to our desire for increased social contact with others and it’s something we all experience across our lifetime. Feeling lonely is an important social cue that tells us we need to reach out and connect with friends, family members or other people in our neighbourhood or local community. In a lot of cases these feelings are temporary and serve a short-term purpose in getting us socially mobilised. For some people however, loneliness can become an ongoing and persistent ache for other people’s company that is not easily alleviated. It is increasingly defined as a social problem requiring a healthcare and social policy response and, in the UK, this has recently accumulated in the appointment of a Minister for Loneliness and the release of a cross-departmental strategy on tackling loneliness by the UK Government.
Winter is often associated as a difficult time for people living with long-term loneliness and experiencing social isolation, with shorter days and longer nights and adverse weather conditions that undermine attempts to meet and connect with other individuals in person. National campaigning organisation Age UK runs an annual campaign, ‘No one should have no one’, to bring attention to seasons such as a winter and festivities like Christmas as particularly difficult times for older adults who may be socially isolated. Age UK estimates that currently around 1.4 million older people (50+) living in England are ‘often lonely’. We know that a greater percentage of older women report loneliness in comparison to older men in the UK but that men can also struggle with discussing and disclosing emotionally sensitive topics such as loneliness.
As part of a two-year research study on older men, social isolation and loneliness, we’ve been speaking to 111 men from different social groups and circumstances about the ways in which they experience loneliness and how they alleviate these feelings and keep it at bay. We’ve interviewed men (65-95 years) about their experiences from five different groups: older men who are single or living alone in rural and urban areas; older gay men who are single or living alone; older men with hearing loss; and, older men who are carers for significant others (such as family members, partners). The project is funded by the NIHR School for Social Care Research to April 2019 and in collaboration with Age UK.
Across our interviews with different groups of older men, a common thread has been the challenges of combating loneliness during colder months, and winter and night times as being tough times to manage, particularly when on one’s own. The older men in our study talked of ‘winter blues’ that can make them feel particularly isolated and how with the dark nights and winter illnesses they can have trouble socialising and engaging in activities. Over half the men we interviewed lived alone which also complicated efforts to connect with others daily.
I suppose it’s the what, regrettably, is the long nights. We change the clock, the night comes in that much quicker, and daylight hours are shorter.
It gives the general feeling of claustrophobia, then. [M83, 75, single/ living alone]
Sitting here, probably not feeling very well, which is when it hits, in the depths of the winter, when it’s dark. I’m doddering on my legs, and I have to be careful not to go out when it’s icy these days, because you don’t want to fall over and break your hip. That can be very serious. [M7, 72, single, gay]
For men who are caring for significant others such as partners or adult children, night times were difficult not because of the season but more as the first moment of the day they were alone and not in the company of the person they were routinely caring for. This could be experienced as a moment of necessary solitude but also a reminder of their isolation from others within the caring relationship.
Despite experiencing periods of loneliness, this does not mean these men were socially isolated from others. This is where it is important to recognise the difference between loneliness and social isolation. Most men we spoke to had regular contact with friends and family members in their social networks and all were connected to and participated in groups in their local community. Many men told us about how they valued contributing to and being actively involved in running groups and the importance of having a role and purpose which made them feel valued and regarded by others. With Age UK, we are currently in the process of developing good practice guidance for service providers on what men value about groups and some of the considerations that need to be given to running groups.
Tackling loneliness at any time of the year is the focus of many voluntary and third sector organisations. Bristol Ageing Better is one locally-based programme that is commissioning groups and interventions aimed to reducing loneliness and isolation for older people. The UK Men’s Shed Association is another initiative targeting the interests and needs of older men, with Sheds running across the UK. While the UK Government’s Strategy on Loneliness is a welcome policy response on this important issue, there remains further scope for tackling the wider, more complicated problem of social disconnection and the social distances older people, amongst other groups, experience between themselves and the wider communities in which they live.
Further information: Findings from the study, along with the practice guidance, will be launched on Monday 29th April 2019 at Age UK, Tavis House, London WC1H 9NA. To find out more about the launch event please contact email@example.com
Funding disclaimer: ‘This blog summarises independent research funded by the National Institute for Health Research School for Social Care Research. The views expressed in this blog are those of the author(s) and not necessarily those of the NIHR SSCR, the National Institute for Health Research or the Department of Health and Social Care.’
When times get tough, disabled people always seem to go to the bottom of the pile. It’s as if the problem of ‘disability’ is always one step too far, or something which cannot be contemplated until everything else is sorted out. For instance, the debates about BREXIT have centred on trade agreements and free movement of citizens. How often do we talk about the rights of disabled people, and how they may be protected under existing EU legislation?
The UK itself has laws to protect disabled people’s rights, with the 2010 Equality Act. But constant vigilance is needed to remind public services that they have a duty to provide reasonable adjustments for disabled people. UK financial cuts are impacting most heavily on disabled people, and a recent report by the charity SCOPE highlights that, on average, for every £100 earned by a disabled person, only £67 is left after disability-related costs.
Disabled people certainly incur additional costs by virtue of their additional needs, but is disability too much of a ‘cost’ for society? We would argue that the reverse is true: economic, political or social crises create moments when disabled people must be at the forefront. This is what we have been documenting in our project ‘Getting Things Changed’ (Tackling Disabling Practices: Co-production and Change).
Disabled people have always faced problems which are created because society is structured without disability in mind. For instance, the rail transport system assumes that all passengers can step over a gap between a train and the platform, that they can walk to their seat, and indeed that sitting in a ‘standardised’ seat is an option. At a more subtle level, we have also found countless practices in our study which exclude or marginalise disabled people. The way things routinely get done in everyday life can be problematic, and that can include the material infrastructure of a building as well as the ways in which people interact. For instance, people with dementia might rely on familiar, clear signage to find their way in and out of a building, or the facilities in it, but they also need people who will give them time to communicate, or understand how to wait for a response in a respectful way. In parts of our project, we are looking at the barriers disabled patients face in English hospitals. With regular news items about the crisis in the hospital system, we know that change must happen.
We argue that this is the time to include disabled people, not just as recipients of care, but as change makers. Our project is co-produced with Disability Rights UK and with other groups of disabled people who are actively involved in the research. Given that disability is part of humanity, we should all be working WITH people with disabilities, to create a more just society where all are included.
Understanding a disabling society
So how can we start to understand why things get stuck? Since the 1980s and the introduction of the social model of disability, Disability Studies theory has focused considerable attention on the dichotomy between the social and medical model of disability. There have been continual debates since that time, with UK theorists arguing since the 1980s for a new understanding of disability and impairment. Oliver (2013) sums up neatly what the real issues are now:
“While all this chatter did not matter too much when the economy was booming, now it no longer booms it is proving disastrous for many disabled people whose benefits and services are being severely cut back or removed altogether”
Have disabled people’s lives become more restricted since the 1980s, or have the concerns of disabled people themselves been overtaken by theoretical debate? And how can we as activists and academics change that tide? In our recent article from ‘Getting Things Changed’ we argue that we need as a society to go further than debates about ‘what is disability’. The social model directed our attention towards the external barriers facing disabled people, and now we need to find better ways of analysing and understanding those barriers. Many people use the word ‘culture’ here, to bemoan the difficulties caused by unhelpful attitudes and approaches which can be evident in congregate services such as care homes or hospital. In our study, we have turned towards the ideas of social practice theorists such as Elizabeth Shove, which have helped us to understand how things get done, how practices get shaped – and therefore how we can get a handle on change.
An example from our wide-ranging project comes from the insights of people with dementia. Since 2009, we have had an English Government policy called ‘Living Well with Dementia’ . What matters for people with dementia is the quality of life they are leading right now, and our work with the ‘Forget-me-Not’ group from Swindon has helped us to unpick what this might mean.
Here are some words from the researchers with dementia from the Forget-me-Not group:
“Everyone will tell you the same thing. You’re diagnosed, and then it’s ‘You’ve got dementia. Go home and we’ll see you next month’. What we need is for someone, like a counsellor or someone else with dementia, to tell us at that point ‘Life isn’t over’. You can go on for ten or fifteen years. And you’re not told, you’re just left. And I thought, tomorrow my day had come. The fear and the anxiety sets in, and then the depression sets in, doesn’t it? I think when you’re diagnosed, you should be given a book. And on the front of the book, in big letters, it should say: ‘Don’t panic’.”
In terms of social practice theory, these are people who do not want to be seen through a medical lens as individual tragedies, but are turning around the whole meaning of dementia into something where they are in control, can support each other and where they have a voice. However, social practice theory also reminds us about the importance of material resources. For instance, in order to meet each other and to have a collective sense of peer support, people need to have spaces which are not institutionalised, which they feel they can ‘own’. All too often, we have seen very well-intentioned group activities taking place in old, large halls, or where people are routinely sitting in configurations which make communication difficult. But we have also seen the Forget-me-Not group, in an ordinary, homely environment, where staff members interact on a basis of equality with the members who have dementia.
This is just one of many examples where we are finding that people CAN do things differently, and where the ‘culture’ can change towards inclusion and empowerment. We hope our research will provide the impetus to take some of this further.
Change will never be completed – but we will be presenting the latest research from our project and discussing some of these ideas at our launch event on 25 May. Book your place now to find out more about the many strands of the project how we can all be change-makers.
This post was written by Prof Val Williams with assistance from Prof Pauline Heslop, Beth Tarleton, Wendy Merchant, Bernd Sass and Joe Webb at the Norah Fry Centre for Centre for Disability Studies.