Original scientific article Received 7 December 2021, accepted 7 February 2022 doi: 10.51741/sd.2022.61.1.41-59 Trish Hafford-Letchfield, Sue Westwood, Michael Toze Navigating LGBT+ ageing inequalities during challenging times A case study of UK LGBT+ community organisations The COVID-19 pandemic has had a significant impact on older people's lives on a global scale but for some marginalised communities have seen a marked exacerbation of health and other inequalities. Research has highlighted the impact of the pandemic on lesbian, gay, bisexual and trans (LGBT+) people's lives, but less has been documented about the experiences of LGBT+ older communities and how their specific needs have been mediated. Community-based advocacy organisations are central to promoting LGBT+ human rights in the UK through its social movements, and this paper explores their role and significance during a distinct period of the UK mandatory isolation. Drawing on a case study approach based on qualitative interviews with six key LGBT+ community organisations in the UK, we captured their insights into how they navigated support for older people when faced with limited resources and the challenges posed by mandatory physical and social distancing. We position these events in current discourse about structural and health inequalities for LGBT+ ageing in the UK. Key words: advocacy, COVID-19, mandatory isolation, human rights. Trish Hafford-Letchfield, PhD, is a professor of Social Work at School of Social Work and Social Policy, University of Strathclyde, United Kingdom. Contact: trish.hafford-letchfield@strath.ac.uk Sue Westwood, PhD, is a senior lecturer at York Law School, University of York, United Kingdom. Contact: sue.westwood@york.ac.uk Michael Toze, PhD, is a senior lecturer at Lincoln Medical School, University of Lincoln, United Kingdom. Contact: m.toze@lincoln.ac.uk Ravnanje z neenakostmi v starosti LGBT+ oseb v času družbenih izzivov -Študija primera britanskih LGBT+ skupnostnih organizacij Pandemija covida-19 je imela velik vplivna življenje starih ljudi po vsem svetu, a nekatere marginalizirane skupnosti so povečanje zdravstvenih in drugih neenakosti občutile še posebej močno. Raziskave so podrobneje pojasnile vpliv pandemije na življenje lezbijk, gejev, biseksualnih in trans oseb (LGBT+), manj pa je dokumentiranega o izkušnjah starejših oseb v LGBT+ skupnostih in zadovoljevanju njihovih potreb. V Združenem kraljestvu so skupnostne zagovorniške organizacije s pomočjo družbenih gibanj ključne pri promociji človekovih pravic LGBT+ oseb. Članek obravnava njihovo vlogo in pomen v konkretnem obdobju obvezne izolacije v Združenem kraljestvu. Na podlagi kvalitativnih intervjujev s šestimi ključnimi britanskimi LGBT+ skupnostnimi organizacijami so prikazana njihova spoznanja o tem, kako so lahko zagotavljali podporo starim ljudem v izrednih okoliščinah omejenih finančnih virov ter obvezne telesne in socialne razdalje. Ti dogodki so umeščeni v aktualni diskurz o neenakostih starih LGBT+ oseb v Združenem kraljestvu. Ključne besede: zagovorništvo, covid-19, obvezna izolacija, človekove pravice. Dr. Trish Hafford-Letchfield je profesorica socialnega dela na Šoli za socialno delo in socialno politiko na Univerzi v Strathclydu v Združenem kraljestvu. Kontakt: trish.hafford-letchfield@strath.ac.uk Dr. Sue Westwood je višja predavateljica na Pravni šoli v Yorku na Univerzi v Yorku v Združenem kraljestvu. Kontakt: sue.westwood@york.ac.uk Dr. Michael Toze je višji predavatelj na Medicinski šoli v Lincolnu na Univerzi v Lincolnu v Združenem kraljestvu. Kontakt: m.toze@lincoln.ac.uk This process of less formal 'transcription' focused on interpretation and I generation of meanings from the data. Having an original recording of the J conversation allowed each researcher to recreate the nuances of the conver- | sation, such as voice, tone, and phrasing, to assist in any complex analysis. J Having access to the original recordings provided the authors with examples j from participants to illustrate the written account of findings (Fasick, 2001) | and to confirm common ideas instead of using verbatim transcripts (Seale and Silverman, 1997). Findings We discuss three themes discussed here, from the narratives of the LGBT+ organisational informants and partly driven by the discussion topics. Table 2 shows the overall description of themes and their subthemes. Table 2: Description of themes from organisational informants. Theme Broad description Sub-themes Going forward, going backwards - opportunities lost and gained There was a review and reflection on the opportunities lost and gained in the journey of the organisation during lockdown and how this both enabled them to go forwards as well as lose a lot of ground, or become thwarted in their primary mission. - Increased demand with decreased capacity - Unanticipated additional costs (technology) - Transferability of community engagement methods to virtual means - Loss of ground where significant influences had been working - Recovery costs post CO'VID - Wider engagement and recruitment of community members in different roles Crisis as a leveller in LGBT+ care and relationships In the process of adapting and adjusting to the new environment, the organisation observed a levelling of care relationships and activities in their community members during lockdown with increased efforts in some areas where support was needed. - Impact on community members making major care decisions - Active support from community members - Capitalising on existing networking - Provision of emotional connections - Capitalising on mutuality and reciprocity - Recognising own strengths for support of others Navigating transitions at different levels and the role of advocacy Organisation informants articulated their experiences and observations on their role as advocates for LGBT+ older people at different levels and how embedded they were or not in mainstream care and support. - Exposing of weaknesses/gaps in existing care infrastructure, framed within wider society ageism - Silences on impact for some ageing groups - Heightened concerns about future care - Role of LGBT+ community in providing essential support - Gaps in wider delivery framework - Cisnormative/heteronormative features of government response - Opportunities and losses in maintaining and innovating s Theme One: Going forward, going backwards - opportunities lost and gained !: The organisational informants provided mixed responses in their descriptions I of how their service had adapted to lockdown and the severe restrictions resulting from social distancing. Many commented on the frustrations of beginning g to make significant progress in some important areas, now thwarted, just as » they were coming to fruition. They described beginning to embed or develop ® better infrastructures to address LGBT+ ageing needs, again superseded by a deluge of heightened and intense demand for support. For example, one orga-! nisation was in the early stage of launching a new project looking at extra care £ housing tailored to LGBT+ needs and moving some provision to new premises. They had already been working remotely for several months. However, they ^ now felt that whilst this project was going ahead, there was little capacity in -s the sector for paying attention to new ways of working given their current return to crisis management. Other organisations incurred significant costs for protective personal equipment, licences and equipment to enable remote working and this had depleted any spare resources and capacity for innovation. In relation to those positive experiences of remote working, and identifying where it can work and how to provide virtual support more speedily, some remained cautious about whom exactly remote working was effective for, and whether anyone was being overlooked. There were many clear examples of challenges and frustrations in some areas of work, for example in supporting carers and people living with dementia who were not able to use technology and/or lacked the motivation to do so, including feeling overwhelmed by the rapid learning required. They noted that older LGBT+ people varied in their confidence and ability with technology and being familiar with the internet and smartphones with the proviso that it was wrong to rely on stereotypes, which assumed they were all the same in this regard. Some older people struggled more with remote communications, and, with lockdown, it was not possible to assist them in this area. Organisational informants expressed frustration on behalf of those people living in their own homes, who had made their own preferred informal care arrangements. Due to lockdown, some were having to substitute these with more formal care arrangement and were not able to have any choice regarding the carers supporting them. The mediation role of the LGBT+ organisation had been crucial here and fundamental to enabling pathways through care services. Reduced access to such mediation and advocacy sometimes manifested in individuals not wanting to call for help or go into hospital. This also resulted in some people taking greater risks in exposing themselves to COVID-19. Some of the benefits of lockdown for organisational informants, involved being able to recruit volunteers more easily, particularly volunteers who had been put off by travel or being visible when visiting community members but were happy to offer telephone or online support. There were other advantages to moving services to virtual delivery by being able to reach a wider membership, which also went beyond their geographical boundaries. This was beneficial for those who preferred to use the service more anonymously or try things out if they were experimenting with support. Some activities were not 49 transferrable to virtual delivery or there were restrictions on the size of the n J CD group or extent of contact, due to the administration burdens involved. They | had also been able to secure small pots of new funding from the Government j COVID fund to help bridge some of the gaps or work more closely with the B local authority Hubs. Another organisational informant said they felt very much consulted, included and valued by the local partnerships in their region, | which was validating and rewarding. n One organisational informant talked about an initiative that they had been | running for nearly five years that had successfully identified more than 300 people from diverse backgrounds who wanted to meet and connect with others. UU This was working very well with hosting events such as a regular group lunches g in the local region and the organisational informant described this initiative | as 'strengthening for the community'. The local authority who had been unsu- g ccessful in including older LGBT+ people in their mainstream services funded j this. The organisational informant noted however that in just in 3 months, there | had been significant loss to their community networking, planning and their contribution to training for local services. They now felt invisible, as services had lost touch with this information, which was not easy to replicate in phone calls or virtual conferencing. One of the planned projects had been training services in the importance of monitoring and evaluating sexual and gender diversity in local mainstream services. However, with COVID the impetus was lost to other priorities. Not having those systems in place had also led to lost opportunities for advocating and meeting needs that are more diverse during lockdown and was extremely exasperating and frustrating for the organisational informant involved. They further reiterated the irony where LGBT+ people were not being counted or represented in the public statistics in relation to the impact of COVID-19 on sexual and gender identities. This exposed the history of poor monitoring of LGBT+ organisations to date in the UK. Some organisational informants expressed wider anxieties that "equalities work in general and LGBT+ work in particular will get dropped down the agenda again". They referred to the notion of resilience - sometimes communicated as a sense that older LGBT+ people have lived through AIDS and discrimination and are therefore more resilient to hardship. Organisational informants were cautious about this, suggesting that present-day stressors could also trigger previous traumas, exacerbating poor mental health. Theme Two: Levelling of care relationships and support Organisational informants noted that in the early stage of the pandemic, people's focus was perhaps mainly on their own security and as a consequence it did not necessarily feel like the right time to be promoting community events. However, at the same time, there were many instances of LGBT+ individuals from different generations taking up a leadership role to support other older people. For one organisation, which was operating in a rural area, there were some difficulties faced in people getting practical support, such as getting food delivered. These gaps for some were bridged by active and proactive befriending by their peers. s There was an awareness of how people may feel more visible to neighbours, may become vulnerable to local harassment and may not want to contact neighbours J or families of kin. These had led to innovative initiatives between community s members such as initiating a letter-writing service and using skills to lead an g online photography course. f Organisational informants noticed differences between LGBT+ groups - ® for example, that lesbians seemed more likely to be in couples, gay men more ^ likely to be living alone. They gave examples of active outreach by some of those who were more secure in their environments, for example by supporting | their peers to attend a funeral. What came to the fore in this situation was the ^ nuances of how affected different members were within the LGBT+ community I and the recognition of any vulnerabilities by their peers. Lockdown exacer--g bated poorer mental health, poorer physical health and lower socioeconomic status for some. One organisation in a rural area realised that some of their connections with older LGBT+ people in the locality were 'tenuous' and were not sure how they have been impacted. Theme Three: Navigating transitions in different spaces and the significance of LGBT+ advocacy Interviewees consistently referred to weaknesses in the system that potentially affects LGBT+ ageing. One example was not knowing where LGBT+ older people were and their needs and circumstances. This reinforced silence in reporting on how the community was being affected and did not recognise their heightened concerns about future care. The events also served as yet a further reminder of concerns about how ready services are to engage with older LGBT+ people. Informants' discussions with service users involved conversations about their ongoing fears of having to become dependent on services, particularly long-term care provision, which may not be able to recognise or meet their needs. Organisational informants felt that COVID-19 had magnified this sense of vulnerability and fear of future loss of control. The organisational informants noted that there was little awareness of LGBT+ people within the newly formed 'community hubs' and a lack of active connection with themselves as providers of support to older people. This left them very much in the position of chasing and following up and asserting themselves to ensure that community members got essential support. They referred to common assumptions about how people were expected to connect and form 'bubbles' as described in the government guidelines regarding the gradual lifting of restrictions (Department of Health and Social Care, 2020). These failed to acknowledge the different relationships and friendship families of older LGBT+ people. Secondly, for those who were newly 'out', or perhaps questioning and looking for new partners and sexual contact, they were unable to make vital new connections and/or attend support groups. This was also a tension for those who may have been hiding or keeping a low profile about their personal relationships when it came to government policy on whom they were permitted to contact. Some people did not want to be in the prescribed 'social bubble' with relatives, particularly where they had not told their family a about a romantic partner. This gave rise to dilemmas about coming out or | being obliged to prioritise relationships that may have not been in the older g LGBT+ person's best interests or given them choice. Secondly, the emphasis BB on contact tracing did not take account of the issues for LGBT+ people who live fully or partly concealed lives and may not wish to reveal their contacts. Organisational structures in the LGBT+ advocacy organisations often comprised of part-time and disparate team members funded via a series of u disparate new projects or transient funding arrangements. One organisation I worked specifically with older LGBT+ people through three different projects U for: older people with disabilities, trans survivors of trauma, and dementia g services. This involved running several different groups at different times, | meaning that the informant rarely overlapped with colleagues outside of n her project teams. She then had to find some way of pulling these services g together to prioritise support more centrally. Essentially many of the orga- m nisational informants key roles focused on bringing people together, which highlighted the gaps in their resources and ways of working. The practicalities of homeworking included how people handled confidential information in the absence of formal databases, inducting and supporting new workers and ethical issues for those providing counselling services not consistent with the protocols and disciplines normally used. Another organisational informant's situation was compounded by her personal experience of bereavement. She had returned to a job that she no longer recognised because of COVID-19, and was not able to get much-needed support from her colleagues due to lockdown. On top of this, she then had to provide outreach to people when grieving, some of whom were grieving themselves. For some informants, they found the demand and way of working with vulnerable people with complex needs especially cognitive issues, exhausting. This could involve extensive regular phone contact with a large number of individuals, the work with whom would normally have been supplemented by peer support. They reported undertaking intensive work to keep in touch with people generally as being both distressing and unrewarding where many community members living alone were clearly deteriorating. I am working with one person with his partner with memory loss who is in a care home. He is deteriorating very rapidly, although staff set up a Skype meeting, it just does not work. Another does not understand and then she remembers and has a panic attack and has been calling ambulance several times a day. People cannot write things down for her. She does not understand about the food delivery, why she cannot get to the shops. Then if she has to go into a care home, what about her rights? (T01) One organisational informants commented on how many known areas of potential discrimination and gaps they plugged in the system, had become magnified. In the past, their organisation were active in supporting both care providers and service users through a series of planned awareness raising, staff training and advocacy and support. They did much of this work through building local relationships, nurturing partnerships and being present. The restrictions meant s that some staff were unable to keep a keen ear to the ground, respond proacti-!= vely to any difficulties, particularly in relation to how individuals were settling | in to care homes (T01). 5 There were several accounts of very challenging and personally diffi- | cult situations that the organisational informants were dealing with. One s involved an older man estranged from his family who was in poor physical ¡u health. His sister died and he took great personal risk to attend her funeral, an unpleasant experience involving extensive travel and personal challenges. | This had a dramatic and adverse effect on his health resulting in a stroke. ts The organisational informant highlighted how isolated some community | members had become. Another example involved situations where people | were moved into hotels during lockdown with people they did not know or is were at risk of being 'outed', resulting in violence for the LGBT+ person and in one case a suicide (T02). It was further noted that the trans community had felt more vulnerable due to the increase in trolling and blame discourses in wider society associated with the virus. Trans individuals were unable to access their normal support networks. This led to a potential increase a sense of isolation and feelings of being unsafe. There is a huge impact on access to trans-affirming services, including medical consultations and waiting lists to Gender Identity Clinics, which were already severely lacking (M02). There were some regional differences in how organisational informants were emerging from lockdown. For example, in Wales there was greater trust expressed in the devolved national government. Some of the suggestions that emerged from the organisational informants reiterated the importance of having some dedicated guidance regarding LGBT+ issues for mainstream care organisations during a crisis. Organisational informants were mostly small voluntary groups who essentially arranged under the remit of their own assessment and within their own limited resources, they emphasised the need for more formal review and learning for any future crises. The nature of their small grant funding also jeopardised their potential for flexibility for example in being able to take out new subscriptions for virtual platforms such as ZOOM, being able to provide some of their more isolated service users with essential equipment or smartphones to enable them to survive. Organisational informants said they would like to have seen a sense of strategic recognition of the challenges faced by the LGBT+ community, who had largely been rendered invisible. A key learning point was the observation that so many older LGBT+ people were living in unsuitable conditions, which became more problematic during lockdown. Where they had established strong relationships with local organisations, some organisational informants had capitalised on these and there were good examples of local organisations checking in with the organisational informants regarding the impact of lockdown for the users of their services. This was very dependent on arrangements locally as opposed to any national recognition in policies, public health measures and distribution of resources in relation to the specific challenges for the care sector. Discussion z a This qualitative study provides a snapshot of how older LGBT+ community | based organisations responded to and adapted their provision during a specific g period within the global COVID-19 pandemic. Listening to the voices of advocacy B organisations provides opportunities for critical reflection on how far UK public a services are engaging with LGBT+ ageing care and support and the implications n for driving further activism and engagement between and within communities that were touched upon across the three themes outlined here. This study also | provides some small insights into the transformative potential of the experien- I e ces of the community during the pandemic, the enablers and barriers for more U joined up responses and the potential for solidarity in the response to the UK g older population. | Understanding similarities and differences in health and wellbeing n outcomes for LGBT+ older people's health within shifting structural and g environmental contexts would help to articulate ways to promote equalities m in ageing. It is important to recognize the potential tension between heterogeneous approaches given the diverse nature of these communities and the need for system-level changes, which often assume more homogenous needs. Fredriksen-Goldsen et al. (2014) suggest that investigating sexual and gender identity-specific strengths and resources are equally important in the effort to understand LGBT+ health. These must utilise health-promoting mechanisms, which include their resilience and resistance. There were limitations and strengths in this respect according to the experiences of those LGBT+ advocacy organisations that were involved. Recognising difference in the impact on different ageing communities from COVID-19 requires understanding and appreciating the intersectionalities of lived experiences. This concerns how multiple dynamic factors inform experiences and identities and the commonalities around which complicate the practice of effective solidarity to help communities engage in more activism (see Farmer, 2020). Researching and reflecting on the experience of COVID-19 has offered a further opportunity to politicise LGBT+ ageing. We need to understand how contested, shifting sociocultural and historical discourses shape the lives of older LGBT+ people (Fredriksen-Goldsen et al., 2014). In addition, professionals, practitioners, service providers and advocacy organisations must use their practice knowledge and commitment to social justice to advocate for policy change and equitable access to services. Themes from Mundy's (2013) study referred to earlier, on how state-based LGBT+ advocacy organizations establish legitimacy and create collective understanding for movement issues and goals among diverse stakeholders, echoed some findings from this study. Mundy's focus on working together to develop a critical mass to build an organised ground-up strategy was evident in the way in which the LGBT+ organisations had been working up until the pandemic. They crafted positive, non-combative messages that communicate the importance of diversity that was issue specific, the breadth of diversity within the LGBT+ community, and how that diversity reflects society as a whole. It is important that these LGBT+ advocacy organisations are in a po- s sition to convey local, specific and authentic experiences of their community != members during a crisis. | What happened during COVID-19 emphasised how LGBT+ issues require ongoing dialogue so that experiences during a public health crisis are not put | aside but are actively recognised as being in common with the issues faced s by other ageing communities. This 'spiral of advocacy' articulated by Mundy ¡u (2013) is an important narrative which allows advocates to discuss the core issues in a controlled yet strategic way, potentially contributing to the way in | which society discusses these issues at higher, possibly national levels. Such a ts bottom-up strategy, Mundy argues, is the only plausible route to substantive | social change that can be in tension with a top down, national strategy. ro I ^ Conclusion This paper has discussed some of the strengths and limitations in LGBT+ community-based advocacy drawing on a case study of navigating LGBT+ ageing inequalities during challenging times. In the UK, the adult social care sector has faced unprecedented challenges with under-investment in preventative and community-based services, severe cuts to social care funding and a range of workforce development issues that threaten to overwhelm the sector. These have posed many challenges for social workers. The LGBT+ community sector has played a substantial role in the provision of essential services for many years and have made substantial gains to date and these have had a positive social and cultural impact on LGBT+ equalities more broadly. Whilst successful in its 'progressive localism' to provide 'more locally responsive, cooperative and mutualist visions' (Findlay-King et al., 2018, p158), this has constantly been undermined by austerity and more recently by the crisis which followed the COVID-19 pandemic. This meant the system entered the crisis already stretched to the limits. Whilst there is a role for LGBT+ organisations in opening-up spaces for more innovative support, they should not be expected to continue to replace the quality of provision and safe services that LGBT+ older people are entitled to. These areas will need to be prioritised by the government in the pursuit of LGBT+ equalities agenda if it wishes to provide high quality health and care services, improve population health and make good on its promises to 'level up' society (Cameron et al., 2021). 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