My dear husband is after just over a month and a quarter beginning to emerge from a bout of double pneumonia but is left with a disabling lung condition (bronchiectasis) which leaves him open to its resumption and by rarer & more resistant infective agents that affect those without that chronic condition. He will have issues with breathlessness, mobilizing and so on and I recognise then as his husband from January of the year after legalisation of gay marriage, his partner since the the 1980s, lover through all of of this – with ups and downs enough – I am now dedicating myself as his carer, as he remains my carer. We are locked in mutuality, but here that is not the point.
I find the transition strange to think about because as well as being a social worker, primary care mental health therapeutic worker and carers worker in Consett, for the then Princess Royal Trust for Carers, now submerged in Carers UK, I cannot remember that provision for queer carers was anywhere near then on the public agenda or even in our practice as workers (even for me – a queer man). Chosen families were rarely mentioned. As head of social work for a short time in Teesside University, I tried to introduce it so the curriculum on carers and was shot down by the University for offering payment for LGBTQI+ professional to talk about the issue (this in about 2010) when you ‘can get straight carers for free’. ‘The issues are all the same’, they said. Carers Workers I know now avoid training in queer issues: especially trans issues. What hope then of knowledge growing?
Yet these were the issues found in a 2023 study by Carers UK (find it at the link), from the 2024 Updated Briefing (use the link):
State of Caring 2023 findings[1]
Finances
- LGB+ carers[2] were more likely to be struggling financially. 40% of LGB+ carers said they were struggling to make ends meet, compared with 28% of heterosexual carers. 74% of LGB+ carers said they were worried about living costs and whether they can manage in the future, compared with 60% of heterosexual carers.
“I am personally very poor and dependent on the income and residence of the person I care for. We have enough because I am careful, but very little outside that. I haven’t taken a holiday in over a decade because I don’t have the money for it.” Queer carer
- LGB+ carers were more likely to be cutting back on things. 53% of LGB+ carers had cut back on seeing friends/family compared to 46% of heterosexual carers. 41% of LGB+ carers had cut back on essentials like food or heating compared with 33% of heterosexual carers.
- LGB+ carers were more likely to say the cost-of-living crisis was affecting their health. 76% of LGB+ carers said the increase in the cost-of-living was having a negative impact on their physical or mental health, compared with 63% of heterosexual carers.
“I am struggling to balance studying, working and caring but need to work to afford the cost of living.” Bisexual carer
- LGB+ carers were more likely to say they needed more financial support. 60% of LGB+ carers said they needed more financial support compared with 49% of heterosexual carers.
“I’m heavily in debt because the benefits system was not properly explained when I started my caring role.” Gay/Lesbian carer
Health
- LGB+ carers were more likely to say that caring had impacted on their mental health. 84% of LGB+ carers said they feel stressed or anxious, compared with 79% of heterosexual carers, and 56% of LGB+ carers said they feel depressed compared with 49% of heterosexual carers.
“I’ve been diagnosed as having burnout about 6 weeks ago and I’ve just been hanging in there ever since. I need to take naps most days and my CBT treatment has my Stress levels constantly at severe.” Queer carer
- LGB+ carers were more likely to feel lonely. 59% of LGB+ carers said they feel lonely compared with 50% of heterosexual carers. 43% of LGB+ carers said they needed support to prevent/reduce their loneliness/social isolation compared with 35% of heterosexual carers.
- LGB+ carers were more likely to say they needed more support with health and wellbeing. 68% of LGB+ carers said they needed more support to look after their own health and wellbeing compared with 63% of heterosexual carers.
“I think the emotional support sometimes needed by carers goes unrecognised .i.e., if you are not providing a lot of physical care you are not a real carer. Also the family dynamics change when you live with a parent and carer for them particularly if it’s in their own home and this can be very stressful.” Gay/Lesbian carer
- LGB+ carers were more likely to say they needed a break. 52% of LGB+ carers said they needed more breaks or time off from their caring role compared with 48% of heterosexual carers.
Support with caring
- LGB+ carers were more likely to have concerns around services not meeting their needs. 52% said that services not meeting their needs would be a challenge compared with 48% of heterosexual carers.
- LGB+ carers were more likely to feel unsatisfied with social care services. 34% of LGB+ carers receiving support from social care services disagreed they were satisfied with the quality of care, compared with 24% of heterosexual carers. 35% of LGB+ carers receiving support from social care services disagreed that they would be listened to if they had concerns about the quality of care, compared with 30% of heterosexual carers.
“I’ve asked for support in the past with something and was told I’d hear back and receive the support, I did not.” Pansexual carer
- LGB+ carers were more likely to say they needed more support with planning for the future. 38% of LBG+ carers said they weren’t sure how to plan for an emergency and would like more support with this, compared with 33% of heterosexual carers.
“I had not considered this as it is always me in everyone else’s plan as first contact! I don’t know where to start and will need help with this.” Gay/Lesbian carer
This is sobering reading for me now as I realise that, well into retirement. both my husband and me will almost certainly be subject to the financial issues mentioned, as the lack of recognition of specifics of the needs of the supporting the queer community that is not based on heteronormative exclusive values and sometimes homophobia. In a rural community our links to queer support is not extensive. Carer couples get isolated – queer ones more so. And the nature of ’emotional support’ often makes assumptions about the conditions under which the emotional lives of queer people have developed and their internal differences from each other. As always trans carers will inevitably be left to fend with the antagonism against them alone.
There is no doubt that Geoff and d I need to monitor all this as we struggle on. Maybe I will return to this issue.
With love and trepidation
But most of all tonight to my husband (still recovering his strength in hospital),
Steven xxxxxxxx
NOTES FROM EXTRACT ABOVE:
[1] Due to the small sample size, we are unable to report on trans carers. However our research report on trans carers considered the experiences of trans carers.
[2] LGB+ refers to carers who self-reported their sexual orientation as gay/lesbian, bisexual, or other (eg queer, asexual, pansexual).
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