LGBTQ+ lived experience advisory board

[ArabellaScott]

A five-year research project from Edinburgh Uni 'seeking to better understand LGBTQ+ suicide and suicide prevention through the lifecourse in the UK'

'The Rain within the Rainbow project is seeking a diverse group of UK-based LGBTQ+ people with lived experience of suicidal thoughts, feelings or attempts to provide guidance, direction and critical insights through our Lived Experience Advisory Board.
The Lived Experience Advisory Board will meet between 2 and 4 times a year, with occasional emails in between (this may change slightly over time, in consultation with Board members).
We are currently recruiting for members of our new Lived Experience Advisory Board.'

It'll be interesting to see the outcomes of this project, given some of the rhetoric around suicide and suicidality.

I wonder if gender critical views would be welcomed?

blogs.ed.ac.uk/rain_within_the_rainbow/lived-experience-advisory-board/

Funded by the Wellcome Trust.

'This blog post marks the beginning of the Rain within the Rainbow project, funded by the Wellcome Trust! The project aims to improve our understandings of LGBTQ+ suicide across the lifecourse, and to develop principles for a tailored approach to LGBTQ+ suicide prevention in the UK. The project came about in response to a number of unanswered questions I had left over after working in the area of LGBTQ+ suicide and suicide prevention over the last 6 and a bit years (if you’d like to see the other work I’ve been involved in, you can take a look here: 1], 2], 3], 4]). In particular, I was interested in why, given the recognition that LGBTQ+ people have systematically higher rates of suicide 5] the majority of research in this area focussed on 18-25 year olds 6], rendering the experiences of LGBTQ+ people aged under 18 and over 25 almost invisible. I also wondered why, given the widespread recognition of this tragic health inequality (with estimations that around 5% of all people who die by suicide in the UK are LGB whilst a further 1% are trans 7]) , it appeared that far less was known about why this inequality exists in the first place or what we could do to reduce these deaths. These questions sit at the centre of the Rain within the Rainbow project.'

It depends.

I've just been in a meeting where the way Lived Experience representatives presented matters with the clear expectation was that they would be a unified Borg (similar to MN's becardiganed monolith) in some areas.

I'd like to think an advisory board (and surely they mean advisory group | panel or such to avoid the implicit governance responsibilities) would need a range of perspectives.

I'm not seeing any kind of ethics statement. I'd have thought for a subject this potentially sensitive this would require very vigorous safeguarding?

Hm. I'm curious about that distinction between 'board' and 'panel', too.

Looks like a hastily slapped together and poorly thought through project to me, but who am I to judge?

Yes, I'd expect an ethics statement and a description of the support available.

I'd like to see some awareness of the comparative cohort. I'd argue that the comparisons of suicidality rates etc. should be with the general population that displays some MH difficulties. I'd hoped over time that LGBTQ+ people in the UK would be less vulnerable to coercion and blackmail as a MH driver but it's difficult for me to scope that as it's an issue that I still hear about from a variety of relevant populations. I wouldn't know how researchers would conduct comparative studies for those vulnerabilities.

Surely the statistics they quote mean that T people are mercifully under-represented in the suicide statistics? If you’d expect numbers to reflect the population, [at least] 2% of suicides should be T?

However, I think only 3.3% of the UK population identify as LGB, so their representing 5% of the suicides is indeed alarming.

Clearly it’s not as simple as someone’s sexual orientation, but any group being over-represented in the stats merits exploration.

Throwing together this project really doesn’t seem the best way to do it, though.

The person running the project appears to be advising Scotgov.

https://blogs.ed.ac.uk/rain_within_the_rainbow/2024/05/08/an-adventure-to-parliament/

I don't know if this is intended as a scientifically representative survey or fact finding mission, but in seeking to recruit "a diverse group of UK-based LGBTQ+ people with lived experience of suicidal thoughts, feelings or attempts" they are recruiting a biased sample of the LGBTQ+ population.

However, I think only 3.3% of the UK population identify as LGB, so their representing 5% of the suicides is indeed alarming.

There are a lot of unhelpful and under-specified numbers in this arena. Men are over-represented (let's set aside the thorny topic of sex disaggregated data). Some male age demographics are as well. It's very difficult to obtain high quality data but I've seen reports that there is a substantial demographic uptick for those who are living with

• cancer with a known poor prognosis (e.g., pancreatic, stage IV lung)
• long-term conditions such as chronic ischemic heart conditions or COPD.

https://www.gov.uk/government/news/cancer-patients-at-increased-risk-of-suicide

https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/suicidesamongpeoplediagnosedwithseverehealthconditionsengland/2017to2020

As ever, I'm sure this is multi-factorial.

There are indicators that men are disproportionately over-represented.

A total of 4 722 099 individuals (50.3% men and 49.7% women) aged 18 to 99 years received a diagnosis of cancer during the study period. A total of 3 509 392 patients in the cohort (74.3%) were aged 60 years or older at the time of diagnosis. A total of 2491 patients (1719 men and 772 women) with cancer were recorded to have died by suicide over a follow-up period up to 22 years. This number represented 0.08% of all deaths.

Henson KE, Brock R, Charnock J, Wickramasinghe B, Will O, Pitman A. Risk of Suicide After Cancer Diagnosis in England. JAMA Psychiatry. 2019 Jan 1;76(1):51-60. doi: 10.1001/jamapsychiatry.2018.3181. PMID: 30476945; PMCID: PMC6583458.
www.ncbi.nlm.nih.gov/pmc/articles/PMC6583458/

Informally, reports from relevant patient organisations and networks indicates that some of the drivers for men include a lack of adequate MH support for people with cancer, particularly those who

• have experienced a substantial shift in their status and role within a family structure (e.g., no longer the pater familias or the breadwinner)
• do not have a support network such as friends and family.

Overall, I'd like to think that there have been substantial and profound changes to outcomes in some cancers and the ones with a dismal prognosis will reduce over time.

I've introduced this digression as a way to explore the importance of risk stratification by age, sex, indices of multiple deprivation, and factors associated with a helpful support network when making comparisons.

This seems to conflate a panel and an advisory board where members will both advise on and participate in the research.

I agree, there should be ethical approval and external support and counselling (at a minimum) given the sensitivity of the topic, and I would have expected these to have been covered in detail in the application to the Wellcome Trust.

Hopefully these have been missed off this document but are there in the project. If not heads should be rolling in both Edinburgh and the Wellcome Trust.

There is a 'reflective questions' document that asks potential candidates to think about their personal triggers and how they might cope.

It seems ... light.

Edinburgh university known for its total impartiality and objectivity in this area

I would like to think that this would at last produce some robust evidence and data so ppl won’t keep using the completely flawed “data” from the Trevor project

i have my doubts it will