The Rare Pride project

Stark Findings

We know from the stark findings of the report published in 2018, by the charity Stonewall, that people from LGBT communities face many challenges. This report was based on YouGov research* with 5000 lesbian, gay, bi and trans (LGBT) people across England, Scotland and Wales about their life in Britain today.

This report, which is part of a series based on the research, looks at mental health and well-being of LGBT people and investigates specific experiences when accessing healthcare services.

This study shows the rates of depression, anxiety and other mental health conditions among LGBT people. It also looks into the accessibility of healthcare services and discrimination LGBT people face when seeking medical support.

Some of the stark findings were:

• Half of LGBT people (52 per cent) experienced depression in the last year
• Research shows LGBT people face widespread discrimination in healthcare settings
• One in seven LGBT people (14 per cent) avoid seeking healthcare for fear of discrimination from staff

Genetic Alliance UK published the Rare Experience 2020 report* which highlights the lived experience of people affected by genetic, rare and undiagnosed conditions. Findings from this report were based on survey responses from over 1000 people and 2 online workshops.

Some of the stark findings were:

• People with rare conditions are insufficiently served by the system
• Much more work needs to be done to improve outcomes and experiences for people affected by genetic conditions
• Most people have to coordinate their own care which is often extremely complex – ‘professional care coordination is rare but necessary’
• The report does show some positive experiences, but these are rare and require resources and coordination

With this in mind, we have been working in collaboration with Rareminds, a charity who provide counselling services, wellbeing information and training for people affected by rare conditions. You can find further information about Rareminds HERE

Together, we are starting the ‘Rare Pride’ project to seek experiences from the Rare, LGBTQIA+ community so we can work towards improved healthcare and support services.

Rare Pride is aimed at people with a rare condition/s who identify as Lesbian, Gay, Bisexual, Transgender, Intersex and/or asexual or those who are questioning their sexuality or gender identity.