Not a Different Destination, but a Different World: Reframing Parent Carer Support

By |2025-09-30T12:00:11+01:00September 30th, 2025|Categories: Uncategorized|

Today I was at the Labour Party Conference with the incredible Hayley Charlesworth of Harry’s Pals, speaking about Every Parent’s Worst Nightmare. This isn’t about disability.It’s about the mental health of parents and carers who are told their child has a life-limiting condition. No parent ever holds their newborn and imagines being told their child may [...]

Disability isn’t a Four Letter Word (2025)

By |2025-06-17T08:26:24+01:00June 16th, 2025|Categories: Uncategorized|

CONTENT WARNING: This blog contains ableist slurs with the purpose of understanding and challenging how our ableist attitudes shape and form our language. For ableist slurs not to evolve attitudes need to change. We give words their power. The negativity of our words depends on our attitudes not the letters it contains. Words surrounding disability [...]

Hmm…this feels unusual

By |2025-02-27T14:07:05+00:00February 27th, 2025|Categories: Uncategorized|

Hmm, this feels a bit unusual: Advice for Healthcare Professionals When Dealing With Something Rare By Jo Holmes Once again it’s ‘Rare Disease Day’. While I don't love identifying Lucy’s genetic diagnosis as a disease,  I do find belonging in the rare community that builds up around the 28th February each year. You may gather from [...]

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