
Blog
Through the blog, Rachel’s Memoir The Skies I’m Under and The Skies We’re Under podcast we share the stories of fellow parents so we can all feel a little less alone and little more understood.
Click the icon to the left to access a page of useful resources that we have compiled over the years.
I’m too busy …
In promoting the 'Don't call me Mum' initiative and asking practitioners to #CallMe, I often hear the excuse that a hospital professional is simply too busy. It is easy in the bustle of the hospital ward to mistakenly regard the details as unimportant. Like the panoramic view of any hospital stay might include the admission date, the treatment and [...]
‘With’ not ‘to’ … Co-production Week 2023
Co-production Week In 2020, the world was turned upside down. Things once considered important no longer took priority. People's values were honed, the world shrank, and everyone had to get used to living in a new way. The world got a glimpse of the transformation that occurs in the life of a family who loves someone with complex disabilities [...]
Losing control
Ever feel like you are losing control? One of the first things to disappear when becoming the parent of a child with complex needs, is a sense of control. Some people live deluded that they are the masters of their own destiny, but for parents of someone with disabilities, the weeks ahead are shaped by a growing list of [...]
Dear Professionals …
I’m not sure where to start because there are so many of you who have the opportunity to deliver personalised care. Maybe you’re one of the many therapists (Occupational Therapist, Physiotherapist, Speech And Language Therapist to name but a few) who collude and agree when it’s best to meet and then ask that I adhere to 'your' agreed date [...]
“Don’t Call Me Mum” a Key Performance Indicator (KPI) for Personalised Care
Personalised care is to be business as usual from 2024 but is the centralised drive for change really capturing the cultural shift required? When there is still debate amongst practitioners about the challenges of using a parent’s name, how can the wider-reaching scope of personalised care be expected to be embedded? The hallmark of [...]
Deputyship: Another Disability Tax
As we discussed in Season 2, Episode 3 of ‘The Skies We’re Under Podcast’, I’m baffled that the chronological transition from age 17 to 18 means my son (who is entirely reliant on others for his safety, well-being, physical health and joy in his life), will no longer have the legal protection of a person who loves him advocating [...]