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 [...]
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 [...]
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 [...]
An upside down world In the last year, the country has been turned on its head. Things which were once important are no longer a priority. People's values have been honed, the world has shrunk, and everyone has gotten used to living in a different way. Whether it is wearing a face mask to pop [...]
It is reported in the BBC news yesterday (18th March 2021) that over the past year the CQC has identified 508 “Do not attempt resuscitation” (DNAR) orders which were inappropriately put in place without discussion with the person or family involved. There is evidence to suggest this is happening more frequently for people who have learning [...]
If you had told me six months ago that any of the support we relied was going to be taken away from us as a family (until further notice), I would have considered locking myself in my bedroom. Ask me to home school ANY of my children = tears (there is a reason I am [...]
There is more to me than you can see. I don’t show my vulnerabilities because that is not how it should be. But when I dare to look into your eyes, I know you are a lot like me. I wake in the night, worrying about what more I should do, but you only get to [...]
Being the parent to child with complex disabilities is like living on an island. The surrounding people each reside on their own islands which on the surface appear similar but feel worlds apart. To others, my island looked just like theirs, but I knew it was so very different. Although the other islands were not too [...]
An open letter. I respect you. I really do. You obviously care and have years of experience. You haven't had a personality transplant to take this job. You want to help people, to help families like mine. You are in such a difficult position. You're the face of the bureaucrats. The ones who get to say [...]
Ever feel like you are losing control? One of the first things to disappear, when I became the parent of a child with complex needs, was a sense of control. Once I foolishly thought I was the master of your own destiny. Suddenly, the weeks ahead of me were moulded and shaped by a growing [...]
