My “control freak’s guide” for my disabled daughter’s dignity and care in hospital
The thing that worries me most about my disabled daughter as she gets older is who will understand her. Who will really get to know who she is, and what …
Category: patient advocacy
The rare disease game-changers showing how SEND co-production can work
Last week I attended the European Conference on Rare Disease being held in Edinburgh*. It was three days of listening to presentations about developments in rare disease research and medicines and …
How a grandma got a clothing giant to “adapt” and help families with disabled children
As all parents and carers of children with additional needs know, it’s the little things that keep us awake at night. You know the kinds of things I mean. Those …
Patient Solidarity Day 2015
We should all have access to the healthcare we need: good quality, affordable care without fear of discrimination. This is our human right. ~ Patient Solidarity Day 2015 ~ …
Mental Capacity and young people with SEND: A quick primer
Earlier this week I attended the SEND seminar of the law firm, Boyes Turner who represent families having difficulties getting the SEN or disability support they need. The firm is …
SEN Assessments and Outcomes: What and when
I had a very busy day on Tuesday at the 25th Anniversary conference of national and international charity, Genetic Alliance UK. There is some really exciting work being done in genetic …
Parents must advocate for each other to make the new SEND system work
I was invited to speak at a conference last weekend called #RoadMapforLife at Swiss Cottage school, a special school in north London. Writing the presentation, I was reminded that even …
#RareDisease Day: Impossible situations create remarkable people
Today is Rare Disease Day and during the past week we have been featuring a number of families who have been affected by rare conditions. Even if you’re not especially …
#RareDisease Day infographic and talking parent/patient advocacy
As I’m a fun kind of gal, yesterday I watched the livestream of the #rareEU2015 meeting in Brussels held by EURORDIS, Europe’s rare diseases patient advocacy alliance. Well, listened to …
How Jonah’s parents are connecting families with his rare disease -and how you can too
As an online manager of international patient communities for many different rare diseases, I receive emails every day from parents and affected people looking for help and information about their …