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 [...]
Holidays 'Same S*!t Different Location'. That's the title of an episode of 'The Skies We're Under' podcast, a podcast by and for families of children with complex disabilities. It's true... as parent carers wherever we go as a family the routines of daily care don't stop because we're on holiday. Feeds need making, syringes washing, food [...]
When Government Improvement Plans or initiatives arrive in inboxes, or in the media, it can be incredibly frustrating when schools already have so many everyday demands on time and resources. We know that the additional demands you feel, unite schools with the families you engage with, who are also focussing on ‘just’ getting through the [...]
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 [...]
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? [...]
November. It’s that time of year again when Pudsey is dusting off his eye patch and schools around the country are asking children to come in wearing spots (because we all have spotty clothes in our cupboards) to raise money for Children in Need. What could possibly be wrong with [...]
I recently had a conversation with a head of SEN services in a local authority working incredibly hard to stretch scarce school placements for children with SEN. In the middle of our conversation, he explained how it simply isn’t fair for him to allocate resources based on who shouts the loudest. Rather, he has a [...]
Before having children, holidays often consisted of lazy pub lunches, afternoon naps, late nights and spontaneous decisions. After children – well, I guess we all acknowledge, it is a ‘bit different’. When you have a child with additional needs though, just going outside the front door for a couple of hours can take an operation of [...]
