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 [...]

‘Same S*!t Different Location’?

By |2024-11-21T10:22:35+00:00November 21st, 2024|Categories: Uncategorized|

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 [...]

Engage better with parent carers using these “Top Tips” for busy schools

By |2023-12-06T10:41:36+00:00December 6th, 2023|Categories: #bridgingthegap, co-production, communication, education, effective communication, parenting a child with disabilties, Parents as partners, special needs, Uncategorized|Tags: , , , |

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 [...]

‘With’ not ‘to’ … Co-production Week 2023

By |2023-07-05T14:36:30+01:00June 22nd, 2023|Categories: #bridgingthegap, Born at the Right Time Training, co-production, communication, Uncategorized|

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 [...]

Losing control

By |2023-06-20T11:19:25+01:00June 20th, 2023|Categories: communication, education, mind the gap, mum of child with disability, Parents as partners, Simple Stuff Works, Uncategorized|

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 [...]

Dear Professionals …

By |2023-06-06T09:22:41+01:00June 6th, 2023|Categories: #bridgingthegap, Born at the Right Time Training, co-production, communication, Don't call me Mum, effective communication, Inspiring, mum of child with disability, parenting, parenting a child with disabilties, special needs, Thank you, Uncategorized|Tags: , , , , , , , , , |

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 [...]

“Don’t Call Me Mum” a Key Performance Indicator (KPI) for Personalised Care

By |2023-05-22T14:07:33+01:00April 13th, 2023|Categories: Uncategorized|

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? [...]

Children in Need … or Children we’re Failing?

By |2023-03-08T10:57:42+00:00November 8th, 2022|Categories: #bridgingthegap, Charity, community, family, mum of child with disability, parenting a child with disabilties, Uncategorized|Tags: |

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 [...]

It’s not fair …

By |2024-07-16T14:29:01+01:00November 1st, 2022|Categories: Uncategorized|

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 [...]

Camping with a disabled child

By |2022-08-11T08:07:50+01:00August 11th, 2022|Categories: Uncategorized|

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 [...]

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