Rare Disease Day: Hear our voice to help meet our needs
Monday 29th February 2016 is quite aptly named Rare Disease Day – as a leap year it’s the rarest day of the year. Around the world, people will be coming …
Monday 29th February 2016 is quite aptly named Rare Disease Day – as a leap year it’s the rarest day of the year. Around the world, people will be coming …
Tania writes: Ask anyone who’s been through England’s new special educational needs statutory assessment as part of the EHCP process, and you’re more likely than not to hear a sorry …
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 …
In an article on 3rd January, The Independent reported comments from Anna Feuchtwang, Chief Executive of The National Children’s Bureau, regarding, “…anecdotal evidence that academies are more reluctant to accept children …
Specialised help and services for children and adults with rare or undiagnosed conditions has always been hard to find – or non-existent – and often, parent carers and patients themselves …
As soon as they became our neighbours, our mother sent us round to play with the kids next door. Vivacious twin girls, of no interest to me, and the boy. …
Tania: Today we start a new series of articles from Zoe Thompson, who has been a regular contributor to our SNJ LinkedIn group Zoe is the Head of Development at …
Every child in England designated as having a special educational need (SEN) will have a primary need falling under one of four main types: Cognition and learning, Communication and Interaction, …
SNJ note: We’ve been looking at a few more books for families with SEND – or should I say our reviewer, Nicky Goode has. This time she’s looking at: Autism …
Tania’s note: Today I’d like to welcome a new columnist, Marguerite Haye. Marguerite works with local authorities as the lead for transferring Statements into EHCPs at a local authority. She …
When your child has a very rare condition it’s hard not only to find specialists and the right treatment but also to find others who understand your experience. Ceridwen Hughes’s …
You’re probably reading this because you are involved as the parent, carer, advocate or educator of a young person with SEND. It’s likely you’ve had some contact or information from …
One of the questions you are likely to be asked if your child is assessed by a speech and language therapist is, “has their hearing been tested?” The link between …
We are separated in so many ways: time and distance, age and language, how you see ‘you’ and how I see ‘me’. On Sunday I was helping at a Mass …
We’re really pleased to have another post from reflexologist, Lorraine Senior who you can find today and tomorrow at the TES SEN show in London. **** Some time ago, I …
Tania’s note: Malcolm has escaped from the usual Friday columnist slot to reflect on a wonderful awards ceremony that he and I attended last week and at which he was …
The end of the school holidays will have brought mixed feelings to many parents of children with additional needs. For some, the start of a new term will mean an …
Tania’s note: We’re delighted to introduce Genetic Alliance UK as our new columnist for rare disease, genetic and undiagnosed conditions. Genetic Alliance UK is the national charity working to improve …
In Swindon there is a traffic system known as “the Magic Roundabout.” It’s really a system of five small roundabouts surrounding a larger one. It’s a bit counter-intuitive: you go …
As a young boy, on my way to a hospital appointment at The Brompton or Great Ormond Street (I can’t remember which, I visited both quite a lot), I became …