Patient Advocate Power! Renata helps create first specialist nurse for Undiagnosed kids

renata-dom

Today is Undiagnosed Children’s Day and a perfect day to tell you about an achievement for our SNJ team member and JustBringTheChocolate Blogger, Renata Blower. To mark the day last year, Renata made this fantastic video with her three children, Elliot, … Keep Reading…

Our son’s undiagnosed condition brings new challenges almost every day

At the end of this week it’s Undiagnosed Children’s Day. These are conditions so ultra-rare they don’t have a name – and that brings many more challenges for families already dealing with a sick child. We have some special news … Keep Reading…

Little or no choice for young disabled people for further education

disabled students

A while ago, you may remember we featured a post from Kathryn Rudd OBE, Principal National Star College and Chair of the Association of National Specialist Colleges (Natspec) They were running a survey to determine if young people with SEND … Keep Reading…

What does Participation look like? A Circle or a Ladder?

Circle of Involvement

As I sat scrolling through Twitter a few weeks ago, I came across a conversation that set me thinking. Kath Evans (Head of Patient Experience at NHS England) was asking if people preferred an image showing “the ladder of participation” … Keep Reading…

#12MillionVotes: A Manifesto for Disabled People

12 million votes

It’s two years now since I was diagnosed with Ehlers Danlos syndrome and Postural Orthostatic Tachycardia and officially became one of the millions of people, young and old, who live with a disability. It’s given me an interesting perspective to … Keep Reading…

On conversation, sensory issues and being different: Some SNJ book reviews!

I can't wear those clothes

I am sometimes sent books for possible review but find it difficult to fit it all in. Luckily, I know some parents who are very good at reading and reviewing books, so I pass suitable ones on and they may review … Keep Reading…

The role of the SENCO: what do you need to know?

senco

The SENCO has a critical role to play in ensuring that children with special educational needs and disabilities within a school receive the support they need. Gradually over the years the status and import of the role has developed with … Keep Reading…

Special Needs parents outraged at use of Sam Cam’s bereavement as election tool

Sam Cam comments

The article on Samantha Cameron that appeared in The Daily Telegraph on Monday has caused a storm of outrage among Special Needs Jungle readers on our Facebook page. In an article entitled, “Samantha Cameron: pain of son Ivan’s death will never … Keep Reading…

SEND reforms: Why working with parents means taking a walk in our shoes.

The new SEND system places an emphasis on teachers working hand in hand with parents as part of “Team My Child”.   However, this may be easier to say than to do. After all, it cannot be easy for an overworked … Keep Reading…

The holiday farm that’s accessible for everyone whatever your disability

lad with hen

The Papworth Trust helps to support people with disabilities live their lives to the full. Today we’re helping them tell everyone that their accessible holiday farm, Kerry Farm in West Wales, which provides support and respite for people affected by … Keep Reading…